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Darwin Centre for Young People Annual Report: April 2018- March 2019

Darwin Centre for Young People Annual Report 2018-19

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Table of Contents

About Us .................................................................................................................... 3 Introduction ............................................................................................................ 3 Our Aims and Goals ............................................................................................... 3 Treatment and Programmes .................................................................................. 3

AMBIT Approach ............................................................................................... 5 The Darwin Learning Centre School .................................................................. 5 Patient and Parent Involvement ......................................................................... 5

Our Performance ................................................................................................... 6 Activity period in this report .................................................................................... 6

Clinical Activity ........................................................................................................... 8 Bed Occupancy ...................................................................................................... 8 Referrals ................................................................................................................ 8 Admissions ............................................................................................................. 8

County of Origin ................................................................................................. 9 Waiting Times .................................................................................................. 10

Discharges ........................................................................................................... 10

Length of Treatment ........................................................................................ 11 Formal Complaints ............................................................................................... 12

Serious Incidents ................................................................................................. 12 Clinical Effectiveness ............................................................................................... 12

Overview and Aims of Routine Outcome Measurement....................................... 13 Description of Patient Group ................................................................................ 15

Gender ............................................................................................................. 15

Age .................................................................................................................. 15 Diagnosis ......................................................................................................... 15

Mental Health Act Status ................................................................................. 17 Other Demographic Variables .......................................................................... 17

Length of History .............................................................................................. 17 Past Treatment ................................................................................................ 18

Prior Social Circumstances .............................................................................. 18 Results ................................................................................................................. 19

Children’s Global Assessment Scale (CGAS) .................................................. 19 Health of the Nation Outcome Scales for Children and Adolescents

(HoNOSCA) ....................................................................................................... 20 Strengths and Difficulties Questionnaire (SDQ) ............................................... 20 Affective Reactivity Index (ARI) ....................................................................... 22

Service User and Parent/Carer Feedback and Experience ...................................... 26 News and Updates ................................................................................................... 31

Teaching and Training ......................................................................................... 31 Research Database and QNIC ROM ................................................................... 31

References ............................................................................................................... 32 Appendices .............................................................................................................. 34

A Word of Caution on Routine Data and its Interpretation ............................... 38


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About Us

Introduction The Darwin Centre for Young People is an NHS Tier 4 adolescent inpatient acute ward based in Fulbourn, Cambridge. We offer assessment and treatment for young people aged 12-17 presenting with severe and acute mental health problems. Young people are referred by their local mental health services if they have been unable to make progress whilst remaining at home with the support of local outpatient treatment. The unit has provision for 14 patients, including up to two day patients. We provide services to young people from Cambridgeshire, Peterborough, Norfolk, Suffolk and Bedfordshire although young people from all areas are eligible for referral/admission subject to funding agreements and capacity for the family to travel to the centre. This report is aimed at all those with an interest in the Darwin centre, including patients, families, Commissioners, external agencies/clinicians and Darwin centre staff. It aims to openly report and feedback on work of the unit, outcomes and developments during the activity period. Our Aims and Goals We aim to provide a high quality, multi-disciplinary mental health service for young people experiencing severe emotional and/or mental health difficulties. We offer a systemic approach to the needs of the young people and their family, and we work in close partnership with patients, parents and/or carers. Our systemic approach means we aim to understand and work with the wider context and relationships in the lives of young people who come to the Darwin Centre We pride ourselves on our ability to work closely and effectively with external children’s agencies and education in order to ensure that the needs of the young person are met both whilst in our care and after discharge. Treatment and Programmes We aim to offer young people a variety of activities as part of a therapeutic programme, which we expect all young people to take part in. They are given opportunities to work both individually and as part of a group. During a young person’s stay, they will be offered a comprehensive range of assessment and treatments by our multi-disciplinary team composed of doctors, nursing staff, consultant, family therapists, clinical psychologists, research assistant, occupational therapist, art and music therapists, outreach workers, activity co-ordinator, dietician and teachers. Weekly therapeutic groups include: a “DBT Skills” group (Dialectical Behavioural Therapy), occupational therapy led “Sensory Group”, and individual music and group art therapy. Other groups consist of “Have Your Say” group run by the Head of Parent and Patient Involvement, and a recreational “Out and About Group” to


