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The Oncology/Haematology Triage Tool Kit for Children and Young People. Pilot Evaluation. 13th March 2016/P.J.Jones. 1

Oncology/Haematology Telephone Triage Tool Kit for Children and Young People -‐ Evaluation Report

(Revised -‐ 13th March 2016)

Author:

Philippa.J. Jones

Macmillan Associate Acute Oncology Nurse Advisor

UKONS, Acute Oncology Forum Lead

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Table of contents 1.0 Introduction and background p.4 1.1 Quality of assessment and advice p.4 1.2 Right place right time p.5 1.3 Guidelines and recommendations p.5 1.4 Conclusion p.6 2.0 Aims and objectives p.7 3.0 Development process p.8 3.1 Development group p.8 3.2 Amendments p.9 4.0 Quality and safety p.9 5.0 The Tool Kit – content, application and implementation p.10 5.1 The Tool Kit Manual p.10 5.2 The Alert Card p.11 5.3 The Triage Pathway Algorithm and Clinical Governance p.11 5.4 The Triage Log Sheet p.11 5.5 The Triage Assessment Process and Tool p.12 5.6 Training and competency p.13 5.7 Target users and competency p.14 6.0 The pilot p.14 6.1 Training p.15 6.2 Evaluation process p.15 6.3 Pilot period p.15 7.0 Evaluation p.15 7.1 Data collection p.16 7.2 Log sheet evaluation p.16 7.2.1 Patient details p.16 7.2.2 Patient history p.16 7.2.3 Enquiry details p.17 7.3 Assessment evaluation p.21 7.3.1 Red, amber and green triggers per problem p.22 7.3.2 Risk assessment results p.22 7.3.3 Red triggers p.23

7.3.4 Two or more amber triggers p.24 7.3.5 One amber trigger p.26 7.3.6 Green triggers p.27 7.3.7 Reviews of all recorded follow up p.29 7.3.8 Assessment and admissions p.30 7.3.9 Who completed the log sheet and assessment? p.31 7.3.10 What grades of staff took the triage calls? p.32 7.3.11 Grade of staff completing the follow-‐up process p.32 8.0 Questionnaire evaluation p.32 8.1 Grade/discipline of staff completing the questionnaire p.36 8.2 Questionnaire conclusion p.36


9.0 Evaluation summary and conclusion p.37 9.1 Log sheet data collection and record keeping p.37 9.1.1 Modification/amendments to the log sheet p.39 9.2 Quality and safety of patient assessment p.39 9.3 Who manages the advice line and follow-‐up telephone calls? p.41 9.4 Incomplete records p.41 10.0 Recommendations p.41 11.0 References p.43 Appendix 1 Pilot Tool Kit Manual p.45 Appendix 2: Pilot Site Agreement p.74 Appendix 3: Diagnosis p.76 Appendix 4: Reasons for calling p.77 Appendix 5: Record of treatment regimen p.92

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Members of the Children’s and Young People Cancer Nurses Group of the Royal College of Nursing (RCN) and the United Kingdom Oncology Nursing Society(UKONS) have collaborated to produce the Oncology/Haematology Telephone Triage Tool Kit for Children and Young People (CYP).

1.0 Introduction and background The Oncology/Haematology Telephone Triage Tool Kit for Children and Young People has been developed as a guideline for the provision of triage assessment and advice for staff answering telephone advice line calls. It has been developed in response to a request from the Royal College of Nursing CYP Cancer Nurses Group. In 2010 the UKONS successfully launched the original version of the tool for the triage of adults; this is now used widely in the United Kingdom and internationally for the telephone assessment and triage of patients who may be suffering from problems associated with systemic anti-‐cancer therapy, radiotherapy or immunosuppression (UKONS 2010).

The CYP Cancer Nurses Group members reviewed this tool and thought that the process and template would be a useful addition to CYP telephone advice line services. There is little published evidence regarding CYP oncology/haematology triage, though there is anecdotal evidence regarding the provision of 24-‐hour telephone advice line support for patients and carers in CYP Principal Treatment Centres (PTC) and CYP Paediatric Oncology Shared Care Units (POSCU).

At present there are no consistent national guidelines in place to support, train or assess the competency of practitioners in CYP oncology advice line patient management.

The group found that the advice and support provided at present was reliant on the experience and knowledge of the nurse or doctor answering the call and that although there were local models of good practice they had not generally been validated. There were no tested assessment or decision-‐making tools in use at present. Furthermore documentation and record keeping differs from trust to trust.

The group supported by the RCN and UKONS decided to adapt the adult triage tool for use in CYP services. As previously stated there is little published specific evidence to support the development of CYP oncology/haematology triage services, there is however, literature regarding research and experience of the development of telephone triage, assessment and emergency triage generally. Indications are that there is a specific need for those receiving treatment to have access to a telephone enquiry service manned by trained staff (Anastasia 2002). Such a service allows for the early recognition of potential emergencies and side effects of treatment and ensures that appropriate/consistent advice is offered.

1.1 Quality of assessment and advice The assessment and advice given regarding a potentially ill patient is crucial in ensuring the best possible outcome. Patient safety is an essential part of quality care; each and every situation should be managed appropriately.

The function of telephone triage is to determine the severity of the callers’ symptoms or problem and direct the caller to the appropriate emergency assessment area if required or initiate


appropriate medical follow up (Courson, 2005).

Telephone triage is an important and growing component of current oncology practice; we must ensure that patients receive timely and appropriate responses to their calls (Towle, 2009). Harding et al (2011) concluded that triage systems could improve patient flow across diverse healthcare settings. Robust telephone triage advice lines and close collaboration with community services using developed protocols, guidelines and policies should ensure consistent advice is given and the number of patients requiring emergency admission may be reduced.

Telephone triage enables the call handler to have a positive impact on the standards of care. Successful triage will consistently recognise emergencies and potential emergencies, ensuring that immediate assessment and required interventions are arranged. Triage will also provide ongoing emotional support and care advice (Johnson and Yarbo 2000).

1.2 Right place right time

Importantly along with ensuring that urgent care is expedited and patients are directed to the appropriate assessment and treatment area, the service can reduce the number of unnecessary hospital attendances, avoiding costly visits to hospital for patients and carers. Stacey et al (2003) found that around 50% of triage calls could be managed without having to refer the caller to other services and that the number of immediate visits for medical review was reduced without causing adverse outcomes such as subsequent hospitalizations, visits to the emergency departments or deaths. These findings are supported in the evaluation of the UKONS Adult Triage Tool (2010). Evaluation of this tool found that 50% of triage calls required rapid specialist assessment, 30% of calls could be managed remotely with either telephone monitoring or arranged clinical review and 20% required only advice and reassurance.

Purc-‐Stephenson and Thrasher (2013) report that they found a high rate of patient compliance with self-‐care recommendations and suggested that telephone triage nurses were successful in diverting patients with less acute symptoms from using emergency services or visiting a general practitioner. 1.3 Guidelines and recommendations

At the outset of this project there were no national guidelines in place to support training and standardisation of CYP oncology/haematology triage. There are however, national recommendations regarding the provision of a telephone triage service:

• The Manual for Cancer Services, Children's Cancer Measures (2014) states that a 24-‐hour telephone advice service should be provided for children and young adults with malignancy and their carers. The measures also recommend that there should be agreed levels of training and qualification for those staff expected to manage advice line calls (NHS England 2013/14).

• NHS Standard Service Specification Template for Cancer: Chemotherapy (Children, Teenagers and Young Adults) states that patients during chemotherapy must be given access to a 24-‐hour helpline (24 hours a day, 7 days a week) for urgent advice about side effects or symptoms of infection from chemotherapy (NHS England 2013/14)

• Recommendations for telephone triage services contained in the Department for Health (DH) report The Acutely or Critically Sick or Injured Child in the District General Hospital: A

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Team Response (DH 2006) include: Development and implementation of algorithms such as those used by NHS Direct or ambulance services, specific training in the use of these tools and regular audits for compliance The same report also states that it is essential that there are clear lines of communication to access appropriate emergency care teams, clinicians and advice, both within an individual hospital and the network

• Sujan (2014) found that the most frequent recommendation for improving communication was standardisation through procedures checklists or mnemonics, and appropriate training in their use; all of the above elements are used within the Tool Kit

• The World Health Organisation (WHO) Collaborating Centre for Patient Safety Solutions (WHO 2007) recommends that organisations use a standardised approach to handover and implement the use of the Situation, Background, Assessment And Recommendation protocol (SBAR). The Tool Kit that has been developed adopts this approach and guides the user through the process. This recommendation stresses in particular consideration of the out-‐of-‐hours handover process, and emphasises the need for monitoring of compliance. Standardisation may simplify and structure the communication, and create shared expectations about the content of communication between information provider and receiver (Sujan 2013)

• The NHS Litigation Authority Risk Management Standards 2013–14 require an approved documented process for handing over patients. This requirement stresses in particular consideration of the out-‐of-‐hours handover process, and emphasises the need for monitoring of compliance (NHS England)

• Cancer Reform Strategy, Achieving local implementation – second annual report (DH, 2009) identified the following winning principles that should be applied in the care of cancer patients:

o Winning Principle 1 – Unscheduled (emergency) patients should be assessed prior to the decision to admit. Emergency admission should be the exception, not the norm

o Winning Principle 4 – Patients and carers need to know about their condition and symptoms to encourage self-‐management and to know who to contact when needed

• Patients have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality (The NHS Constitution for England, 2014)

The tool kit meets good communication recommendations, ensuring that contact assessment and action taken is recorded in a standard format, using an agreed process with a common language. The developed pathway ensures that the treating team is made aware of the parent/carer contact and can see clearly what occurred, thereby meeting all elements of the SBAR protocol.

1.4 Conclusion

It is clear from the literature reviewed and from discussion with experts that patients and carers value the services provided by telephone advice lines and that a service is being provided currently. However, there is little evidence/data available to evaluate current provision in terms of safety, quality or satisfaction, and no clear guidance regarding expected outcomes, competency or clinical governance. These findings support the proposed development of an approved and


recognized tool that will facilitate safe high-‐quality patient triage assessment.

2.0 Aims and objectives

The group’s aim was to develop triage guidelines that could be adopted as a national standard and would:

a. Improve patient safety and care by ensuring that they receive a robust, reliable assessment every time they or their carers contact a helpline for advice

b. Ensure assessments are of a consistent quality and that advice is determined based on the use of an evidence based assessment tool

c. Provide management and advice appropriate to the patient’s level of risk. To ensure that those patients who require urgent assessment in an acute area are identified and that appropriate action is taken, but also to identify and reassure those patients who are at lower risk and may be safely managed by the primary care team or a planned clinical review and avoid unnecessary attendance

d. Form the basis of triage training and competency assessment for practitioners

e. Help to maintain accurate records of the assessment and decision-‐making process in order to monitor quality, safety and activity

The Tool Kit has been developed for use by all members of staff who may be required to man 24-‐hour advice lines for CYP patients who:

• Have received chemotherapy/systemic anticancer therapy

• Have received any other type of anticancer treatment, including radiotherapy and bone marrow graft

• May be suffering from disease/treatment related immunosuppression (i.e. acute leukaemia, corticosteroids)

Teenagers and Young Adults (TYA) with cancer should be cared for in a dedicated TYA unit, which may be part of a service for children, or for adults.

Where they are treated in a children’s service, this triage tool kit should be used. Where they are managed within an adult service, the corresponding adult tool kit should be used. For the purpose of the Tool Kit, both oncology and haemato-‐oncology services are considered as one service and referred to as oncology. This Tool Kit aims to provide:

• Guidance and support to the practitioner at all stages of the triage and assessment process

• A simple but reliable assessment process

• Safe and understandable advice for the practitioner and the caller

• High quality communication and record keeping

• Competency-‐based training

• An audit tool This tool kit does not address patient management post admission, nor does it contain admission pathways. It does, however, give the right of admission for assessment to the practitioner manning

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the helpline.

The level of oncology/chemotherapy knowledge and training required to manage a 24-‐hour advice line is variable nationally, and many practitioners feel unsure and ill equipped to make advanced care decisions. This Tool Kit is also an educational tool and includes a competency assessment framework that all disciplines of staff would need to complete prior to undertaking advice line triage.

3.0 Development process

An initial meeting with key stakeholders from the RCN Cancer & Breast Care forum, CYP cancer nurses group and UKONS was held to discuss the possibility of collaborative working to develop and pilot an adapted version of the adult tool kit for use in a CYP setting. A bid for project funding and a project implementation document was developed and submitted to the RCN for approval. The RCN provided funding and advice to support the design, printing and pilot of the Tool Kit. Key stakeholders:

• RCN CYP Nurses Group

• RCN Cancer & Breast Care forum

• RCN Professional Lead for Infection Prevention and Control

• UKONS Acute Oncology Lead 3.1 Development group

The primary aim of the group during the development process was to gather expertise and evidence to aid with the adaptation of the adult format for use in the CYP setting. The development group consisted of:

• Senior Paediatric Oncology Nurses drawn from the Children’s and Young People Cancer Nurses Group

• The UKONS Acute Oncology Lead

• The RCN Professional Lead for Infection Prevention and Control

Members: Philippa Jones Acute Oncology Forum Lead/Macmillan

Associate Acute Oncology Nurse Advisor. UKONS/Macmillan

Rose Gallagher The RCN Professional Lead for Infection Prevention and Control.

RCN

Lorraine Turner Nurse Consultant RCN/The Christie Hospital

Helen Morris Matron-‐Paediatric Haematology/Oncology/Bone Marrow transplant

University Hospitals Bristol NHS Foundation Trust

Ruth Whitlock Paediatric Haematology/Oncology Educational Lead

Cambridge University Hospitals NHS Foundation Trust


Carol Chennery Inpatient Senior Sister Cambridge University Hospitals NHS Foundation Trust

Wendy King Macmillan Paediatric Oncology Consultant Nurse

Whittington Health

Barbara Doyle Lead Cancer Nurse Sheffield Children’s NHS Foundation Trust

Jenny Palmer Lead Nurse, Children’s Cancer Services The Newcastle Upon Tyne Hospitals NHS Foundation Trust

3.2 Amendments

The development group met to discuss:

• Current practice

• Determine the project aims and objectives

• Refine the project implementation document The meeting was well supported. It was clear that the group were enthusiastic and keen to work together.

The triage process was discussed coupled with a comprehensive in depth review of current pathways and guidelines. The adult assessment tool and log sheet were reviewed and amendments made to meet the requirements for CYP assessment (appendix 1).

The pilot followed once the content had been approved and the format of the Tool Kit agreed. 4.0 Quality and safety

Males (2007) produced guidelines for the provision of telephone advice in primary care and stressed the importance of risk management/mitigation and clinical governance in the provision of safe and high quality telephone care.

Males identified key factors to consider when developing such a service:

• Training

• Triage

• Documentation

• Appropriateness and safety

• Confidentiality

• Communication

On review, the Tool Kit was found to address all of the key issues above. If correctly used, the tool will contribute to the governance process, providing an accurate record of triage and assessment.

Regular review of triage records is recommended for quality assessment and assessment of practice.

Along with quality and safety data, regular audit of the tool provides data regarding:

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• Capacity and demand

• Common concerns and problems that CYP present with

5.0 The Tool Kit – content, application and implementation The triage process can be broken down into three steps:

• Contact and data collection

• Assessment/definition of problem

• Appropriate intervention/action The Tool Kit supports and guides the practitioner through each of the three steps leading to the early recognition of potential emergencies and side effects of treatment, and provision of appropriate and consistent advice.

The Tool Kit consists of:

§ The Assessment Tool based on the WHO/NCRI-‐CTCAE common toxicity criteria with individual guidelines

§ The Triage Log Sheet § The Tool Kit Manual containing: -‐

• Brief background and development history • Instructions for use • Training and competency requirements and assessment proforma • The Triage Pathway Algorithm and clinical governance recommendations • Examples of all component parts of the Tool Kit.

5.1 The Tool Kit Manual (appendix 1,p 45) ‘The Tool Kit Manual’, sets out the way in which the triage tool itself should be used; who it should be used by; what training they require, and the competency assessment framework that should be used. It also contains the Triage Tool and the Log Sheet, which should be used to carry out the assessment, and to document the outcome of that assessment.

It is clinically focused and covers the triage and assessment process in detail and the clinical governance pathway:

1. Initial contact and data collection 2. Triage assessment and decision making

3. Giving interim clinical advice and information to parents or carers regarding further action, treatment and care

4. Referring a patient for further assessment

It is applicable to communication via the telephone with an individual in a variety of locations or talking face to face in a healthcare environment.


5.2 The Alert Card

The group supports the recommendations of National Chemotherapy Advisory Group (2008) and the Children’s Chemotherapy Peer Review Measures (2014) that each CYP and/or carer must be provided with information about when they may need to contact the advice line for help and clear contact details. The group suggests that a card containing key information about the treatment they are receiving and the advice line contact details should be provided for each CYP/carer. These cards act as an aide memoir for the CYP and carer and as an alert for other healthcare teams that may be involved in the patient’s care. Such cards are now widely used in the adult setting in the UK.

The card contains:

• Patient identification details

• Regimen details

• Information about symptom recognition/warning signs

• Emergency contact numbers

• Information about treatment delivery area CYP services may consider collaborating to produce a standard Alert Card and provide national education regarding its significance (appendix 1).

5.3 The Triage Pathway Algorithm and Clinical Governance

Written protocols and agreed standards can be useful to describe and standardise the process of data collection, planning, intervention and evaluation. They can also help reduce risk of liability (Males 2007).

The group has developed a process map that details each step of the pathway and describes the role and responsibilities of the advice line practitioner, which should be agreed and approved locally. Advice line providers should have agreed assessment, communication and admission pathways. Assessment areas and routes of entry should be clearly defined. There should be a clearly identified advice line practitioner for each span of duty. The process should allow for allocation of responsibility to a nominated triage nurse/doctor for a period of duty. On completion of this period the responsibility for advice line/triage management and follow up of patients is clearly passed to the next member of suitably qualified staff. This should provide a consistent, high quality service. It is recommended that approval of the appropriate governance group in each service provider, for the use of the triage tool kit and implementation of the triage algorithm is confirmed prior to implementation.

The governance responsibility for the provision of the advice line service and the use of the triage guidelines/tool kit to support the service rests wholly with the service provider.

5.4 The Triage Log Sheet

It is vitally important that the data collection process is methodical and thorough in order for it to be useful and provide an accurate record of the triage assessment. A standardised format for

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recording telephone consultations will support the triage process in the following ways: -‐

• A guide and check list for the practitioner, to remind them about the important information they should collect and reassure them that they have completed the process

• A communication tool that will relay an accurate picture of the problem, and action taken at the time of assessment, to the other members of the healthcare team

• A record of the process for quality, safety and governance purposes We recommend that all advice line practitioners record verbatim what the parent/ carer calls for (Males 2007). This information may be important if the call should require review at any time. Assessment and advice can only be based on the information provided at the time of interview and an accurate record of what the practitioner was told and what they asked is vital.

A log sheet should be completed for all calls and unscheduled patient visits. This provides an accurate record of triage and decision-‐making and will support audit of the helpline service.

The data collected should be:

• Complete

• Accurate

• Legible

• Concise

• Useful

• Traceable

• Auditable 5.5 The Triage Assessment Process and Tool The triage practitioner’s assessment of the presenting symptoms is key to the process.

Dedicated time in a suitable area for the consultation will enable the clinician to pay appropriate attention to the caller, without being interrupted. The practitioner needs to be aware of the caller’s ability to communicate the current situation accurately, and should use appropriate questioning and prompts until all necessary information has been gathered. They should ensure that the caller understands the questions asked and instructions provided, and that they should feel free to ask questions, clarifying information as required. The triage practitioner should assess if telephone management is appropriate in the present situation. If the presenting problem is an acute emergency, such as collapse, airway compromise, haemorrhage or severe chest pain, then the following action should be taken:

• The assessment process should be shortened, contact details and essential information collected

• Emergency services should be contacted and immediate care facilitated

If there is any doubt about the parent/carer ability to provide information accurately or understand questions or instructions provided then a face-‐to-‐face consultation should be


arranged.

The triage practitioner should consider the data collected along with the parent/carers level of concern in order to perform a clinical assessment and decide on the appropriate action to initiate. The toxicity assessment triage tool is used as a guideline, highlighting the questions to ask and leading the practitioner through the decision-‐making process. This leads to appropriate action by giving structure, consistency and reassurance to the practitioner.

If, in the triage practitioner’s clinical judgment the guideline is not appropriate to that individual situation, for example previous knowledge about the CYPs personal circumstances or disease that would either encourage the call manager to expedite face-‐to-‐face assessment, or conversely leave the child at home despite the recommendation in the Tool Kit, then the rationale for that decision should be clearly documented. There are advice line calls/queries that will not be addressed by the assessment tool for example: a medication query or nasogastric tube misplaced. Advice in these circumstances should be given according to local policy.

A log sheet should be completed in these circumstances so that there is a record of the call and of the advice given. The triage tool is based on the WHO/NCRI-‐CTCAE common toxicity criteria.

The CYP group added detail around performance status/activity levels that was more relevant in the assessment of a sick child, and a question relating to contact with infectious disease.

It is a risk assessment tool used to grade the patient’s symptoms and establish the level of risk the patient is currently under, and will enable practitioners to provide a consistent standard of advice. Action selection is based upon the triage practitioner’s grading of the presenting symptoms/toxicity following interview, data collection and triage:

• Red – any toxicity graded here takes priority and action should follow immediately. Patient should be advised to attend for urgent assessment as soon as possible

• Amber – if a patient has two or more toxicities graded amber they should be escalated to red action and advised to attend for urgent assessment

• Amber – one toxicity in the amber area should be followed up within 24 hours and the caller should be instructed to call back if they continue to have concerns or their condition deteriorates

• Green – callers should be instructed to call back if they continue to have concerns or their condition deteriorates

If a CYP is required to attend for assessment then transport should be arranged for them if indicated either due to a deteriorating or potentially dangerous condition or lack of personal transport.

If the CYP is deemed safe to remain at home then the CYP/carer should receive sufficient information to allow them to manage the situation and understand when further advice needs to be sought (Males 2007).

5.6 Training and competency It is vital when introducing any defined process such as this that the team involved receives training and support and is assessed as proficient prior to participating (Males 2007). There is

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guidance within the Tool Kit Manual regarding training and competency assessment requirements.

The Tool Kit Manual should be read in detail at the start of training, followed by a process of formal classroom based training with scenario practice, and then observed clinical practice and competency assessment. This approach was used in the pilot process. The manual contains a competency assessment document linked to the national key skills framework that should be completed for all those who man the advice line and undertake triage and assessment. It is recommended that this assessment of competency be repeated regularly to ensure that competence is maintained; assessment could be linked to the chemotherapy annual competency assessment. The set of training slides used during the pilot are available, and can be adapted to include local detail, such as advice line numbers and service leads. They can be found on the Children’s Cancer and Leukaemia Group website -‐ http://www.cclg.org.uk The training slides cover the following key points of the process:

• Development of the tool and rationale for use

• The triage process, pathway and decision making

• Clinical governance and professional responsibility

• The importance of accurate documentation, data recording and audit

• Telephone consultation skills, including active listening and detailed history taking

It is important that the wider healthcare team is made fully aware of the plan and implementation of the triage process and the strict requirements for specific training and competency assessment before providing this service. It should be made clear that if they have not received training and competency assessment they should NOT be providing telephone healthcare advice and should refer these calls to an appropriately trained member of staff.

5.7 Target users and competency

All staff working within CYP oncology services and who are expected to manage advice lines should be appropriately trained as follows:

• Successfully complete the 24-‐hour triage tool kit training and competency assessment

• Nurses should have achieved a minimum of foundation competencies as recommended within the CYP Improving Outcomes Guidance (IOG)

CYP medical staff should be made aware of the triage tool and, if expected to provide advice by telephone, should achieve triage competencies. 6.0 The pilot The development group agreed to replicate the pilot and evaluation process used in the development of the adult version of the Tool Kit. A pilot agreement document was prepared (appendix 2.P75). Each participating site had to gain approval at trust level and return a signed copy of the pilot agreement prior to participating in the pilot.

The following trusts took part in the pilot:

• Sheffield Children’s NHS Foundation Trust


• The Newcastle Upon Tyne Hospitals NHS Foundation Trust

• Cambridge University Hospitals NHS Foundation Trust

• University Hospitals Bristol NHS Foundation Trust

• King’s College Hospital NHS Foundation Trust

• Whittington Health

• The Ipswich Hospital NHS Trust

6.1 Training All staff using the Tool Kit had to receive training and assessment of competency; a framework was supplied for completion prior to using the Tool Kit. The project lead visited each of the pilot sites to train on the assessment process prior to commencing the pilot. The pilot leads were assessed at the training day and acted as mentors and assessors to their trust teams. A slide set and scenario sheet were provided to assist with training.

6.2 Evaluation process There was a two-‐step evaluation process:

1. Log sheets A review of completed log sheets; this gathered data on reasons for calls, actions taken and quality of assessments.

All patient and trust identifiers were removed from the log sheets prior to photocopying and posting to the pilot offices. Each pilot site was given a pilot number.

2. Questionnaires Helpline practitioners and pilot leads completed a questionnaire anonymously; this gathered information regarding the design, ease of use and reliability of the tool.

6.3 Pilot period The pilot ran for a 2-‐month period or completion of 100 log sheets. Sites were asked to inform the project lead when they had commenced the pilot.

There was not a fixed timeframe for the pilot as sites had to manage local commitments in order to take part: all sites completed their log sheets during 2013.

Sites were informed that they were welcome to continue using the Tool Kit after completion of the pilot if they wished to do so.

If for any reason they were not able to complete the pilot and had to be withdrawn, they were asked to inform the project lead as soon as possible and provide a reason. None of the sites withdrew from the pilot. Sites were asked not to photocopy or share the pilot Tool Kit with any other chemotherapy units during the pilot period. 7.0 Evaluation

The aim of the evaluation was to consider and report on the data collected to assess whether or

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not the Tool Kit achieved its primary aims and objectives.

The Tool Kit aims to provide:

1. Guidance and support to the practitioner at all three stages;



• Appropriate intervention/action 2. A simple, reliable assessment process 3. Safe, understandable advice 4. Communication and record keeping 5. Competency based training 6. An audit tool

7.1 Data collection

1. Log sheets The seven pilot sites returned 274 forms in time for evaluation:

• 74% (n=202) had a correctly completed toxicity/risk assessment record

• 26% (n=72) were illegible or had an incomplete toxicity/risk assessment record Log sheets were considered to be correctly completed if they had followed the toxicity/risk assessment process and marked the log sheet as such. Forms that were illegible were either badly photocopied or completed with poor handwriting. The information received on the completed forms was entered into a database for evaluation.

2. Questionnaires Pilot site leads distributed questionnaires to staff that used the Tool Kit during the pilot. They were invited to either complete the questionnaire as a team or as individuals. We did not collect data relating to the number of questionnaires distributed. The respondents returned 24 completed questionnaires. All responses plus comments were entered on to a database for evaluation.

7.2 Log sheet evaluation

The returned log sheets were reviewed; the results are outlined below.

7.2.1 Patient details Pilot sites were asked to anonymise the log sheets prior to submission.

Age: it was not possible to accurately assess the age range of the patients as the patient details were obscured in order to maintain anonymity; however, it was clear that the data had been collected in most cases.


7.2.2 Patient history

1. Record of consultant managing care

On 75% of the log sheets, the consultant managing the patient’s care was recorded

2. Record of gender Figure 1: Gender of patient

3. Record of diagnosis On 97% (n=263) of the log sheets, the diagnosis was recorded

Diagnostic data revealed that Acute Lymphoblastic Leukaemia is the most common disease group seen, accounting for 38% (n=104) of calls (a full list can be found in appendix 3).

7.2.3 Enquiry details

1. Record of date and time of call The provision of a helpline service obviously has workforce implications. It has always been difficult to assess the amount of time required to manage calls and the level of activity. The triage log sheets were used to monitor the time of the call and could be used to monitor the episode length. Evaluation revealed that the busiest time for calls is between 18.00 and 22.00 hours, with a peak between 20.00 and 21.00 and a drop off during the period 24.00 to 08.00.

This information can be used to understand when demand is greatest and therefore support planning around staffing levels.

Figure 2: Time of call

148/54% 123/45%

3/1% 0

100

200

Male Female Not recorded

Patient num

bers

Patient gender

0

5

10

15

20

25

Num

bers of calls

Time of calls

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Figure 3: Date and time of call recorded

2. Record of who called The information obtained revealed that the patient’s mother usually makes the call to the helpline, with their father being the second most frequent caller; however, 32% of log sheets had no record of the caller’s relationship or identity.

Figure 4: Relationship of caller

3. Record of contact number On 82% of log sheets, the contact number was recorded.

4. Type of review Pilot sites were asked to use the triage tool for patients who presented to the department with a problem and for those who contacted the advice line by telephone. 93% (255) of the assessments were carried out by telephone and 7% (19) were done face

20%

23%

0% 20% 40% 60% 80% 100% 120%

1

2

1 = date of call recorded 2 = time of call recorded

yes

no

2 1 1 2 1

46 1 1

128 1

90

0 20 40 60 80 100 120 140

Relative School A&E Carer

Community nurse Dad/Father Grandad Husband

Mum/Mother Nan

Not recorded

Number of log sheets

Relationship of caller


to face with patients who had called in to the department.

5. Record of reasons for contacting the helpline team The data revealed that the reasons for callers contacting the advice line are many and varied; unsurprisingly, the most common concerns were temperature related (details can be found at appendix 4.P78).

Figure 5: Reasons for contacting the advice line

6. Record of treatment being received

Most patients (65%) were receiving chemotherapy treatment regimens; 17% were on no active treatment. Figure 6: Treatment being received

7. Regimen details

74 25 25 28 29

9 12

4 12

31 6 6

10

0 10 20 30 40 50 60 70 80

Temperature related Rash

Nausea & vomiting Generally unwell

Pain Bowels

Injury/Accident Mucositis

Central line issues Miscellaneous

Bleeding Eye problems

Sign of Infection


Reason for call

1

12

14

22

46

179

0 20 40 60 80 100 120 140 160 180 200

Radiotherapy

Other

Supportive

Not recorded

No active treatment

Chemotherapy


Treatment being received

20

135 log sheets contained regimen information; 139 had nothing recorded. The lack of this information did not affect the quality of the risk assessment, since the triage process is based on the presenting symptoms and not the treatment regimen or disease type (details can be found at appendix 5.P93).

Figure 7 : Regimen information

8. Clinical Trials

Only 12% (n=33) of patients were recorded as being part of a clinical trial. This is perhaps an indication that front line staff did not perceive this as a relevant piece of information or that they are not confident as to which treatments are actually part of a clinical trial. However, advice given would not alter whether or not CYP are on a clinical trial, and so this question was removed from the Log Sheet

9. Record of time since last treatment episode 42% of patients had received treatment called within 7 days, 30% of log sheets had no record of time of last treatment; this may indicate that no treatment had been given at all or for some time, or simply denote a failure on the part of the practitioner to complete the log sheet. Figure 8 : Time since last treatment episode

0 10 20 30 40 50 60 70 80 90 100

Chemotherapy Clinical trials

Post bone marrow transplant Off, completed or not commenced treatment yet

No active treatment Surgery

Some information but not regimen Illegible data

Diagnosis instead of regimen


`Inform

ation recorded

0 20 40 60 80 100 120 140

1 to 7 days

8 to 14 days

15 to 28 days

over 4 weeks

not recorded

Log sheet numbers

Time since treatment


10. Record of temperature The log sheet asks: What is the patient’s temperature? The aim of this question is to obtain an accurate recent reading of the patient’s temperature to inform correct decision-‐making. 65% (n=179) of the staff completing the assessment recorded a temperature reading; 35% (n=83) had no recording of temperature and no reason for not recording. The form was either left blank at this point or one of the following statements was used to describe the patient’s temperature:

• OK

• Not taken

• Normal

• Not applicable

• Feels cool

• Doesn't feel hot

• Cool to touch

• Apyrexial

• Afebrile

• >38

• <37.5 This would not be sufficient evidence if decision making was questioned.

11. Record of the date of last blood test and result • 59% (n=162) of log sheets contained the date of last blood test; all but 6% (n=9)

gave details of blood results

12. Does the patient have a central line? • The majority (73%) of log sheets recorded that the patient had a central venous

access device in place

7.3 Assessment evaluation Log sheets were considered to be correctly filled in if they contained a fully completed red, amber, green risk assessment and scoring.

Figure 9: Correctly completed risk assessment tool record

22

The staff who did not complete the risk assessment fully failed to demonstrate a full assessment of the patient and would not be able to provide evidence of quality and safety if called upon to do so, especially if they had advised the patient to stay at home. The 74% (n=202) of log sheets with correctly completed risk assessments were used to evaluate the safety of the tool and the actions of those using it.

7.3.1 Red, amber and green triggers per problem

Evaluation has allowed us to highlight the most common problems and their severity/grading. Unsurprisingly, abnormal temperature is the most common cause of a red trigger followed by decreased activity and pain. The most common amber triggers are decreased activity and pain. Information such as this could be used to develop targeted information and education for CYPs, carers and staff.

Figure 10: Record of red, amber and green triggers per problem

202

7

65

assessments correctly completed

partially completed

not completed

0 50 100 150 200 250

Correctly

completed

Log sheet numbers

0

20

40

60

80

100

120

140

160

180

200


7.3.2 Risk assessment results

Figure 11: Risk assessment results

The chart shows that 55% of patients who contacted the helpline should have been asked to attend for assessment and review, 29% should have been followed up either by telephone or face to face via an arranged clinical review, and 16% required only reassurance and advice. A small number of patients within this group (n=4) contacted the helpline with a problem not listed in the risk assessment; this should be categorized as OTHER – they were asked to attend for assessment. Problems were recorded as dizziness x2, reservoir problem x1 and cough x1. These results were comparable with the results of the adult Tool Kit pilot (UKONS 2010),

7.3.3 Red triggers Red triggers – Any toxicity graded here takes priority, and action should follow immediately. CYP/carers should be advised to attend for urgent assessment as soon as possible.

36% of patients assessed had one or more red triggers the majority (96%) of this group was asked to attend hospital for assessment.

66% (n=47) of the log sheets recorded follow up/outcome; the results are as follows:

• 72% (n=34) of patients were admitted for further care and observation

• 7% (n=3) of patients were discharged following review, one of which was re-‐admitted within a short period of time as an emergency

• 21% (n=10) of patients were reviewed and received an intervention, such as oral antibiotics or analgesia prior to discharge.

Figure11: Recorded action/outcome for red triggers

The information available on the 4% (n=3) of red trigger patients who were not asked to attend revealed the following:

72/36% 39/19%

59/29%

32/16%

0 10 20 30 40 50 60 70 80

Red Amber + Amber Green


Result

72%

7%

21%

0 5 10 15 20 25 30 35 40

admitted

Review & discharged

Review,intervention & discharged

Patient %

Outcome/action

24

• 1 action not recorded

• 1 advised paracetamol and follow up the next day; appropriate as condition improved

• 1 urinary incontinence reviewed the following day Red trigger and pyrexia

71% of patients with a red trigger had pyrexia of 38.10c or above. Pyrexia is a significant indicator of risk and should always be investigated fully; most CYP (65%) who presented with pyrexia were admitted. This figure may be higher, but 17% of these log sheets had no outcome recorded.

Figure12: Outcomes for red triggers with pyrexia

Red triggers with no pyrexia

Though it is recognised that the presence of pyrexia in a patient who may be immunocompromised is a significant indicator of risk, it is clear from the information collected on the log sheets that it is not the only indicator; 29% of patients had no pyrexia but recorded a red trigger due to other problems. 45% of this CYP group was admitted following review; this figure may have been higher since 34% of the log sheets had no outcome recorded. This evidence supports the holistic assessment process of the triage tool in identifying possible risk. Incomplete records

Unfortunately 34% (n=24) of the red trigger group had no follow up or outcome reported on the log sheet. This highlights two important points:

1. It is difficult to assess the safety and quality of the service provided if the outcome/end point of the service is not recorded

2. It is vital that professionals using the Tool Kit understand the importance of completing the process from both a clinical governance and professional competence point of view

Conclusion for red triggers Data collected demonstrate that the majority (96%) of patients who had a red trigger were asked to attend hospital for assessment.

Of the patients with a recorded follow up, this action was appropriate since 72% required admission and 21% required intervention prior to discharge.

7.3.4 Two or more amber triggers Two or more toxicities graded amber should be escalated to red action and patients advised to attend for urgent assessment. 19% of log sheets had two or more amber triggers recorded.

32

8

6

2

1

0 5 10 15 20 25 30 35

admit

no follow up

review and home

paracetamol

telephone review

Patient numbers


The results of this group of patients are as follows:

• Most (85%) of this group was asked to attend hospital for assessment • 13% (n=5) of patients were managed at home with either advice and telephone follow up

or primary care outreach cancer nurse review • 1 patient who received primary care review was then admitted for ongoing management

and 1 patient had a planned review the following day at the cancer centre • 1 log sheet had no record of advice or action taken

Figure13: Recorded action/outcome for 2 or more amber triggers

The majority of the patients asked to attend came to the principal treatment centre, but some patients were asked to attend their local POSCU:

• 3% (n=1) of the CYP who were asked to attend did not; they were followed up by the nursing team with a telephone call.

• 30% (n=10) of patients were admitted for ongoing management • 37% (n=12) had medical review and intervention prior to discharge home e.g. oral

antibiotics or analgesia • 9% (n=3) had medical review and assessment with no record of intervention • 21% (n=7) of log sheets had no record of follow up or action taken on arrival for review

Conclusion for two or more amber triggers

A significant number of CYPs and carers (19%) who contact triage advice lines may not report a single overwhelming problem, but will have a number of low grade problems. The cumulative significance of these problems is demonstrated in the results above. 85% of the patients in this group were asked to attend hospital for assessment. The correctly completed record of follow up or action taken show that 38% of patients required admission for further management, 46% were reviewed and received intervention and 12% were reviewed with no record of intervention. This demonstrates the need for a methodical, rigorous assessment of all patients who contact helplines to ensure that significant signs and symptoms are not overlooked. Unfortunately, 21% (n=7) of the log sheets had no record of follow up, highlighting again the need for improved record keeping, as the evaluation may have been more accurate if all relevant information had been recorded. Better record keeping would also improve governance and accuracy of patient records.

Figure 14: Outcomes of correctly completed 2 + Amber Log sheets

attend

managed at home

no record

0 5 10 15 20 25 30 35

Action recorded

Number of patients

26

7.3.5 One amber trigger

One toxicity in the amber area should be followed up within 24 hours and the caller should be instructed to call back if they continue to have concerns or their condition deteriorates during the 24-‐hour period. A follow-‐up clinic appointment within 24 hours may be an acceptable alternative to a follow-‐up telephone call. 29% of log sheets had one amber trigger recorded. 72% (n=42) of the one amber group were managed by the triage practitioner, with advice and support given over the telephone; 28% attended for assessment.

Figure 15: Recorded action/outcome for 1 amber triggers

Assessment outcomes

Outcomes of the 28% (n=16) of patients who were asked to attend for review/assessment:

1. 75% (n=12) discharged 2. 19% (n=3) admitted

3. 6% (n=1) seen and outcome not recorded

It should be noted that two of the patients who attended for review/assessment did so at the request of the relative/carer.

Reasons for admission:

• 1 received a blood transfusion • 1 had a platelet transfusion • 1 received Intravenous antibiotics for a Hickman line problem

Figure 16: Outcomes of correctly completed 1amber patients asked to attend for assessment

1/4%

10/38%

12/46%

3/12%

did not attend

admitted

review + intervention

review with no record of intervention

0 2 4 6 8 10 12 14

Outcomes

Patient numbers

42/72% 16/28%

Reassurance and advice

Review

0 5 10 15 20 25 30 35 40 45

Action/outcome

Patient numbers


Recorded outcomes for the one amber patients who remained at home are as follows:

• 5% (n=2) called back with rising temperature and were asked to attend for review

• 21% (n=9) had no follow up recorded

• 31% (n=13) had a planned clinical review

• 43% (n=18) had telephone follow up None of the 74% of patients who had a planned clinical review or telephone follow up went on to admission.

Figure 17: Outcomes for the one amber patients who remained at home

Conclusion for one amber triggers The majority of patients (75%) with one amber trigger were managed in their homes with telephone advice or referral to the primary care team; 31% (n=13) of patients were considered safe to have a review arranged for the following day.

A small proportion of patients in this group were asked to attend for urgent assessment; these patients usually had a concurrent (other) problem to the one amber score. Only three patients were subsequently admitted to hospital.

The Tool Kit assessment process correctly identified most patients as being safe to stay at home or have a booked review within normal working hours, so avoiding unnecessary emergency assessment and possible admission.

7.3.6. Green triggers Those who record all green triggers should be reassured that their problem is not urgent; they should be advised to be vigilant and instructed to call back if they continue to have concerns or their condition deteriorates. 16% (n=32) of the log sheets identified the patients as having all green triggers

75%

19%

6%

Discharged

Admitted

Not recorded

0% 10% 20% 30% 40% 50% 60% 70% 80% Outcomes of 1

amber attendees

Patients attending

2/5% 9/21%

13/31% 18/43%

Called back follow up not recorded

Planned review telephone follow up

0 2 4 6 8 10 12 14 16 18 20 Outcomes for 1

amber patients

who rem

ained at

home

Patient numbers

28

• 81% (n=26) of this group was told to stay at home and given advice and reassurance about continued observation and care

• 6% (n=2) of the patients were referred to their local trusts o Patient 1 – for reinsertion of naso-‐ gastric tube o Patient 2 – for a blood transfusion

• 13% (n=4) of the patients attended for review o Patient 1– received a neurosurgical review for a reservoir problem; seen and

discharged o Patient 2 – had conjunctivitis; antibiotics prescribed and then patient discharged o Patient 3 – was asked to attend as a blood transfusion was thought possibly

necessary, but no outcome was recorded o Patient 4 – was admitted for observation overnight at concerned father’s request;

patient was observed overnight, but required no intervention and was discharged the following day.

Figure 18: Green trigger action taken

Green trigger follow up 84% (n=27) of the log sheets had a follow-‐up review recorded.

Details of the follow up and actions taken:

• 48% (n=13) of patients had a telephone follow up by a member of the nursing team

• 33% (n=9) of patients had a planned follow up/review in clinic

• 8% (n=2) required no further intervention

• 3% (n=1) of carers called back as the patient had a raised temperature; these patients were admitted for observation overnight and then discharged

• 8% (n=2) of patients were referred to teams managing their care for further follow up

Two of these log sheets gave excellent examples of secondary and primary care integrated working:

• On one occasion, a paediatric oncology outreach nurse specialist was asked to visit to reinsert a nasogastric tube and amend an antiemetic prescription

• On the other occasion, paediatric oncology outreach nurse specialist was asked to visit and assess the following day and review the patient

Figure 19: Green trigger follow up

26 2 4

Reassurance refer to local trust

review

0 5 10 15 20 25 30 Action taken

Number of patients


Conclusion for green triggers

Most patients identified as all green triggers were safely left at home or were directed to primary care teams for support (81%). Of the small number of patients asked to attend for urgent assessment, two had a problem that would not be considered to be disease or toxicity related, but would require urgent assessment e.g. reservoir or nasogastric tube problem. Neither of these patients went on to be admitted. The patient who had conjunctivitis should probably have been triaged as an amber trigger; this omission should be addressed by further training.

7.3.7. Review of all recorded follow up Patients who record one amber trigger but are otherwise all green should be followed up within 24 hours and the caller should be instructed to call back if they continue to have concerns or their condition deteriorates. They should be re-‐assessed at follow up and action modified if required. The follow-‐up process will identify patients who are not improving or getting worse and increase safety in this group. Patients who record all green triggers are not officially added to the follow-‐up process.

Follow-‐up action or log sheet review was recorded on 82% (n=226) of the total 274 log sheets received. Figure 20: Recorded follow up

The table below shows the numbers of patients who remained at home following assessment and had recorded follow up, according to triggers. Figure 21: Recorded follow up for those patients managed at home according to triggers recorded

48%

33%

8%

3%

8%

telephone follow up

planned clinical review

No further intervention

carer call back-‐ assessment required

refer to care team for follow up

0 2 4 6 8 10 12 14

Follow up

Number of patients

0 50 100 150 200 250

follow up

no follow up

Number of patients

Recorded

follow up

30

Conclusion

Home care advice with arranged telephone or clinical follow up was appropriate in this group of patients:

• 95% (n=61) of this group of patients had either improved or showed no change

• 3% (n=3) of this group called back following deterioration of their condition and were asked to attend for urgent assessment and review

• 2% (n=1) of this group were reviewed by a member of the specialist primary care team and then asked to attend hospital for review

Figure 22: Outcomes for those patients initially managed with home care advice

The Tool Kit triage process is correctly identifying patients who do not require urgent admission, and the follow-‐up process is allowing a planned approach to problem management, directing patients for appropriate review if required.

There were no reports of adverse events or concerns relating to advice given or actions taken as a result of using the Tool Kit from any of the pilot sites during the pilot.

7.3.8 Assessment and admissions Assessment

61% (n=124) of the patients who contacted the helpline and had a correctly completed assessment were asked to attend hospital for assessment. 26% (n=32) of the log sheets in this group did not record follow up or outcome.

The results of the 74% (n=92) of log sheets that were correctly completed are as follows:

• 52% (n=48) were admitted

• 26% (n=25) were assessed and discharged following intervention

84%

74%

13%

2%

Percentage of follow up patients according to trigger

95%

3%

2%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

improved or showed no change

called back following deterioration of their condition

reviewed by the specialist primary care team

Percentage of patients

Outcomesfor homr

care advice patientss


• 22% (n=18) were reviewed and discharged

Figure 23: Assessment results from correctly completed log sheets

Admissions

Of this group:

• 71% (n=34) presented with red triggers

• 21% (n=10) presented with two or more amber triggers

• 6% (n=3) presented with one amber or/and a concurrent problem not listed on the assessment sheet; one of this group was admitted for transfusion and one had a problem with a central line

• 2% (n=1) presented with all green triggers; this patient was admitted overnight for observation at concerned father’s request

Conclusion 52% (n=48) of patients who were asked to attend for assessment were subsequently admitted to hospital and, of this group, 92% had either scored red triggers or been escalated to red with multiple amber triggers. The tool is identifying patients who require assessment consistently and appropriately.

7.3.9 Who completed the log sheet and assessment? 97% of log sheets were signed and dated; there was a printed name on only 52%. Signatures were not always decipherable and the lack of clearly printed information regarding who provided the advice and guidance to the patients raises clinical governance concerns around traceability and accountability. All log sheets were completed by members of the nursing team; these were most often Band 6 or Band 5. Figure 24: Grade of staff completing the triage assessment

admit review+ intervention review /discharge

0 10 20 30 40 50 60 Assessent

results

Number of patients

32

7.3.10 Associated data

• Consultant team informed of call -‐ only 43% (n=117) of the sheets recorded that the consultant’s team had been informed of the call; 77% (n=90) of these included the date they were informed

• Signature at follow up – was included in only 42% (n=114) of log sheets • Date of follow up -‐ was recorded in only 69% (n=189) of log sheets

The failure of staff to fully complete this record raises once again governance concerns relating to traceability and accountability.

7.3.11 Grade of staff completing the follow-‐up process

Figure 25 shows which members of the multidisciplinary team were involved in the follow-‐up process. The evaluation of the sample log sheets for this report has proved the value of capturing these data, which have revealed information that will guide and support the development of the specialist CYP telephone triage service. Figure 25: Grade of staff completing the follow-‐up process

5 1 1 7

17 13 18 15

2 3

11 1

124 3 8

0 20 40 60 80 100 120 140

Band 8 Lead Leukaemia Sister

CNS Band 7 Sister

Sister band 6 Junior Sister

Band 6 Staff Nurse Senior Staff Nurse

Senior Nurse Band 6 RGN Band 6

BMT Staff Nurse Staff Nurse

RNC Not recorded

Numbers of log sheets

Grade of staff


8.0 Questionnaire evaluation

Practitioners involved in the pilot process were asked to complete a questionnaire designed to assess user experience. The questions reflected the aims and objectives of the Tool Kit. The results are illustrated in the graphs below.

The questionnaires were completed anonymously; 24 were returned. Q1 How long have you been caring for paediatric oncology/haematology patients?

96% of nurses answering the advice line had more than 3 years’ experience of working within CYP oncology.

Q2 Please indicate your area of work and speciality 75% of nurses completing the questionnaire worked in a Principal Treatment Centre (PTC) and 17% worked in Paediatric Oncology Shared Care Units (POSCUs).

Q3 Prior to being involved in the pilot, did your trust have a 24-‐hour helpline?

79% of nurses completing the questionnaire confirmed that their trust had an advice line prior to be being involved in the pilot

Q4 Prior to being involved in the pilot, did you use any other tool for assessing

78

64 63

23

1 1 1 1 2 5 3 5 14

0 10 20 30 40 50 60 70 80 90

Num

ber of staff

Grade of staff

34

patients contacting the helpline?

Prior to the pilot 75% of nurses answering the advice line did not use any tools to help with assessment and decision-‐making 17% sometimes did and 8% always did.

Q5 Was the design and layout of the Tool Kit satisfactory? 100% of those completing the questionnaire responded ‘yes’ to this question

Comment: One person commented that it just could do with the print being slightly bigger

Q6 Did you find any parts of the new tool difficult to understand?

100% of those completing the questionnaire responded ‘no’ to this question

Q7 Did you feel the training you received to use the Tool Kit was adequate?

100% of those completing the questionnaire responded ‘yes’ to this question

Q8 Did you find the tool easy to use?

96% of nurses completing the questionnaire found the tool easy to use Comment: One person commented that it was time consuming to complete in busy periods

Q9 Did you find the Assessment Pathway Flow Chart helpful?

96% of nurses completing the questionnaire found the Assessment Pathway Flow Chart helpful

Q10 Did you find the use of the traffic light colouring system (red, amber, green) on the Assessment Tool Poster helpful?

96% of nurses completing the questionnaire found the traffic light colouring system (red, amber, green) on the Assessment Tool Poster helpful

Q11 Did you understand the way in which the questions on the Assessment Tool Poster were written?

96% of nurses completing the questionnaire understood the questions on the Assessment Tool Poster

Q12 Did the Assessment Log Sheet capture all the information required for the assessment process?

96% of nurses completing the questionnaire felt the log sheets captured all the information required for the assessment process


Comments: Two comments were received, one person would have like more free space to add information and one felt that other conditions were not accounted for i.e. jaundice, diabetes, behavioural issues or questions/queries re: medication.

Q13 Was the duplicate sheet helpful? 83% of nurses completing the questionnaire felt the duplicate log sheets were useful

Comments: Five comments were received all related to poor quality of transfer of information to the duplicate sheet.

Q14 During the pilot, did you feel more confident about managing the helpline? 42% of nurses completing the questionnaire felt more confident about managing the helpline

Comment: One person commented that they felt more confident in the questions to ask however it would not necessarily change my actions in terms of getting patients in for R/V. If I felt it necessary to get them in I would if only 1 x orange tick

Q15 Did you feel that the tool allowed you to keep an accurate record of your decision-‐making process and actions taken?

96% of nurses completing the questionnaire felt that the tool allowed them to keep an accurate record of their decision-‐making process and actions taken

Comments: Two comments were received, one person felt that using the tool provided more thorough documentation of calls received and permits standard process for all another felt that there was a clear log for information when & how to follow up & space to document this the following day.

Q16 Did you have staff time allocated to follow up advice line patients? 59% of nurses completing the questionnaire did not have any specific time allocated to complete the follow-‐up process for patients who had contacted the advice line

Comments: Four comments were received o Ward Manager & PF did follow ups

o As the Pilot Co-‐ordinator I was responsible for follow-‐up calls o Managed them within our own workload, which I personally did not find difficult to

manage

o Sometimes difficult if busy or staffing numbers low Q17 Was follow up a useful conversation?

Figure 25: Was follow up a useful conversation?

36

Q18 Do you feel that the Tool and associated training would be a useful process for junior members of staff?

100% of those completing the questionnaire responded ‘yes’ to this question

General comments received:

• Provides structured, good awareness approach to managing symptoms as an effect of cytotoxic treatment & complications

• Follow up often not with families but with staff who reviewed patients

• I believe the Manager should decide which Band 5 staff could use the tool; the more experienced trained staff and not junior would be my suggestion

• Very time consuming to complete (& complete in order) has caused unnecessary visits

• In some cases I found the assessment sheet time consuming and labouring a decision might have been made earlier in the call when allowing the caller to get to the point rather than progressing through the tool-‐kit however for consistency of assessment & advice I can see the benefits in using the tool especially for junior members of staff

• 2 staff queried initials POSCU

8.1 Grade/discipline of staff completing the questionnaire Band 6 nurses completed most questionnaires

Figure 26: Grade/discipline of staff completing the questionnaire

4%

54%

21%

21%

0 2 4 6 8 10 12 14

never

sometimes

no answer

always Was follow up a useful

conversation

0 2 4 6 8 10 12 14 16 18

band 8

band 7

band 6

band 5

Number of staff

Grade of staff


8.2 Questionnaire conclusion

Most questionnaires were completed by band 6 nurses who had more than 3 years’ experience of working within CYP oncology and worked in a Principal Treatment Cancer Centre, though a small number worked in a POSCU. 79% confirmed that their trust had an existing advice line service, though the majority had no formal process or tools to help with assessment and decision-‐making. User feedback was extremely positive. Users approved of the Tool’s design and layout, and reported that they did not find any part of the Tool difficult to understand, though one person would have liked larger print. Almost all (96%) users found the Tool and its elements easy to use and helpful.

When asked about levels of confidence, 42% of nurses completing the questionnaire felt more confident about managing the helpline with the Tool to hand. It may follow that the experienced practitioners may have an existing level of confidence; in this case, the Tool may be relevant to them as a well-‐documented record of the advice line process and a checklist. To those who are not so confident or experienced, it is a reassuring process that will help them to methodically assess the patient and take appropriate action.

User feedback regarding the record keeping process and use of the log sheet was very positive, with 96% of nurses stating that use of the tool allowed them to keep an accurate record of their decision-‐making process and actions taken; they also felt the log sheets captured all the information required for the assessment process.

There were comments on the positive impact of a standard process for all and the benefits of a clear log for information. Though the feedback was overwhelmingly positive, there were a small number of concerns raised:

• The quality of the duplicate log sheets caused increased work for the pilot sites and should be addressed prior to implementation

• Two members of staff commented that the process was time consuming. Feedback received from areas that have implemented the adult version of the Tool Kit informs us that the time taken to complete the process improves with experience and that the structure it gives to the process can then shorten the assessment time. One of the two users who made this comment did appreciate the benefits of the process in terms of consistency of assessment and advice and the advantages of using the tool especially for junior members of staff

59% of nurses completing the questionnaire did not have any specific time allocated to complete the follow-‐up process for patients who had contacted the advice line; one person commented that it was sometimes difficult to find capacity if busy or staffing numbers were low. 100% of those completing the questionnaire felt the training they received prior to using the Tool was adequate; they also felt that the Tool and associated training would be a useful process for junior members of staff.

9.0 Evaluation summary and conclusions

The aim of the evaluation was to consider and report on the data collected to assess whether or not the Tool Kit achieved its primary objectives

The Tool Kit aims to provide:

• Guidance and support to the practitioner at all three stages;

38

1. Contact and data collection

2. Assessment/definition of problem

3. Appropriate intervention/action

• A simple, reliable assessment process • Safe, understandable advice • Communication and record keeping • Competency based training • An audit tool

The conclusions, key points and actions arising from the evaluation of the pilot process are outlined below. 9.1 Log sheet data collection and record keeping

274 log sheets were returned for evaluation. 74% (n= 202) of these log sheets were considered correctly completed, since they contained fully populated red, amber, green risk assessment and scoring information.

The triage practitioner’s assessment of the presenting symptoms is key to the process, and a record of their decision-‐making is essential for the continuity, quality and safety of care.

Personal identification and disease data was generally well collected. These data are important from a specific enquiry point of view but also useful when auditing the advice line, providing information relating to the range of patient groups requiring services, such as:

• Age

• Gender

• Diagnosis

• Problem/reason for call

• Treatment status

Disciplined collection and audit of these data highlights problem areas and/or areas of high risk, prompting possible service review and improvement.

The provision of an advice line service obviously has workforce implications. It has always been difficult to assess the amount of time required to manage calls and the level of activity. The triage log sheets were used to monitor the time of the call and could be used to assess episode length. This information highlights times of greatest demand and supports planning around staffing levels.

Though the majority of log sheets contained correctly completed assessment processes, there are areas of concern throughout regarding the poor quality record keeping. For example:

• 35% of log sheets had no recording of temperature and no reason for not recording

• 50% of log sheets had no record of treatment regimen

• 32% had no record of caller relationship or identity The lack of regimen details did not affect the quality of the risk assessment as this process is based on the presenting symptoms and not the treatment regimen or disease type; however, the lack of a current temperature reading is worrying as is the poor record of caller identity.


The failure to make a complete record of the process is an important governance issue:

• On an organizational level this information may be required as evidence in the case of root cause analysis/incident investigation.

• On a personal level this information is a safe and understandable record of information available to the practitioner at the time of assessment and a record of the practitioners’ decision-‐making processes

On a positive note, the successful collection of data has allowed us to look at the volume, times and type of calls received and has provided valuable information about the quality and consistency of the assessment process. If the triage tool was introduced and implemented fully it would provide ongoing data relating to:

• Common complaints and concerns from patients and carers

• Capacity and demand for the advice line service

• Quality and governance However, the process has raised concerns about the poor record keeping and collection process in some cases. This may be due to a number of factors:

• Lack of understanding of the triage process on the part of the practitioner

• Lack of protected time to complete the process fully

• Lack of commitment/confidence in the value of the process

• Lack of recognition of the importance of accurate record keeping for both personal and organizational governance reasons

The factors above should be considered carefully and addressed by service review and a programme of training and education, prior to introducing this standardized process. This would support successful implementation by removing barriers and promoting the significance of this process as a step in the patients care pathway.

It is also of note that prior to the pilot of the tool there were little or no data collected routinely and no standardized collection or audit process. This fact makes it very difficult if not impossible to assess the improvement in quality of data collection and reporting during the pilot, but we could assume that by adopting this new tool we would be able to assess and compare the quality of data collection and record keeping within and across organizations in the future.

A standardised format for recording telephone consultations will support the triage process in the following ways:


• A communication tool that will relay an accurate picture of the problem and action taken at the time of assessment to the other members of the healthcare team

• A record of the process for quality, safety and governance purposes

9.1.1. Modification/amendments to the log sheet Feedback received following the pilot, regarding the information requested on the log sheet, has led to the following amendments:

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1. Treatment options will be: Chemotherapy/Radiotherapy/Post Bone Marrow Transplant (BMT) or Stem Cell Rescue/Surgery/Supportive/None

2. If on Chemotherapy, go on to Tick Box Option of: Maintenance therapy

9.2 Quality and safety of patient assessments Most log sheets (74%) had correctly completed risk assessments that were used to evaluate the safety of the Tool and the actions of those using it.

According to the Tool, 55% of patients who contacted the helpline should have been asked to attend for assessment and review, 29% should have been followed up by either a telephone call or arranged clinical review, and 16% required reassurance and advice but could stay at home. These results were comparable with the results of the adult pilot, in which 50% of callers should have been asked to attend for assessment and review, 30% followed up and 20% managed with reassurance and advice. Data collected demonstrate that most (96%) patients who had a red trigger were asked to attend hospital for assessment. Of the patients with a recorded follow up, this action was appropriate as 72% required admission and 21% required intervention prior to discharge. The majority of patients in this trigger group (71%) had pyrexia of 38.10c or above recorded, and 65% were admitted for ongoing care; this figure may be higher, but 17% of the log sheets had no outcome recorded.

Though it is recognised that the presence of pyrexia in a patient who may be immunocompromised is a significant indicator of risk, it is clear that it is not the only risk indicator; 29% of patients had no pyrexia, but recorded a red trigger due to other problems. 45% of this group was admitted following review, this figure may have been higher as 34% of these log sheets had no outcome recorded. This evidence supports the holistic assessment process of the triage tool in identifying possible risk.

A significant number of CYPs/carers (19%) contacting the triage advice line did not report a single overwhelming problem, but had a number of lower grade problems, recognized as two or more amber triggers. The cumulative significance of these problems was demonstrated in the results. 85% of the patients in this group were asked to attend hospital for assessment. The log sheets containing correctly completed follow up and action taken show that 38% of patients required admission for further management, 46% were reviewed and received intervention and 12% were reviewed with no record of intervention. This demonstrates the need for a methodical, rigorous assessment of all patients who contact helplines to ensure that significant signs and symptoms are not overlooked. Unfortunately 21% (n=7) of these log sheets had no record of follow up. Most patients (72%) with one amber trigger were managed in their homes with telephone advice or referral to the primary care team: 5% (n=2) of patients called back with rising temperatures and were then admitted for assessment; 74% of these patients had a planned clinical review or telephone follow up and none of them went on to admission. 28% of patients in this group were asked to attend for urgent assessment; these patients usually had a concurrent (other) problem to the one amber score—75% were discharged following review and 19% subsequently admitted to hospital.

The Tool Kit assessment process correctly identified the majority of these patients as being safe to stay at home or have a booked review within normal working hours, so avoiding unnecessary


emergency assessment and possible admission.

The majority of the 16% of patients identified as all green triggers were safely left at home or directed to primary care teams for further support (81%). Of the small number of patients asked to attend for urgent assessment, two had a problem that would not be considered to be disease or toxicity related, but would require urgent assessment e.g. reservoir or nasogastric tube problem. Neither of these patients went on to be admitted. The patient who had conjunctivitis should probably have been triaged as an amber trigger; this omission should be addressed by further training. A total of 61% (124) of the patients who had a correctly completed triage risk assessment were asked to attend hospital for review/assessment. 52% of those asked to attend for assessment were subsequently admitted to hospital; of this number 92% had either scored red triggers or been escalated to red with multiple amber triggers. 6% presented with one amber or/and a concurrent problem not listed on the assessment sheet. 2% presented with all green triggers. A significant number of patients asked to attend for review had scored only one amber or all green triggers: the majority of these patients were discharged following review.

There may be a number of reasons for these actions:

• A lack of confidence in the Tool by the practitioner, which may build with experience

• Carer request for review for reassurance

• Practitioners sixth sense or concerns relating to the family/patient history

• A problem identified that is not listed on the assessment tool

All of the above are valid reasons to invite the patients/carers to attend for assessment in this vulnerable and sometimes unpredictable patient group.

82% (226) of the log sheets reviewed had follow up or log sheet review recorded; 28% of these patients had a documented telephone or arranged clinic/OPD follow up recorded on the log sheet. Home care advice with arranged telephone or clinical follow up was appropriate in this group of patients as the majority (95%) had either improved or showed no change; 4% (n=3) of this group were asked to attend for urgent assessment and review as they had either called back with worsening symptoms or had been advised to attend following primary care review.

The Tool Kit triage process is correctly identifying patients who do not require urgent admission and the follow up process is allowing a planned, monitored approach to problem management, directing patients for appropriate review if and when required. There were no reports of adverse events or concerns relating to advice given or actions taken as a result of using the Tool Kit from any of the pilot sites during the pilot.

9.3 Who manages the advice line and follow-‐up telephone calls? All of the log sheets were completed by nursing staff most of whom were band 6 or band 5. 97% had signed and dated the log sheet, whilst only 52% had printed their name.

Many disciplines within the medical and nursing team took part in the review of log sheets and follow-‐up process, though most were band 5 and 6 nurses. Only 42% of staff recorded their name at follow up and 30% did not record their discipline. Signatures were not always legible and the lack of clearly printed information regarding who

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provided the advice and guidance to the patients raises clinical governance concerns around traceability and accountability.

9.4 Incomplete records Though the majority of log sheets reviewed contained the required information for completion of the risk assessment process, there is a level of concern about the quality and completion of log sheet records. The staff who did not complete the risk assessment fully (26%) failed to demonstrate a full assessment of the patient and would not be able to provide evidence of quality and safety if called upon to do so, especially if they had advised the patient to stay at home. A number of log sheets did not contain important relevant clinical information, such as accurate recording of the patient temperature or action taken following assessment. Other examples include: no follow up or outcome records, no record of who called or who took the call. The evaluation may have been more accurate if all relevant information had been recorded. Better record keeping would also improve governance and accuracy of patient records. It is difficult to assess the safety and quality of the service provided if the outcome end point of the service is not recorded. It is vital that professionals using the Tool Kit understand the importance of completing the process from both a clinical governance and professional competence point of view.

10.0 Recommendations The pilot and evaluation of this Tool has shown it to be reliable, robust and valuable. It should be used as a planned standardized approach to triage and assessment, providing:

• An evidence based assessment tool

• A log sheet that acts as a check list to prompt practitioners and is a clear format for recording triage and assessment, supporting communication

If implemented, the Tool would support consistency of advice, and consistency of service across POSCUs and PTCs as well as between centres. It sets a standard for best practice and is an excellent training and educational resource.

The pilot has proved its value as an audit tool, allowing rich data to be collected and reviewed, not only within a single organization but shared across boundaries. Review of such information could lead to increased understanding of advice line services and significant improvements in healthcare delivery and patient care. The tool can be used to provide evidence of quality and safety for both the organization and the individual practitioner. It is also useful in identifying risks and poor practice, helping to determine education and training needs. The Tool has been positively evaluated by those using it who found it easy to work with and understand, and recognized its worth as a standard process. There are a number of factors to consider when planning implementation:

• Organisational approval and agreement should be sought as the governance responsibility sits with the user/organisation

• Clear decisions should be made about the triage pathway, identifying admission/assessment areas and triage practitioners/who will provide review and follow-‐up calls


• A plan for education, training and competency assessment—this could be shared across organisations. This is a vital step in the process; users need to have a clear understanding of the value of the tool and the risk to the patient and themselves if it is not used properly

• Regular audit and quality review of all data collected—consider electronic data collection

• Governance process—as with any service, the advice line will need to be policed and reported

The pilot and evaluation of this tool has shown that the group has developed triage guidelines that could be adopted as a national standard and would:

1. Improve patient safety and care by ensuring that everyone receives a robust, reliable assessment every time they or their carers contact a helpline for advice

2. Those assessments are of a consistent quality and use an evidence-‐based assessment tool 3. Provide management and advice appropriate to the patient’s level of risk, to ensure that

those patients who require urgent assessment in an acute area are identified and that appropriate action is taken, but also to identify and reassure those patients who are at lower risk and may safely be managed by the primary care team or a planned clinical review and avoid unnecessary attendance

4. To develop guidelines that would form the basis of triage training and competency assessment for practitioners

5. To maintain accurate records of the assessment and decision-‐making process in order to monitor quality, safety and activity

The development group will need to plan how they would support implementation.

There will be requirements around design, distribution, education and training and funding. There should be a plan for the regular review and update of the tool and a clear understanding of who will be responsible for this process. The assessment of service user satisfaction would be a useful measure of quality and should be considered as part of the regular review programme.

11.0 References Anastasia, P.J. (2002) ‘Telephone triage and chemotherapy system management in the ambulatory care setting’, Oncology supportive care quarterly, 1 (1): 40-‐53. Courson.S. (2005) What is Telephone Nurse Triage. Connections Magazine.

https://vatlc.wordpress.com/2010/11/26/what-‐is-‐telephone-‐nurse-‐triage/ (Last accessed 12th May 2015) Department of Health (2009), Cancer reform strategy: achieving local implementation -‐ second annual report

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_109339.pdf (Last accessed 12th May 2015)

Department of Health (2015), The NHS Constitution for England https://www.gov.uk/government/publications/the-‐nhs-‐constitution-‐for-‐england/the-‐nhs-‐constitution-‐for-‐england (last accessed 24th February 2016)

Department of Health (2006) The acutely or critically sick or injured child in the District General Hospital: A team response

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Harding,K, Taylor,N, Leggat,S (2011) Do triage systems in healthcare improve patient flow? A systematic review of the literature: Australian Health Review 35(3) 371-‐38.

Johnson, M., Yarbro, C.H. (2000) ‘Principles of Oncology Nursing’, in Holland, J., Frei, E., Bast, R., Kufe, D., Morton, D., Weichselbaum, R. (Eds), Cancer Medicine (4th ed), Baltimore: Williams and Wilkins. Males T, (2007) Telephone consultations in primary care: a practical guide. RCGP 2007. ISBN: 978-‐0-‐85084-‐306-‐4.

National Institute for Health and Clinical Excellence (2005) Guidance on Cancer Services Improving Outcomes in Children and Young People with Cancer. https://www.nice.org.uk/guidance/csgcyp/evidence/improving-‐outcomes-‐in-‐children-‐and-‐young-‐people-‐with-‐cancer-‐manual-‐update-‐2 (last accessed 4th April 2015).

NCAG (2009), Chemotherapy Services in England: Ensuring quality and safety http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_104500 (last accessed 4th April 2015).

NCEPOD (2008), Systemic Anti-‐Cancer Therapy: For better, for worse? http://www.ncepod.org.uk/2008sact.htm (Last accessed 12th May 2015) NHS England: National Peer Review Programme. The Manual for Cancer Services, Children's Cancer Measures (Version 1.1. July 2014). NHS England (2013/14) NHS standard contract for NHS standard service specification template for cancer: chemotherapy (children, teenagers and young adults) B15/S/b. http://www.england.nhs.uk/wp-‐content/uploads/2013/06/b15-‐cancr-‐chemoth-‐child-‐teen-‐yng-‐adul.pdf (last accessed 4th April 2015).

Purc-‐Stephenson RJ, Thrasher C. (2012) Patient compliance with telephone triage recommendations: a meta-‐analytic review. Patient Education and Counselling 2012;87(2):135-‐42 doi: S0738-‐ 3991(11)00470-‐8

Purc-‐Stephenson RJ, Thrasher C. (2010) Nurses’ experiences with telephone triage and advice: a meta-‐ethnography. Journal of Advanced Nursing 2010;66(3):482-‐94 doi: 10.1111/j.1365-‐ 2648.2010.05275.x.

Stacey D, Noorani H Z, Fisher A, Robinson D, Joyce J, Pong R W. (2003) Telephone triage services: systematic review and a survey of Canadian call centre programs. Ottawa, ON, Canada: Canadian Coordinating Office for Health Technology Assessment (CCOHTA). Technology Report; 43. 2003. Available from: http://www.cadth.ca/index.php/en/hta/reports-‐publications (last accessed 4th April 2015).

Sujan,M, Chessum,P, Rudd, M, Fitton,L, Inada-‐Kim,M , Spurgeon,P, Cooke M (2013) Original article. Emergency Care Handover (ECHO study) across care boundaries: the need for joint decision making and consideration of psychosocial history: Emerg Med J 2015; 32:112-‐118 doi:10.1136/emermed-‐2013-‐202977. The NHS Litigation Authority Risk Management Standards 2013 -‐14. www.nhsla.com/ (last accessed 11th March 2016). Towle.E, (2009) Telephone Triage in Today’s Oncology Practice, Journal of Oncology . http://jop.ascopubs.org/content/5/2/61.full (last accessed 4th April 2015).


UKONS (2010) Oncology Haematology 24 Hour Helpline, Rapid Assessment and Access Tool Kit. http://connect.qualityincare.org/__data/assets/pdf_file/0004/467347/eval_ver_6a2.pdf (last accessed 4th April 2015). WHO Collaborating Centre for Patient Safety Solutions (2007) Communication During Patient Hand-‐Overs; Patient Safety Solutions, volume 1, solution 3. http://www.who.int/patientsafety/solutions/patientsafety/PS-‐Solution3.pdf (last accessed 4th April 2015).

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Appendix 1

The Oncology/Haematology Telephone Triage Tool Kit for Children and Young People.

The Tool Kit Manual

Developed by The Children’s and Young People Cancer Nurses Group of the Royal College of Nursing

and the Children’s Cancer and Leukemia Group

Supported by the United Kingdom Oncology Nursing Society and the Royal College of Nursing

Version 1.0 -‐07/03/2016-‐ Final.

Review date: -‐ August 2019


Content

1.0 Introduction and background P3 1.1 Quality of assessment and advice P3 1.2 National guidelines and recommendations P4 2.0 Aims and objectives P5 3.0 Quality and safety P6 4.0 The Tool Kit – content, application and implementation P7 4.1 Instructions for use P7 4.2 The Alert Card P8 4.3 The Triage Pathway Algorithm and Clinical Governance P8 4.4 The Triage Assessment Process and Tool P10 4.4.1 Key points P10 4.4.2 Risk assessment P11 4.4.3 The assessment process step by step P11 5.0 The Triage Log sheet P15 6.0 Training and competency P17 6.1 Target users and competency P17 6.2 The competency assessment P18 6.2.1. Summary P18 6.2.2. Conduct and responsibility P18 6.2.3. Maintaining Triage competency: P19 6.2.4. Scope of the competency assessment P19 6.2.5. Competency assessment record 6.2.5.

P20

References P24-‐25 Appendix 1 – Alert Card example P27 Appendix 2 – Skills for Health information P28-‐30

This publication contains information, advice and guidance, it is intended for use within the United Kingdom (UK) but readers are advised that practices may vary in each country and outside the UK. The information in this manual has been compiled from professional sources. It provides a guideline for practice and is dependent on the clinical expertise and professional judgement of the registered practitioner who uses it. Whilst every effort has been made to ensure the provision of accurate and expert information and guidance, it is impossible to predict all the circumstances in which it may be used. Accordingly, the authors shall not be liable to any person or entity with respect to any loss or damage caused or alleged to be caused directly or indirectly by what is contained in or left out of this information and guidance.

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1.0 Introduction and background

The Oncology/Haematology Telephone Triage Tool Kit for Children and Young People has been developed as a guideline for the provision of triage assessment and advice for staff answering telephone advice line calls.

This guideline provides recommendations for best practice for the appropriate treatment and management of children and young people (CYP) with cancer and serious blood disorders; it should be used in conjunction with the triage practitioners’ judgment. The development group recognised that there was a lack of relevant guidelines and training to support members of the clinical team who were undertaking telephone assessment of patients and providing clinical advice. There is little published evidence regarding CYP oncology/haematology triage, though there is anecdotal evidence regarding the provision of 24-‐hour telephone advice line support for parents and carers in CYP Principle Treatment Centres (PTC) and CYP Paediatric Oncology Shared Care Units (POSCU).

The group found that the advice and support provided at present was reliant on the experience and knowledge of the nurse or doctor answering the call and that although there were local models of good practice they had not generally been validated. There were no tested assessment or decision-‐making tools in use at present. Furthermore documentation and record keeping differs from trust to trust.

The group supported by the Royal College of Nursing (RCN) and the United Kingdom Oncology Nursing Society (UKONS) has adapted the UKONS adult triage tool for use in CYP services. The adapted tool was subject to a pilot in 5 PTCs and 2 POSCUs, which resulted in a very positive evaluation. The pilot was funded by the RCN.

UKONS successfully launched the original version of the tool for the triage of adults in 2010; this is now used widely in the United Kingdom and internationally for the telephone assessment and triage of patients who may be suffering from problems associated with systemic anti-‐cancer therapy, radiotherapy or immunosuppression (UKONS 2010).

1.1 Quality of assessment and advice

The assessment and advice given regarding a potentially ill patient is crucial in ensuring the best possible outcome. Patient safety is an essential part of quality care; each and every situation should be managed appropriately. The function of telephone triage is to determine the severity of the callers’ symptoms or problem and direct the caller to the appropriate emergency assessment area if required or initiate appropriate medical or clinical follow up (Courson, 2005). Telephone triage is an important and growing component of current oncology practice; we must ensure that patients receive timely and appropriate responses to their calls (Towle, 2009).

Telephone triage enables the call handler to have a positive impact on the standards of care. Successful triage will consistently recognise emergencies and potential emergencies, ensuring that immediate assessment and required interventions are arranged. Sujan (2014) found that the most frequent recommendation for improving communication was standardisation through procedures checklists or mnemonics, and appropriate training in their use; all of the above elements are used within the Tool Kit. Triage will also provide ongoing emotional support and care advice (Johnson and Yarbo 2000).


1.2 National guidelines and recommendations

At the outset of this project there were no national guidelines in place to support training and standardisation of CYP oncology/haematology triage. There are however, national recommendations regarding the provision of a telephone triage service:

• The Manual for Cancer Services, Children's Cancer Measures (2014) states that a 24-‐hour telephone advice service should be provided for children and young adults with malignancy and their carers. The measures also recommend that there should be agreed levels of training and qualification for those staff expected to manage advice line calls (NHS England 2013/14)

• NHS Standard Service Specification Template for Cancer: Chemotherapy (Children, Teenagers and Young Adults) states that patients during chemotherapy must be given access to a 24-‐hour helpline (24 hours a day, 7 days a week) for urgent advice about side effects or symptoms of infection from chemotherapy (NHS England 2013/14)

• Recommendations for telephone triage services contained in the Department for Health (DH) report The Acutely or Critically Sick or Injured Child in the District General Hospital: A Team Response (DH 2006) include: Development and implementation of algorithms such as those used by NHS Direct or ambulance services, specific training in the use of these tools and regular audits for compliance The same report also states that it is essential that there are clear lines of communication to access appropriate emergency care teams, clinicians and advice, both within an individual hospital and the network

• The World Health Organisation (WHO) Collaborating Centre for Patient Safety Solutions (WHO 2007) recommends that organisations use a standardised approach to handover and implement the use of the Situation, Background, Assessment And Recommendation protocol (SBAR). The Tool Kit that has been developed adopts this approach and guides the user through the process. This recommendation stresses in particular consideration of the out-‐of-‐hours handover process, and emphasises the need for monitoring of compliance. Standardisation may simplify and structure the communication, and create shared expectations about the content of communication between information provider and receiver (Sujan 2013)

• The NHS Litigation Authority Risk Management Standards 2013 -‐14 require an approved documented process for handing over patients. This requirement stresses in particular consideration of the out-‐of-‐hours handover process, and emphasises the need for monitoring of compliance (NHS England)

• Cancer Reform Strategy, Achieving local implementation – second annual report (DH, 2009) identified the following winning principles that should be applied in the care of cancer patients:

o Winning Principle 1 – Unscheduled (emergency) patients should be assessed prior to the decision to admit. Emergency admission should be the exception, not the norm

o Winning Principle 4 – Patients and carers need to know about their condition and symptoms to encourage self-‐management and to know who to contact when needed

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• Patients have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality (The NHS Constitution for England, 2014)

The tool that has been developed meets good communication recommendations, ensuring that contact assessment and action taken is recorded in a standard format, using an agreed process with a common language. The developed pathway ensures that the treating team is made aware of the parent/carer contact and can see clearly what occurred, thereby meeting all elements of the SBAR protocol.

2.0 Aims and objectives

The aim of the Triage Tool Kit is to provide guidelines that can be adopted as a standard and will: 1. Improve patient safety and care by ensuring that they receive a robust, reliable assessment

every time they or their carers contact a helpline for advice 2. Ensure assessments are of a consistent quality and that advice is determined based on the

use of an evidence based assessment tool 3. Provide management and advice appropriate to the patient’s level of risk. To ensure that

those patients who require urgent assessment in an acute area are identified and that appropriate action is taken, but also to identify and reassure those patients who are at lower risk and may be safely managed by the primary care team or a planned clinical review and avoid unnecessary attendance

4. Form the basis of triage training and competency assessment for practitioners 5. Help to maintain accurate records of the assessment and decision-‐making process in order

to monitor quality, safety and activity

The Tool Kit has been developed for use by all members of staff who may be required to man 24-‐hour advice lines for CYP patients who:



• May be suffering from disease/treatment related immunosuppression (i.e. acute leukaemia, corticosteroids)

Teenagers and Young Adults (TYA) with cancer should be cared for in a dedicated TYA unit, which may be part of a service for children, or for adults. Where they are treated in a children’s service, this triage tool should be used. Where they are managed within an adult service, the corresponding adult tool should be used.

For the purpose of the Tool Kit, both oncology and haemato-‐oncology services are considered as one service and referred to as oncology.

This Tool Kit provides:

• Guidance and support to the practitioner at all stages of the triage and assessment process

• A simple but reliable assessment process

• Safe and understandable advice for the practitioner and the caller

• High quality communication and record keeping


• Competency-‐based training

• An audit tool This tool does not address patient management post admission, nor does it contain admission pathways. It does, however, give the right of admission for assessment to the practitioner manning the helpline.

The level of oncology/chemotherapy knowledge and training required to manage a 24-‐hour advice line is variable nationally, and many practitioners feel unsure and ill equipped to make advanced care decisions. This Tool Kit is also an educational tool and includes a competency assessment framework that all disciplines of staff would need to complete prior to undertaking advice line triage.

3.0 Quality and safety

Males (2007) produced guidelines for the provision of telephone advice in primary care and stressed the importance of risk management/mitigation and clinical governance in the provision of safe and high quality telephone care. Males identified key factors to consider when developing such a service:

• Training

• Triage

• Documentation

• Appropriateness and safety

• Confidentiality

• Communication On review, the Tool Kit was found to address all of the key issues above. If correctly used, the tool will contribute to the governance process, providing an accurate record of triage and assessment. Regular review of triage records is recommended for assessment of quality and of practice. Along with quality and safety data, regular audit of the tool provides data regarding:

• Capacity and demand

• Common concerns and problems that CYP present with

The toolkit has been subject to a multi centre pilot, which resulted in an extremely positive evaluation.

4.0 The Tool Kit – content, application and implementation The triage process can be broken down into three steps:



• Appropriate intervention/action The Tool Kit supports and guides the practitioner through each of the three steps leading to the early recognition of potential emergencies and side effects of treatment, and provision of appropriate and consistent advice.

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The Tool Kit consists of:

• The Tool Kit manual with competency assessment

• Alert Card recommendations

• The Triage Pathway Algorithm and Clinical Governance recommendations

• The Triage Log Sheet

• The Assessment Tool based on the WHO/NCRI-‐CTCAE common toxicity criteria with individual guidelines

4.1 Instructions for use

This section of the tool kit manual, sets out the way in which the triage tool itself should be used; who it should be used by; what training they require, and the competency assessment framework that should be used. It also contains the Triage Tool and the Log Sheet, which should be used to carry out the assessment, and to document the outcome of that assessment.

It is clinically focused and covers the triage and assessment process in detail and the clinical governance pathway:

1. Initial contact and data collection 2. Triage assessment and decision making 3. Giving interim clinical advice and information to patients or others who might be with

them regarding further action, treatment and care 4. Referring a patient for further assessment

It is applicable to communication via the telephone with an individual in a variety of locations or talking face to face in a healthcare environment.

4.2 The Alert Card

The group supports the recommendations of National Chemotherapy Advisory Group(2008) and the Children’s Chemotherapy Peer Review Measures (2014) that each CYP and/or carer must be provided with information about when they may need to contact the advice line for help and clear contact details. The group suggests that a card containing key information about the treatment they are receiving and the advice line contact details should be provided for each CYP/carer. These cards act as an aide memoir for the CYP and carer and as an alert for other healthcare teams that may be involved in the patient’s care. Such cards are now widely used in the adult setting in the UK.

The card contains:

• Patient identification details

• Regimen details

• Information about symptom recognition/warning signs

• Emergency contact numbers

• Information about treatment delivery area


CYP services may consider collaborating to produce a standard Alert Card and provide national education regarding its significance (appendix 1. p.27).

4.3 The Triage Pathway Algorithm and Clinical Governance

Written protocols and agreed standards can be useful to describe and standardise the process of data collection, planning, intervention and evaluation. They can also help reduce risk of liability (Males 2007).

The group has developed a process map that details each step of the pathway and describes the role and responsibilities of the advice line practitioner, which should be agreed and approved locally. Advice line providers should have agreed assessment, communication and admission pathways. Assessment areas and routes of entry should be clearly defined.

There should be a clearly identified advice line practitioner for each span of duty. The process should allow for allocation of responsibility to a nominated triage nurse/doctor for a period of duty. On completion of this period the responsibility for advice line/triage management and follow up of patients is clearly passed to the next member of suitably qualified staff. This should provide a consistent, high quality service. The Tool Kit is a guideline and should be approved for use in each service provider by the appropriate organizational governance group prior to implementation. The governance responsibility for the provision of the advice line service and the use of the triage guidelines to support the service rests wholly with the service provider.

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Parent /carer contacts advice line

Call directed to trained triage practitioner

Data collected and recorded on the triage log sheet

All toxicities/problems assessed and graded according to the assessment tool guidelines.

The toxicity scoring the highest grading takes priority.

Advice and action should be according to the assessment tool, this should be recorded on the triage log sheet

Toxicity may be managed at home. Instructions for care given to carer, and asked to call back if

the situation changes.

1 Amber only-‐requires follow up/review within 24 hours. 2 or more ambers =

RED

Red toxicity or problem requires URGENT assessment. Inform assessment team

providing as much information as possible.

Follow agreed admission pathway

If the patient is admitted following assessment inform oncology team as soon as possible

Triage log sheet completed with a record of the action taken and a copy placed in the patient record. Patients’ consultant should be informed of the patient’s attendance and/or admission

Within 24 hours the completed triage log sheets should be reviewed, patients followed up and a record of the triage assessment and action taken should be entered on to a database


4.4 The Triage Assessment Process and Tool

The triage practitioner’s assessment of the presenting symptoms is key to the process.

4.4.1 Key points Dedicated time in a suitable area for the consultation will enable the clinician to pay appropriate attention to the caller, without being interrupted. The practitioner needs to be aware of the caller’s ability to communicate the current situation accurately, and should use appropriate questioning and prompts until all necessary information has been gathered. They should ensure that the parent/carer understands the questions asked and instructions provided, and that they should feel free to ask questions, clarifying information as required. The triage practitioner should assess if telephone management is appropriate in the present situation. If the patient’s presenting problem is an acute emergency, such as collapse, airway compromise, haemorrhage or severe chest pain, then the following action should be taken:

• The assessment process should be shortened, contact details and essential information collected

• Emergency services should be contacted and immediate care facilitated

If there is any doubt about the parent or carers ability to provide information accurately or understand questions or instructions provided then a face-‐to-‐face consultation should be arranged.

The triage practitioner should consider the data collected along with the parent/carer level of concern in order to perform a clinical assessment and decide on the appropriate action to initiate.

The toxicity assessment triage tool is used as a guideline, highlighting the questions to ask and leading the practitioner through the decision-‐making process. This leads to appropriate action by giving structure, consistency and reassurance to the practitioner.

If, in the triage practitioner’s clinical judgment the guideline is not appropriate to that individual situation, for example previous knowledge about the CYPs personal circumstances or disease that would either encourage the call manager to expedite face-‐to-‐face assessment, or conversely leave the child at home despite the recommendation in the Tool Kit, then the rationale for that decision should be clearly documented. There are advice line calls/queries that will not be addressed by the assessment tool for example: a medication query or nasogastric tube misplaced. Advice in these circumstances should be given according to local policy.

A log sheet should be completed in these circumstances so that there is a record of the call and of the advice given.

56

4.4.2 Risk assessment

The triage tool is based on the WHO/NCRI-‐CTCAE common toxicity criteria.

It is a risk assessment tool used to grade the patient’s symptoms and establish the level of risk the patient is currently under, and will enable practitioners to provide a consistent standard of advice. It is a cautious tool and will advise assessment at a point that will allow early intervention for those at risk.

The presenting symptoms have been red, amber, green (RAG) rated according to the grade and significance. The tool not only recognises high-‐grade symptoms such as pyrexia, but also recognises that a significant number of CYPs and carers who contact triage advice lines may not report a single overwhelming problem, but will have a number of low grade problems. The cumulative significance of these problems was demonstrated during the pilot with 67% of those asked to attend requiring either intervention or admission.

Action selection is based upon the triage practitioner’s grading of the presenting symptoms/toxicity following interview, data collection and triage:

• Red – any toxicity graded here takes priority and action should follow immediately. Patient should be advised to attend for urgent assessment as soon as possible

• Amber – if a patient has two or more toxicities graded amber they should be escalated to red action and advised to attend for urgent assessment

• Amber – one toxicity in the amber area should be followed up within 24 hours and the caller should be instructed to call back if they continue to have concerns or their condition deteriorates

• Green – callers should be instructed to call back if they continue to have concerns or their condition deteriorates

If a CYP is required to attend for assessment then transport should be arranged for them if indicated either due to a deteriorating or potentially dangerous condition or lack of personal transport. If the CYP is deemed safe to remain at home then the parent/carer should receive sufficient information to allow them to manage the situation and understand when further advice needs to be sought (Males 2007). 4.4.3 The assessment process step by step Step one-‐ Perform a rapid initial assessment of the situation: “is this an emergency?” do you need to contact the emergency services

Do you have any doubt about the parent/carers ability to provide information accurately or understand questions or instructions provided if so then a face-‐to-‐face consultation should be arranged.

Record Name and current contact details in case the call is interrupted and you need to get back to the caller.

Step two-‐ what is the parent/carers initial concern, why are they calling?

You should assess and grade this problem first, ensuring that you record this on the log sheet. If this score is RED then you may decide to stop at this point and proceed to organising urgent face-‐to-‐face assessment.


If the patient is stable you may decide to complete the assessment process in order to gather further information for the face-‐to-‐face assessment.

Step three-‐ if the parent/carers initial concern scores amber, record this on the log sheet and proceed with further assessment.

Move methodically down the triage assessment tool, asking appropriate questions. e.g. do you have any nausea? If NO tick the green box on the log sheet and move on.

If YES use the questions provided to help you grade the problem and note either amber or red and initiate action (tick the log sheet). If the CYPs symptoms score red or another amber at any time they should be asked to attend for assessment Step four – look back at your log sheet: -‐

• Have you fully completed the assessment? • Have you arranged assessment for all patients who have scored RED? • Have you arranged assessment for all patients who have scored more than one AMBER? • Have you fully assessed all the patients who have one AMBER, is there a tick in all the other

green boxes of the log sheet? • Have you fully assessed all the patients who have one GREEN, is there a tick in all the other

green boxes of the log sheet? • Have you recorded the action taken and advice given? • Have you documented any decision you have taken or advice you have given that falls

outside this guideline, and recorded the rationale for your actions?

60

5.0 The Triage Log Sheet

It is vitally important that the data collection process is methodical and thorough in order for it to be useful and provide an accurate record of the triage assessment. A standardised format for recording telephone consultations will support the triage process in the following ways: -‐


• A communication tool that will relay an accurate picture of the problem, and action taken at the time of assessment, to the other members of the healthcare team

• A record of the process for quality, safety and governance purposes We recommend that all advice line practitioners record verbatim what the parent /carer calls for (Males 2007). This information may be important if the call should require review at any time. Assessment and advice can only be based on the information provided at the time of interview and an accurate record of what the practitioner was told and what they asked is vital.

A log sheet should be completed for all calls and unscheduled patient visits. This provides an accurate record of triage and decision-‐making and will support audit of the helpline service.

The data collected should be:

• Complete

• Accurate

• Legible

• Concise

• Useful

• Traceable

• Auditable There should be a robust local system of record keeping, with log sheets available for audit purposes.


24-Hour Triage Rapid Assessment and Access Tool Kit for Children and Young People-log sheet

Hospital name and department:

Patient details Patient history Enquiry details Name:…………………………………… NHS Number…………………………… Hospital Number…………………… DoB……………… Age ……………… Telephone Number……………………..

Diagnosis……………………………… Male Female Consultant team…………………………

Date………………Time……………. Who is calling? ……………………………………… Current contact no……………… Call Drop in

Reason for the call: (in the callers own words) What treatment is the patient receiving? Chemotherapy (including oral maintenance) Radiotherapy Post BMT or Stem Cell Rescue Surgery Supportive None State Regimen ………………………………………… When did the patient last receive treatment?……………………… What is the patients’ temperature? …………0c (please note that hypothermia is a significant indicator of sepsis) Last full blood count? Date…………….. Result……………………………………………………………………………… Does the patients have a central line? Yes No Advise Follow up/Review Assess Please document significant medical history/medication: Remember two or more amber = RED

Fever Action taken: Discussed with: Oncologist/Haematologist Yes ¨ No ¨ N/A ¨ AO

Activity Pain Infection Bleeding and/or Bruising Action taken:

Dyspnoea/Shortness of Breath Rash

Nausea,eating and drinking Vomiting Mucositis Diarrhoea Constipation Neurosensory/Motor Extravasation Infectious disease contact Other Please state Bleeding Pain Bruising Other (Please State)

Triage practitioner details:

Signature:……………………………………………………………………Print name………………………………………………………… Designation……………………………………………………………. Date………………………………………………….

Follow up action taken

Signature:……………………………………………………………………Print name………………………………………………………… Designation……………………………………………………………. Date………………………………………………….

62

6.0 Training and competency

It is vital when introducing any defined process such as this that the team involved receives training and support and is assessed as proficient prior to participating (Males 2007). The Tool Kit Manual should be read in detail at the start of training, followed by a process of formal classroom based training with scenario practice, and then observed clinical practice and competency assessment. This approach was used in the pilot process.

The manual contains a competency assessment document linked to the national key skills framework that should be completed for all those who man the advice line and undertake triage and assessment. It is recommended that this assessment be repeated regularly to ensure that competence is maintained; assessment could be linked to the chemotherapy annual competency assessment.

The set of training slides used during the pilot are available at http://www.cclg.org.uk. and can be adapted to include local detail, such as advice line numbers and service leads. The training slides cover the following key points of the process:

• Development of the tool and rationale for use

• The triage process, pathway and decision making

• Clinical governance and professional responsibility

• The importance of accurate documentation, data recording and audit

• Telephone consultation skills, including active listening and detailed history taking

It is important that the wider healthcare team is made fully aware of the plan and implementation of the triage process and the strict requirements for specific training and competency assessment before providing this service. It should be made clear that if they have not received training and competency assessment they should NOT be providing telephone healthcare advice and should refer these calls to a trained member of staff.

6.1 Target users and competency

All staff working within CYP oncology services and who are expected to manage advice lines should be appropriately trained as follows:

• Successfully complete the 24-‐hour triage training and competency assessment • Nurses should have achieved a minimum of foundation competencies as recommended

within the CYP Improving Outcomes Guidance (IOG) N.B. CYP medical staff should be made aware of the triage tool and, if expected to provide advice by telephone, should achieve triage competencies.


6.2. The Competency assessment.

All staff expected to manage 24-‐hour triage advice lines should undertake this assessment.

6.2.1.Summary

This workforce competency covers the assessment of patients who:



• May be suffering from disease/treatment related immunosuppression (e.g. acute leukaemia, corticosteroids)

It is clinically focused and covers:

• Referring a patient for further assessment • Giving interim clinical advice and information to CYP, parents/carers or others who might

be with them regarding further action, treatment and care. • It may involve talking via the telephone to an individual in a variety of locations or talking

face to face in a healthcare environment.

The aim of the communication process is to assess the patient’s condition and:

• Identify patients who require urgent/rapid clinical review • Give advice to limit deterioration until appropriate treatment is available • Provide homecare advice and support

Advice and information will usually be given to a parent or carer, unless the caller is an older teenager, in which case it may be given directly to the patient if they are of sufficient age to both understand, and to act on it.

Users of this competence will need to ensure that practice reflects up to date information and policies.

6.2.2. Conduct and responsibility

This workforce competence has indicative links with the following dimensions within the NHS Knowledge and Skills Framework (October 2004);

• Core dimension 1: Communication • Core dimension 5: Quality • HWB6 -‐ Assessment and treatment planning • HWB7 -‐Interventions and treatments

and Nursing and Midwifery Council Code of Conduct ( 2015) further detail can be found at appendix 2 p. 28.

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6.2.3. Maintaining Triage competency:

• Named assessors will assess triage practitioners on a 12 monthly basis. • Assessment will include observed practice, scenario assessment and discussion. • Assessment sheet will be signed by a nominated assessor and also by practitioner to

confirm competence.

6.2.4. Scope of the competency assessment

This section provides guidance on required areas to be covered in this framework. Areas covered:

• Giving clinical advice which will include: • Managing emergency situations • Monitoring for and reporting apparent changes in the individual’s condition • Calming and reassuring the individual or their parent/carer

• The importance of identifying the capacity of the parent/carer, or young person where applicable to take forward advice, treatment or care

• The importance of ensuring the caller contacts the helpline again if condition worsens or persists

• The importance of completing the assessment pathway and ensuring that decisions are documented and reviewed.

• The importance of documenting any decisions taken or advice given which falls outside this guideline and recording the rationale for the advice given and action taken


6.2.5. Competency assessment record Following completion of training and assessment process the assessor and the practitioner must agree on and confirm competency. Practitioner name.......................................... Practitioner Signature.................................. Assessor name............................................. Assessor Signature........................................... Date.............................................................. Organisation........................................................ This is to deem that ........................................................................... has been assessed as competent in the use and application of the “24 Hour Rapid Assessment and Access Tool kit”

1. Knowledge and Understanding: You need to be able to explain your understanding of the following to your assessor:

To be signed and dated by the student and assessor to confirm competency Date Signature

1a Your own role and its scope, responsibilities and accountability in relation to the provision of clinical advice.

1b The types of information that need to be gathered and

passed on and why each is necessary.

1c How communication styles may be modified to ensure it is

appropriate to the individual and their level of understanding, culture and background, preferred ways of communicating and needs.

1d

Barriers to communication and responses needed to manage them in a constructive manner.

1e The application of the triage tool kit guidelines available for

use as tools for decision making in relation to different types of request and symptoms, illnesses, conditions and injuries.

1f

The importance of recording all information obtained in relation to requests for assistance, treatment, care or other services on the tool kit log sheet.

1g The process to be followed in directing requests for onward action to different care pathways and related organisations.

1h Why it is important that you advise the individual making

the request of the course of action you will take and what will happen next.

66

1i The circumstances in which a request for assistance, treatment, care or other services may be inappropriate/beyond your remit and the actions you should take to inform the person making the request of alternatives open to them.

2. Performance Criteria: You need to demonstrate that you can:

2a

Explain to the individual what your role is and the process you will go through in order to direct their request.

2b Select and apply the Tool Kit triage process appropriate to

the individual, and the context and circumstances in which the request is being made.

2c Adhere to the sequence of questions within the protocols

and guidelines. Phrase questions in line with the requirements of the protocols and guidelines, adjusting your phrasing within permitted limits to enable the individual to understand and answer you better.

2d Demonstrate competent use of the assessment tool and completion of the tool kit log sheet.

2e Explain clearly:

• Any clinical advice to be followed and its intended outcome

• Anything they should be monitoring and how to react to any changes

• Any expected side effects of the advice • Any actions to be taken if these occur

2f Clarify and confirm that the individual understands the advice being given and has the capacity to follow required actions

2g Provide information that:

• Is current best practice

• Can be safely put into practice by people who have no clinical knowledge or experience

• Acknowledges the complexity of any decisions that the individual has to make

• Is in accordance with patient consent and rights

2h Communicate with the individual, in a manner that is appropriate to their level of understanding, culture and background, preferred ways of communicating and which meets their needs. The ability to communicate in a caring


and compassionate manner. 2i Communicate with the individual in a manner that is mindful

of:

• How well they know the patient

• The accuracy and detail that they can give you regarding the situation and the patient’s medical history, medication etc.

• Patient confidentiality, rights and consent

2j Manage any obstacles to effective communication and check that your advice has been understood.

2k Provide reassurance and support to the individual or third

party who will be implementing your advice, pending further assistance.

2l Ensure that you are kept up to date regarding the patient’s condition so that you can modify the advice you give if required.

2m Ensure that full details of the situation and the actions already taken are provided to the person or team who take over the responsibility for the patient’s care.

2n Recognise the boundary of your role and responsibility and the situations that are beyond your competence and authority.

2o Seek advice and support from an appropriate source when the needs of the patient and the complexity of the case are beyond your competence and capability.

2p Ensure you have sufficient time to complete the assessment.

2q Provide information on how to obtain help at any time.

2r Record any modifications, which are made to the agreed assessment process and documentation and the reasons for the variance.

2s Record and report your findings, recommendations, patient

and/or carers response and issues to be addressed according to local guidelines.

2t Inform the patient’s medical team on the outcome of the

assessment as per the assessment pathway.

68

References Courson.S. (2005) What is Telephone Nurse Triage. Connections Magazine.

https://vatlc.wordpress.com/2010/11/26/what-‐is-‐telephone-‐nurse-‐triage/ (Last accessed 12th May 2015) Department of Health (2009), Cancer reform strategy: achieving local implementation -‐ second annual report

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_109339.pdf (Last accessed 12th May 2015)

Department of Health (2014), The NHS Constitution for England https://www.gov.uk/government/publications/the-‐nhs-‐constitution-‐for-‐england (Last accessed 12th May 2015)

Department of Health (2006) The acutely or critically sick or injured child in the District General Hospital: A team response

Johnson, M., Yarbro, C.H. (2000) ‘Principles of Oncology Nursing’, in Holland, J., Frei, E., Bast, R., Kufe, D., Morton, D., Weichselbaum, R. (Eds), Cancer Medicine (4th ed), Baltimore: Williams and Wilkins.

Males T, (2007) Telephone consultations in primary care: a practical guide. RCGP 2007. ISBN: 978-‐0-‐85084-‐306-‐4.

National Institute for Health and Clinical Excellence (2005) Guidance on Cancer Services

Improving Outcomes in Children and Young People with Cancer. https://www.nice.org.uk/guidance/csgcyp/evidence/improving-‐outcomes-‐in-‐children-‐and-‐young-‐people-‐with-‐cancer-‐manual-‐update-‐2 (last accessed 4th April 2015). NCAG (2009), Chemotherapy Services in England: Ensuring quality and safety http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_104500 (last accessed 4th April 2015). NHS England: National Peer Review Programme. The Manual for Cancer Services, Children's Cancer Measures (Version 1.1. July 2014). NHS England (2013/14) NHS standard contract for NHS standard service specification template for cancer: chemotherapy (children, teenagers and young adults) B15/S/b. http://www.england.nhs.uk/wp-‐content/uploads/2013/06/b15-‐cancr-‐chemoth-‐child-‐teen-‐yng-‐adul.pdf (last accessed 4th April 2015).

NHS knowledge and skills framework (2015) http://www.nhsemployers.org/SimplifiedKSF (last accessed 10.08.2015)

Nursing and Midwifery Council (2015) The Code: Professional standards of practice and behaviour for nurses and midwives. http://www.nmc.org.uk/globalassets/sitedocuments/nmc-‐publications/revised-‐new-‐nmc-‐code.pdf (last accessed 10.08.2015)

Sujan,M, Chessum,P, Rudd, M, Fitton,L, Inada-‐Kim,M , Spurgeon,P, Cooke M (2013) Original article. Emergency Care Handover (ECHO study) across care boundaries: the need for joint


decision making and consideration of psychosocial history: Emerg Med J 2015;32:112-‐118 doi:10.1136/emermed-‐2013-‐202977.

The NHS Litigation Authority Risk Management Standards 2013-‐14, www.nhsla.com/ (last accessed 11th March 2016).

Towle.E, (2009) Telephone Triage in Today’s Oncology Practice, Journal of Oncology. http://jop.ascopubs.org/content/5/2/61.full (last accessed 4th April 2015).

UKONS (2010) Oncology Haematology 24 Hour Helpline, Rapid Assessment and Access Tool Kit. http://connect.qualityincare.org/__data/assets/pdf_file/0004/467347/eval_ver_6a2.pdf (last accessed 4th April 2015).

WHO Collaborating Centre for Patient Safety Solutions (2007) Communication During Patient Hand-‐Overs; Patient Safety Solutions, volume 1, solution 3. http://www.who.int/patientsafety/solutions/patientsafety/PS-‐Solution3.pdf (last accessed 4th April 2015).

70

Development group:-‐

The development group would like to acknowledge the support of CLICSargent in the printing and production of this manual.

Philippa Jones Macmillan Associate Acute Oncology Nurse Advisor

UKONS/Macmillan

Rose Gallagher RCN Professional Lead for Infection and Prevention Control

RCN

Lorraine Turner Nurse Consultant RCN/The Christie Hospital

Helen Morris Matron-‐Paediatric Haematology/Oncology/Bone Marrow transplant

University Hospitals Bristol NHS Foundation Trust

Ruth Whitlock Paediatric Haematology/Oncology Educational Lead

Cambridge University Hospitals NHS Foundation Trust

Carol Chennery Inpatient Senior Sister Cambridge University Hospitals NHS Foundation Trust

Wendy King Macmillan Paediatric Oncology Consultant Nurse

Whittington Health

Barbara Doyle Lead Cancer Nurse Sheffield Children’s NHS Foundation Trust

Jenny Palmer Lead Nurse, Children’s Cancer Services The Newcastle Upon Tyne Hospitals NHS Foundation Trust


Appendix 1. Alert Card Example

72

Appendix 2. Please see below indicative links with the following dimensions within the NHS Knowledge and Skills Framework (October 2004);

• Core dimension 1: Communication • Core dimension 5: Quality • HWB6 -‐ Assessment and treatment planning • HWB7 -‐Interventions and treatments

and Nursing and Midwifery Council Code of Conduct ( 2015).

Core dimension 1: Communication

Level 3: Develop and maintain communication with people about difficult matters and/or in difficult situations.

Core dimension 5: Quality

Level 2: Maintain quality in own work and encourage others to do so

HWB6 Assessment and treatment planning: Assess physiological and/or psychological functioning when there are complex and/or undifferentiated abnormalities, diseases and disorders and develop, monitor and review related treatment plans

HWB7

Interventions and treatments: Plan, deliver and evaluate interventions and/or treatments when there are complex issues and/or serious illness

The Nursing and Midwifery Council (NMC) Code of Conduct

The practitioner is reminded that they are accountable for practice as detailed in the NMC code of conduct (2015).

The code details the following guidelines for practise that are relevant to the advice line practitioner:

Ensure that you assess need and deliver or advise on treatment, or give help (including preventative or rehabilitative care) without too much delay and to the best of your abilities, on the basis of the best evidence available and best practice. You communicate effectively, keeping clear and accurate records and sharing skills, knowledge and experience where appropriate. You reflect and act on any feedback you receive to improve your practice.

Always practise in line with the best available evidence


• Make sure that any information or advice given is evidence-‐ based, including information relating to using any healthcare products or services,

• Maintain the knowledge and skills you need for safe and effective practice.

Communicate clearly

• Use terms that people in your care, colleagues and the public can understand • Take reasonable steps to meet people’s language and communication needs, providing,

wherever possible, assistance to those who need help to communicate their own or other people’s needs

• Use a range of verbal and non-‐verbal communication methods, and consider cultural sensitivities, to better understand and respond to people’s personal and health needs

• Check people’s understanding from time to time to keep misunderstanding or mistakes to a minimum, and

Work cooperatively

• Respect the skills, expertise and contributions of your colleagues, referring matters to them when appropriate

• Maintain effective communication with colleagues • Keep colleagues informed when you are sharing the care of individuals with other

healthcare professionals and staff • Work with colleagues to evaluate the quality of your work and that of the team • Work with colleagues to preserve the safety of those receiving care • Share information to identify and reduce risk.

Keep clear and accurate records relevant to your practice

This includes but is not limited to patient records. It includes all records that are relevant to your scope of practice.

• Complete all records at the time or as soon as possible after an event, recording if the notes are written some time after the event

• Identify any risks or problems that have arisen and the steps taken to deal with them, so that colleagues who use the records have all the information they need

• Complete all records accurately and without any falsification, taking immediate and appropriate action if you become aware that someone has not kept to these requirements

• Attribute any entries you make in any paper or electronic records to yourself, making sure they are clearly written, dated and timed, and do not include unnecessary abbreviations, jargon or speculation

Ensure that you make sure that patient and public safety is protected. You work within the limits of your competence, exercising your professional ‘duty of candour’ and raising concerns immediately whenever you come across situations that put patients or public safety at risk. You take necessary action to deal with any concerns where appropriate.

74

Recognise and work within the limits of your competence

• Accurately assess signs of normal or worsening physical and mental health in the person receiving care

• Make a timely and appropriate referral to another practitioner when it is in the best interests of the individual needing any action, care or treatment

• Ask for help from a suitably qualified and experienced healthcare professional to carry out any action or procedure that is beyond the limits of your competence

• Complete the necessary training before carrying out a new role.

Always offer help if an emergency arises in your practice setting or anywhere else

• Arrange, wherever possible, for emergency care to be accessed and provided promptly.

Advise on, prescribe, supply, dispense or administer medicines within the limits of your training and competence, the law, our guidance and other relevant policies, guidance and regulations

• Prescribe, advise on, or provide medicines or treatment, including repeat prescriptions (only if you are suitably qualified) if you have enough knowledge of that person’s health and are satisfied that the medicines or treatment serve that person’s health needs

• Make sure that the care or treatment you advise on, prescribe, supply, dispense or administer for each person is compatible with any other care or treatment they are receiving, including (where possible) over-‐the-‐counter medicines.


Appendix 2: Pilot Site Agreement

Paediatric Oncology/Haematology

24 Hour TRIAGE

Rapid Assessment and Access Tool kit

Thank you for agreeing to take part in the UKONS and RCN pilot of the Paediatric Oncology/Haematology Tool kit. We are delighted to confirm that you can now begin the pilot phase. Please find your pilot site details below: Pilot number: Pilot lead: Name of Trust:

Pilot Process

1. Training All staff using the Tool Kit must have received the appropriate training and have been assessed as competent. Project leads will have been assessed at a training day and will have cascaded the training to their trust teams. A competency framework has been supplied; please ensure that all appropriate staff prior to using the Tool Kit have completed this.

2. Evaluation Evaluation will be a two step process: an evaluation questionnaire to be completed by helpline practitioners, and a review of a random sample of anonamised log sheets. Questionnaire We would like all staff who use the Tool Kit to complete the evaluation questionnaire. The pilot lead should collate the completed questionnaires and send them to us at the end of the pilot. A paper copy of the evaluation questionnaire will be contained within your pack.

76

Log Sheets Log Sheets should be anonamised and photocopied prior to posting. Please make sure that each form contains the following details: 1. Pilot site 2. The professional discipline and grade of the staff member who completed the form There is an example in your pack. When you have completed your trial period please post the copied forms to the address below by recorded delivery. Please inform Natalie Bostock ([email protected]) advising that you have forwarded the documents and completed your pilot. Mail Address: Natalie Bostock, Nursing Coordinator Nursing Department Royal College of Nursing Room 203, 20 Cavendish Square London W1G 0RN 02076473758 [email protected] The development team will review the evaluation sheets and a random selection of the log sheets to produce a report that will be available to the pilot sites. 3. Pilot Period The pilot will run for a two month period or completion of 100 log sheets. Please inform Natalie Bostock ([email protected]) when you have commenced the pilot. If for any reason you are not able to complete the pilot and wish to be withdrawn please do inform us as soon as possible. It would be very useful if you could also let us know why this has happened. We request that you do not photocopy or share the Tool Kit with any other paediatric units during the pilot period. We are hoping to distribute widely following review and evaluation.


Appendix 3: Diagnosis

1 9

1 4

1 1 1 1 3 3 1 2 1 1 1 2 1

14 1 3 3 2 1 1

11 3 1 1 1

7 3 7

2 1 1 1 2 7

2 2

9 3 1 1 1 1 1 3 1 1 4 2 4 2 5

1 1 1 1

9 104

7

0 20 40 60 80 100 120

Wiskott-‐Aldrich Syndrome Wilms Tumour

Von-‐Willebrands disease & Ehlers-‐Danlos syndrome. Vaginal Rhabdomyosarcoma

Thalossemia Spinal cord tumour

Sickle Cell, Lupus, Kidney Sickle Cell

Rhabdomyosarcoma Retinoblastoma

Relapse Red cell aplasia

R Ewings Previous BMT patient Previous BMF patient

Posterior fossa ependymoma Post HSCT Post BMT

PNET Pineoblastoma

Pilocytic Astrocytoma Philidelphia and PHL post Bone Marrow Transplant

Philadelphia ALL Pancytopenia, platelet transfusions, ? Diagnosis

Osteosarcoma Optic Pathway Glyoma

NRBL Non Hodgkin Lymphoma

Newly diagnosed Lymphoma Neuroblastoma

Medulloblastoma Lymphoma

Low Grade Glioma Liver Tumour

LGH (Low Risk) relapsed June 2013 LGG

Leukaemia LCH ITP

HR Neuroblastoma Hodgkins Lymphoma HLH Post transplant

HLH Histiocytosis

High Risk Neuroblastoma Hepatioblastoma

Haemophilia -‐ a high titre Glioma

G6PD Deviciency Fanconi anaemia Ewing Sarcoma Ependymoma

Di George Syndrome Burkitt's Lymphoma

Brain Tumour BCCU Lymphoma

B Leukaemia Astrocytoma

Anaplastic Pilocytic Astrocytoma AML ALL

not recorded

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Appendix 4: Reasons for calling

Temperature related

1

Patient has had low temperatures recorded today – under 35, 34.8 then 35.1, also shivering. Been at school and ok in himself but on questioning had temperature/hot yesterday – over 38 for a couple of hours and sticky eyes

2 Temperature 38.4. Been niggling most of the day

3 Temp 38.3

4 Patient has a temperature of 38.8 – feet and hands warm

5 Dad phoned, as he obviously feels a bit shitty. Temp 37.6

6 A little warm at 38.6

7 Burning up. Temperature is 39

8 Temperature 39.2, unsure for how long as school called mum to inform them

9 Patient is hot 38c, given paracetamol this am as not right. Hot this pm and tired.

10 Patient has a temperature of 38.8 c

11 Discharged Tuesday. PODU for Vin on Friday. Generally well but 2 x temp (38.3) today. Dad reports that patient is tired and has a decreased appetite

12 Patient's temperature is 38.4. Has had calpol at home

13 Patient has had a sleep today and woken up with a temperature of 38c

14 Has temperature of 38.1

15 Temperature of 38 (first temperature). Well in self. Family have cold

16 Temp above 38. More lethargic, has sore throat

17 Patient has had 2 x temperatures of 38.4 and 38.6 at home today. He has a portocath and had vincristine? On PODU yesterday. Generally feeling unwell with flu like symptoms including earache

18 Patient was shaking when got home from school, temp was 35 but is now 37.4 and shaking still

19 More tired than usual. Temp is 36.8. Been playing with a friend and is now laid on the settee


20 Patient has a temperature of 38.4

21 Patient's temperature is low, under 35c, several times, checked on two thermometers, a bit more tired than normal

22 Patient has a temperature taken 3 times, 38.7, 38.9, 38.8

23 Patient has a high temperature at home -‐ 39.3 four hours after Ibroprofen. Has been off his food today and not drinking as much. He has not been as active as usual today

24 Generally well in herself, slight cough. Mum noticed patient was mottled when putting her in the bath. Checked her temp which was 38.3

25 Headache/temp 38.7 at 8.30 pm. 38.4 when taken again 1 hour later

26 Patient has a temperature of 38.3. Dad requesting to come to C2 as patient is mid chemo on PDU.

27 Last few days patient has been retching, off school and this morning is jittery. Temp: 38.1 and 38.5

28 Fever of 38.8 and stomach pains

29 High temperature, otherwise well. Other children unwell

30 Has temperature of 38c

31 Patient's temperature is 38.3 and neutrophil count of 0.2

32 Temperature 37.8. Went home earlier today. Can he come for oral antibiotics/

33 Patient’s dad called. Patient is febrile. 38.1 and feels sick

34 Discharged home from Lister 11am today following 8/7 admission for febrile + ? GI. Now 38c temp. Dad requesting to come to C2

35 Temp 38.4 & 38.8

36 Patient has a temperature of 38.2c

37 Temp 39 and vomited

38 Patient has temperature, not eating

39 Chemo Carbo/Vinc now temp 38.3

40 Patient has a temperature

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41 Temp 38.8

42 Temperature 38.3

43 Cough since yesterday morning (12:00) and overnight. Temperature has been going up

44 Patient has a temperature

45 Spiked temperature of 38.3. On recheck it was 38. Complaining of headache.

46 Patient has been unsettled overnight and has a temperature of 37.7. He is slightly shaky. Normal appetite. Whilst on the phone Dad retook temperature -‐ it was 38.2 so advised parents to bring patient in.

47 Feeling sick, temp is 38.3. Cold hands and feet, communicating but shivery

48 Patient has been asleep and has woken up with a temperature of 38.4.

49 Not eating/drinking. Lethargic, low grade temperature

50 Pyrexia 37.8 and sore throat/cough

51 Patient febrile to 39.3 on 18/10/13, went to local. After finger prick bloods and review, sent home on oral antibiotics. Febrile all night at home, had no Calpol. Now 39.6

52 Vomiting, pyrexial, lethargic

53 Not right all day, been asleep. Awoke with temp 38.3. Not eating or drinking much today

54 Temperature of 38.5 for one hour with ear pain

55 Pain ear, temp 38.4, and backache, DF 118, coryzal. Due for portocath removal 13/06/2013

56 37.6, 38,37.9. Tired and quiet, loose stools

57 Feeling unwell -‐ temperature 38.7 at 20:30

58 Patient has got temperature 37.8 as well as sore eyes. Was seen on the ward yesterday

59 Mum rang and informed that patient's temp was 37.5, which is elevated for him. Generally well. She is not concerned at the present

60 Mum says she is going to have to bring patient up to the ward as she has vomited and has a cough. Temp is 37.9> Informed registrar and PNP of phone call


61 Said not feeling well this am. Acting lethargic, temperature 38.4c

62 Spiked a temperature 38.6

63 Temperature 38.8, lethargic

64 Patient's temperature 38.5, mum had been told to come in if temp above 38

65 Patient has a temperature of 38 degrees and re-‐checked after half an hour and is still 38 degrees C. Unsure of what to do

66 'What classes as a low temperature? Patient has had an 35.2, 35.4 and 35.6 so I don't know'

67 Mum rang to report patient has a temperature of 38.5. Well in herself, running around and playing

68 Temperature of 37.9. Patient has been at school, slightly tired now at home. Mum thinks this is because of the weather

69 Patient's Mum telephoned as patient has a temperature of 38 and has vomited x3. Mum reports temperature has been up and down all day

70 Temperature of 39. Mum gave paracetamol. Feels dizzy, vomiting

71 Two temperatures of 38.17 and 38.22 one hour apart at home.

72 Temperature of 38, no movement in right arm, no other limbs affected

73 Patient has a bit of a temp 39.7 -‐ has given calpol. Has been vomiting since going home from the ward today

74 Patient has a high temperature at home. She is really not herself, sleepy and not eating and drinking as normal

Rash

1 When bathing patient noticed rash around tummy. No temperature but worried because patient has recently had surgery

2 Rash, had DLs in ODB 30/08/13

3 Mum said patient appears to have a platelet rash on her abdomen, behind her ears and on her neck. She is otherwise well. Her platelet count was low on Tuesday

4 She's got platelet spots and that wobbly tooth keeps bleeding

5 Rash on legs itchy. Had anti-‐histamine tablet. Now limping c/o pain at top of leg

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(R) between knee and up. Feels like a dead leg

6 Few concerns. Patient's rash worse, red ++ last night and itching despite creams. Has a sore throat white

7 Patient has a rash on his back around shoulder blade. Not itchy or painful. Had blood last Tuesday, platelets adequate

8 Rash at back of knees -‐ purple spots. Has got Ecezema to that area

9 Patient has a few spots on his face? Heat rash

10 Pin prick rash lower calf, afebrile and well in self

11 Rash on legs, previously there but now itchy

12 Patient has a rash on her tummy and back

13 Patient has come out in a rash today. Mum thinks it might be chicken pox.

14 Patient has had a bad GVH rash for past week. Steroids had been increased to 40mg. Was meant to bring her back on Sunday if rash any worse. Now itching all over. Rash better than yesterday. Rash no worse. Steroid cream applied, itching better

15 Platelet rash on chest/tummy. Otherwise well

16 In on Tuesday, Plts 70, more platelet rash and bruising, HB 8.5

17 Patient had chicken pox (varicella) vaccination 1 week ago and yesterday mum noticed spots/pimples under the skin on back, chest and top of shoulders (just a few)

18 Patient developed a blistered rash on his tummy. Finished treatment in May. Rash painful and spreading. ? Shingles

19 Rash/red spots on patient's tummy. ? Platelet rash. Afebrile, eating and drinking, alert, orientated, no bleeding gums, bowels opened. No rash evident anywhere else, not itchy, no viral symptoms

20 Dad calling for advice -‐ patient had chemo/scan yesterday -‐ spots (12-‐15) under bra strap area. Dad considers it to be a 'sweat rash'

21 Rash on lower legs after playing in grass. Not unwell

22 Patient woken from nap with rash and very itchy. Episode of diarrhoea, rash on body, not arms/legs. Mum concerned. Temp 37.6 (slowly going up)

23 Other daughter has a rash on tummy and groin area. ? Heat rash. Raised red


spots, blanching

24 Platelets 28 Mon, just changed platelet limits. 30 min ago banged knee. Lots of bruises, noted pinprick red dots on knee and in other places

25 Rash over face and arms. Disappears when you touch -‐ otherwise well

Nausea Vomiting

1 Mum reported that patient has been vomiting and even with anti-‐emetics it's not making any difference

2 Feels sick and had s/a of fresh blood in urine today. Not quite herself. Not eating well

3 Vomiting x 4 since 18:00 and screaming with tummy pain

4 Patient is complaining of stomach ache, ear ache, head ache and has vomited 3 times since this morning

5 Vomited blood x 1

6 Keeps on being sick

7 Patient is vomiting -‐ has tolerated water, toast and biscuits, vomited milk (Fortini)

8 Patient has had synacthen test today and missed 2 doses of hydrocortisone. Has got banging headache and has vomited. Can missed dose cause this? Previous week missed dose -‐ vomit and headache, self resolved, dose doubled

9 Vomited after morning dose of Probenisid. Dad asked if he could repeat dose

10 Vomiting/not eating. Pale lips and ears

11 Patient has vomited nose tube out

12 Vomiting NG tube out

13 Would like to speak to a doctor (none on ward at time, therefore I asked why? Could I help?) Son had attended PDU yesterday and had been vomiting after immunoglobulins

14 Feeling sick for one hour and then had a large vomit. Also had stomach pains, which went after vomit

15 Patient has been feeling nauseous and vomiting. Mum feels that she does not look well but she is due to go to a concert and is very keen to go this afternoon

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16 Vomited NG tube out Saturday. Vomited again this morning

17 Patient was vomiting yesterday, not vomited today but is in a lot of pain in stomach. Not eating, shivering but no high temperature

18 Had chemo on Monday. All right until yesterday but started to be sick yesterday. Had sickness medicine

19 Vomiting 3 times in the morning -‐ patient has been vomiting since Monday

20 School have called to say patient has had 1 x vomit and is 'shivery'. Temperature 36.0c

21 Advice for patient re vomiting and would like some reassurance. Patient has come home post chemotherapy but is still vomiting

22 Patient feeling nauseous but not vomited. Can he have metoclopromide or Ondansetron. Had blood transfusion on 08/06/2013. Mum not sure if neutropenic. Currently on oral mercaptourine

23 Patient is feeling dizzy and has a headache. He is also vomiting

24 Not keeping anything down. Vomiting, anti-‐sickness, worried dehydrated. Had chemo beginning of the week

25 Mum rang as patient has vomited once and feels sick with loose stools x 2

Generally unwell

1 Mum reported that patient is looking pale but has no temperature

2 Very pale and been laid on settee since waking up

3 Generally not right, sleepy, feels poorly

4 Mum very upset and crying -‐ patient not drinking or eating or taking medicines. Mum anxious to come in so advised to bring him in

5 Difficulty in breathing -‐ pain management Tachycardia. In ambulance -‐ asked me to speak to ambulance service to explain that patient has open access to the ward. Mum said she was very concerned

6 Patient had a respiratory fistula sewn up yesterday and a flu jab. Temp 37.7 now (18:15 hrs) but looks hotter. Patient is 'shattered'

7 Very tired, cool hands, not hot, no temp, aching legs. Also nauseated (not unusual when on treatment). During call Mum said hands were warming up.

8 Chesty nose/croupy but well in himself. No temp, eating and drinking well


9 Dad called as feels patient needs blood transfusions as tired and lethargic

10 Patient has a Hb of 67, Platelets of 19, Neutrophils of 0.09 but he is on GCSF. Will need to come to the ward

11 Double dose steroids, had chemo on Tuesday. Very sleepy, puffy eyes, doesn't know what he wants, clingy

12 Patient has been out in the sun. Sleepy, just passed urine -‐ dark, has a bit of a wheeze/bark, no temperature

13 Going 4.5 hours between feeds. JCW told family to ring if he was lethargic which he is also

14 His daughter is concerned due to new symptoms, heavy head and pins and needles in her hands

15 Patient well in herself with cold like symptoms. Has had sore dry eyes and heat rash on shoulders and sore passing urine sometimes but that has been reviewed and urine negative. Thumbnail size blister on leg, sore to touch. ?shingles, has had before

16 Grizzly, can they give a dose paracetamol?

17 Temp 37.8, have given oral antibiotics 30 mins later to 37.4. Wants to know if needs a hospital review. Does not seem unwell but not eating as much and a bit more sleepy

18 Not eating/drinking. Lethargic, low grade temperature

19 Patient is starting with a cold. Has runny nose, temperature, highest is 37.8, eating and drinking, up and watching TV, has eaten breakfast

20 Reduced feeds. Not crying for feeds. Breathless

21 Lethargic, dry lips and hot. Sleepy yesterday, well this morning

22 Picked up from school, tired, quiet, Ranitidine given by Mum c/o pain and feeling sick. Had chemo -‐ vinc yesterday

23 Mum had called an ambulance due to patient having a dizzy, unresponsive episode with slurring speech. Paramedics lefts as patient came round and was responsive

24 Quiet all day and has sore throat. Mum feels like she is coming down with a cold.

25 Full of cold. Loss of hearing R ear

26 Patient is still full of cold/flu, temp is normal but she is quite drowsy. However,

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she is alert and orientated although she has a slight pain in legs

27 Pale, tired, still legs, dark under eyes. Spots on face which seen in clinic on Thursday 16/01/2014 and given solution cream (Zinerg). Dad has confirmed Impetigo. Neutropenic on Thursday and had Vincristine on Thursday

28 Sleeping more today, looks pale, off balance 2 + weeks. Due tomorrow to clinic

Pain

1 Patient has a headache -‐ can he have some calpol?

2 Patient has had earache since

3 Earache, hearing down, has a cold. Sleeping more than usual. Patient complaining of both ears hurting. Temp is high at 37.9. Mum has given Paracetamol

4 Patient has stomach pain/cramps following Prednisolone. "I'm going to call an ambulance"

5 Patient has a headache but mild and not interfering with function or activity. Only has paracetamol at home for pain. Alert and afebrile

6 Refusing to eat 3/7. Sore bottom. Drinking.

7 Still runny nose and sore throat, not his normal self. Temp 36.4

8 My daughter is having breathing problems

9 Serious pain in stomach. Started this morning

10 School rang. Pain in top of chest, below throat. Otherwise well and at school. Mum not with patient when carrying out triage

11 Patient has a pain under her ribs on port side. She has pain on breathing in

12 Chest pain between nipple and brovac site, constant ache

13 Patient has severe tummy pain, which is hurting his chest

14 Dad states patient has a painful outer ear and sore throat. Temp 36.9, eating and drinking well

15 Abdominal pain. Presented Tuesday evening 13/01/14 with R sided abdominal pain. Today left and right pain

16 Vincristine dose given yesterday at 5.00pm. Lactulose given at 6.30am -‐ bowels opened however remains in pain and stomach tight


17 Patient had Vincristine on Thursday. He has jaw and leg pain despite paracetamol and brufen being given

18 Unable to control pain at home

19 Leg pain on Sunday. Chemo on Monday. Reviewed on Monday advised to give Ibuprofen as Coedine not worked previously

20 Painful back after LP, pain when sitting up. Recovering BMT, sore bum.

21 Earache, advised by GP

22 Pain in tummy -‐ spreading to liver. Not febrile but showing recurrence of previous infection

23 Central tummy ache. 1 x loose stool. Temp 37.8, rechecked 37.4. Eating tick, drinking tick Alert tick

24 G6PD Deficiency. Stomach pains, pyrexial 41.4, penicillinV, tonsillitis, calpol, still pyrexial after 2 hrs, can't have brufen

25 Leg with nerve pain more swollen than other leg

26 Patient crying with bellyache. Has been on lactulose, bowels open 3 times today. Otherwise very well. Can she give a dose of paracetamol

27 Patient complaining of hip pain. Requiring regular codeine. Went to school this morning and still complaining of pain

28 Woke up c/o tummy pain x1 vomit after night feed and Movicol

29 Patient has slept for 8 hours today and has been complaining of chest pain/shortness of breath. Not right since discharge from M3 01/07/2013

Bowels

1 Mum rang to report that patient had has her second runny poo. Patient is well in herself but has had two episodes of Diarrhoea today

2 Diarrhoea x 2, formed x 1, runny x 1. Runny Diarrhoea at home, went again and passed a formed stool. Temp taken -‐ 36.2. Patient well in himself. Oral 6MP taken.

3 Patient has diarrhoea

4 Patient is a bit constipated -‐ parents enquiring whether to start Movicol

5 On 10/52 of Chemo -‐ just had 4th dose? Constipated. Bowels opened at 06:00am. Has not opened bowels since, usually opens bowels 3-‐4 times a day. Unsettled, tummy tight

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6 Severe stomach pain. Trying to have bowels open, screaming with pain. Dad thinks patient is constipated. Started to shake, going red with screaming and pain

7 Been for a number 2 and now cannot stand properly. Has a sore tummy

8 Doesn't have a temperature but has a stomach-‐ache. Mucousy poos -‐ loose when he opens his tummy hurts x 3 today. Once he has gone no pain. Drinking well, no change in himself

9 Day 15 of radiotherapy, slightly lethargic 2 x mucus from bowels (bottom). Stoma in situ, not happened before. Stoma working -‐ loose dark stools

Injury/Accident

1 Fell down yesterday and bumped her head. Now has a blister on her lip

2 Accident in school -‐ patient tripped and now can't walk

3 Had a fall while strapped in the buggy, slight bleeding to forehead. Bruising on nose and upper lip, bleeding stopped after applying pressure to area

4 Patient has dropped her IPad on her head, it is sore and bruised.

5 Bit nail yesterday and made it bleed. Knocked it today and made it bleed again but has now stopped

6 Accident in school. Football kicked him in the chest. Mum concerned about portocath

7 Patient has fallen and cut her head, not bleeding. Has been brilliant

8 Patient has bumped her ankle and has complained it hurts. Not red, bruised but sore

9 Head injury at school 40 minutes ago after falling. ITP recently diagnosed. Now complaining of feeling dizzy. Mum not seen child. Not knocked out

10 Split ankle open

11 Legs have been funny for a few days. Now fallen off bottom stair

12 Mum contacted ward as patient had been to soft play and a child had fallen onto patient and had bumped her on the head

Mucositis

1 Ulcer cheek. Sore when swallows now. Vincristine Tuesday

2 Patient has got mouth ulcers on gum and palate. Wants to know if she can take


Bonjella and use gel. Dad stressing patient is very well in herself -‐ pain scale 4 but hasn't had any analgesia

3 Had mucositis a week ago and tongue is sore again. Had count recently and was ok.

4 Mum is concerned patient has a temperature of 37.2 (high for him) & mouth ulcer -‐ can she give paracetamol

Central Line Issues

1 Swelling and bleeding around PICC line

2 Bioconnector got soiled in nappy. Bioconnector changed sterile via Mum.

3 Mum rang concerned as patient's central line was "covered in poo". Mum had changed patient's nappy and found the end of the lines were caught in the nappy and covered in poo

4 Patient has come in from school and complained of a sharp pain around exit site

5 Patient not drinking, has sore central line and sore knees

6 Had a reservoir fitted recently and Dad can feel a lump

7 Dad asking for advice about how much ooze/bleed normal post Hickman line insertion

8 Patient has H/L inserted and Mum noticed a small split on his line on thin part of line -‐ split is above the clamp

9 Patient has got a swollen right arm near her picc line. She is not able to move it very well. Feels like it is bruised

10 Pain/itching at port a cath line site in neck

11 Exit site of Hickman line redness worse. Redder, angrier, oral Fluclox 5/7

12 Bloods taken by community nurse today. Hickman line entry point red. No pain, respiratory rate slightly elevated, pale and restless

Miscellaneous

1 Mum said patient had his normal medication and breakfast. He sat down to do some schoolwork and found his fingers were pink, hot to touch and slightly mottled in appearance. He got up and walked around and his fingers returned to normal after 10 minutes

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2 Parents contacted -‐ oral antibiotics out of date

3 Has had continued blood sugars > 10 for last 2/7, and over previous weekend. Have been correcting this at every meal but is continuing.

4 Concerns re contact with children who have been in contact with a child with measles.

5 Query infected finger. Little finger appears infected on hand. Green this morning. Painful to touch but not otherwise. No tracking of infection up hand and no high temperatures

6 Patient is refusing to take his oral medications, due Dexamethasone and Acyclovir.

7 Patient has pins and needles in his feet and ankle

8 Right knee swollen -‐ 2 days heat overnight. Full movement no pain, still enlarged in relation to left knee -‐ in school currently

9 Weight is 34.5kg -‐ weight down. If below 35kg to contact ward

10 Patient is under shared care. Known with ALL. Developed swollen face, no fever (concern about access ???)

11 Swelling & water retention. No temp or pain

12 Patient is yellow

13 Just finished Cytarabine. 6MP when does it stop, started 1 week ago Monday wk11. Wants to know when course ends. Next clinic Tuesday coming. Dad calling

14 Patient has been incontinent of urine x3 today. No pain or discomfort when passing urine

15 Patient's tutor has said that her son has chicken pox

16 Parents accidently gave patient a dirty bottle of milk instead of the clean one> Patient appears well but parents are concerned it might be a problem

17 Finished cyclophospamide

18 Swollen area on scar at back of head. It feels like a blister

19 Gasping for breaths when feeding

20 Attended clinic this am. Blood count checked. Apyrexial. She is worried, as patient will not take milk or diet. Is drinking some clear fluids

21 Mum rang as she has confirmed shingles -‐ for advice


22 Patient is receiving GCSF as an outpatient. Noticed last couple of nights that she has been quite sweaty overnight. ? Caused by the GCSF, just wanted to let someone know

23 Worried about lack of calorie intake and weight loss. Tried 2 x milk boluses following Metoclopramide, but vomited post. Is tolerating 60ml of H20 via NGT

24 Swollen face. Crying a lot over the day. Slightly swollen abdomen

25 Patient is still yellow. Have we got his counts back yet? Also he has mouth ulcers

26 Patient feeling tired. Mum states that HB 8.5 on Wednesday

27 Swollen glands in neck, fine concerning everything else, no sickness, diarrhoea, temperature. OK to go to GP. Mum just checking

28 Mum called to enquire if she could give paracetamol as patient has a cold and stuffy nose

29 Feed pump alarming constantly -‐ advise what to do

30 Patient's mum was enquiring if she could give Tixylix syrup to Michelle for a tickly cough

31 Not sure if patient should be finished taking his dex or if he needs 14 days

Bleeding

1 Nose bleed -‐ small amount, lasted a few minutes, self resolved. Mum stated this happen as previous Methotrexate

2 Bleeding vaginally, Mum says approximately ' 1 cup, a lot'

3 Patient been to toilet and when mum wiped her there was some blood on the tissue from her vagina, not a lot. Not happened since radiotherapy

4 Woke up and noticed 6cm blood spillage on patient's pillow? From ear as dry blood there, nose and gums clear

5 Patient due to visit PODU tomorrow for platelet check. This am noticed dried blood in ear and some bruises on head. Temperature fine

6 Patient went to the toilet and produced a small stool. Upon wiping patient's bottom parents noticed that blood was on the tissue. Only small amount. No further bleedings, completely well apart from this. Also had slight bleed from mouth when lost a tooth

Eye problems

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1 Sore eyes -‐ streaming and itchy

2 Have pink, gunky eyes. Had conjunctivitis 2 weeks ago, had eye drops and antibiotics

3 Conjunctivitis -‐ was on the ward yesterday. Started treatment with eye drops. Has been wheezy O/N sounding croupy

4 ? Conjunctivitis

5 Eye is swollen, red and pussy (yellow). Patient has been seen by the community nurse and was told to ring the ward

6 Patient is complaining of sore eyes, stinging. Not red. Lethargic and moody. Affecting activity yesterday evening

Sign of Infection

1 Patient has a cough and green snotty nose

2 Mum rang. Noticed scabs around nose this afternoon that look like Impetigo that Dad recently had treatment for

3 Admitted to Sunderland on 15/01/2014 for IV antibiotics for Cellulitis. Sore during administration, continued to use. Discharged on 17/01/2014, Sore with swelling to hand on an evening

4 Cold sore on lip. Jack told Mum he had a 'funny' feeling in his leg but it wasn't sore

5 Patient is 'loaded' with cold. Apyrexial. Tired, sleeping for longer periods

6 Infected thumb -‐ pus more green today

7 Patient has got oral thrush. Mum asking for advice from doctors or to see out of hours doctors

8 Pus coming out of ear. Amoxil finished yesterday

9 Lethargic this morning. Mum noticed patient's voice sounded strained, mum looked into her mouth and saw white spots around her mouth

10 Caught sickness and diarrhoea (brother has had bug)


Appendix 5 : Record of treatment regimen. Chemotherapy Vincristine 5 Vincristine and Carboplatin 1 Vinblastine 1 UKALL 4 TVD 1 Triple intrathecals 1 ALL 12 ALL B 5 Infant ALL 1 Regimen C 14 C (Tuesday VCR 1 LIST LP/IT) 1 C -‐ Methotrexate & Mecaptopurine 1 Regimen A 5 Rapid COTEC 2 Post HSCT 1 Post high dose chemo 2 Packer -‐ cycle 8 1 Single chemo drug 1 OEPA 1 Maintenance 10 LGG 2 1 LCH Guidelines (Vinblastines) 1 Landi 4000 unit daily am 1 JDE 1 Carboplatin/Etoposide 1 Induction 1 Indamethacin started Dec 2013 1 Immunoglobulin therapy last week 1 ICH Guidelines -‐ own protocol 1 HRNBL 1 Hodgkins Lymphoma 2 HLH 2004 V2 2010 Guideline 1 Evasitin and Irinotecan 1 Euromos 1 Euro-‐Ewings 99 1 EPSSG 1 DLIs 1 BNHL 1 Augmented BFM consolidation C 1

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Aspavin 1 AML 1 ADE 1 A Cytarabine 1 Clinical trials SiOP Wilms 2001 Study WT 2002 or trial no 784 1 RMS 2005 1 Bone marrow transplant trial (pre-‐treatment) 1 Post bone marrow transplant Post BMT 5 Supportive Blood transfusions Off, completed or not commenced treatment yet Off treatment 1 Not started yet 2 Finished 5 No active treatment None 1 Surgery Surgery/post op 2 Regimen not recorded but some information given Date of last treatment only 8 Last treatment 7/7 2 Every Monday 2 Every week for 3 weeks then Doxyrubicin every cycle Illegible data Illegible data 4 Diagnosis instead of regimen Diagnosis 3 Carer unsure of treatment regimen 1 NB one patient was post chemotherapy and had also received radiotherapy during the same year.

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