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promote activity and fun outside of the unit. The length of stay and type of admission depends on the young person’s individual needs and circumstances; most young people stay for around four to five months, but we can offer longer treatment when appropriate. We aim to work in partnership with young people, their families/carers and local services to help them return home as soon as they can. We work towards supported home leave very quickly, often within the first two weeks of admission.

Service Development Project The Darwin Centre for Young people undertook a service development project to re-design and define their clinical pathways as well as looking at planned and unplanned admissions. The project included 8 workstreams which are listed below, included is also a brief description on what has been completed during the project:

1. Clinical Service Model - The ‘as is’ map for past CSM & ‘to be’ maps for new CSM created, Psychology, Social Care, Education, Family Therapist and Occupational Therapy pathways created. Planned and unplanned pathways defined, referral meetings started for all new, existing and planned discharges on a weekly basis.

2. Operational – Induction, update the Operational procedure, Updating and review of all Standard Operational procedures, completion of safeguarding actions and expectations of the ward to parents and young people.

3. Training - Identified training required to support the new Clinical Service Model, and to upskill ward staff.

4. Infrastructure – Specialist project manager assigned, review undertaken of all aspects of the ward including staff room, gym development, sensory room development, staff shower room, ward furniture and general decoration.

5. Workforce – Plan to increase workforce which included creating research posts, splitting Clinical nurse specialist roles to work late shifts and 1 weekend in 3, recruitment events at the Darwin and attending recruitment events around the county, up skilling existing staff for retention and ongoing rolling adverts.

6. Communication and Engagement – Plan included ongoing publicity for ward to show good work being done.

7. Operational Development – Specialist Project manager assigned, 360 assessment for Senior leadership team, MBTI for all staff to complete and monthly pulse survey introduced to hear and respond to staff concerns. Facilitation of away days and work to develop the team.

8. Technology and Reporting – Review of bed board and activity recording in addition ward technology upgraded.

An additional workstream was introduced to incorporate the safeguarding work which included the young people creating an anti-bullying charter, staff raising a concern, Safeguarding decision making toolkit and the start of Darwin values workshops which will continue post project handover as part of a whole project handover to business as usual with quarter/half annual reviews scheduled for progress updates. Phase 2 of the development is to create the ‘Home treatment team’ which will gate keep admissions and discharges on the Darwin, the aim of this is to reduce hospital admissions and length of stay. This is to be revisited during 2020 as part of the New models of care.


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AMBIT Approach

In January 2013 we introduced an innovative team-based framework called AMBIT (Adolescent Mentalization-Based Integrative Therapy). At its core is mentalization, which is the capacity to make sense of one’s own and other people’s behaviour in terms of intentional mental states (for example feelings, beliefs, desires, reasons, needs1). The ability to think about and make sense of one’s own thoughts and feelings is a critical part of managing one’s own feelings. In addition, thinking about other’s thoughts and feelings is central to improving interpersonal relationships. AMBIT provides a framework for promoting a team-wide approach to our work with young people, families, wider support networks and across the staff team. Through AMBIT, we aim to stimulate and promote mentalization both in the young person and those who work with/care for the young person. We aim to foster a secure and trusting relationship between young people and members of the Darwin centre team as we recognize that therapeutic change for many young people occurs through relationships with others.

The Darwin Learning Centre School Young people at the unit attend the Darwin Learning Centre, which is part of the Pilgrim PRU. At its last OFSTED inspection in November 2016, the Pilgrim Pupil Referral Unit was rated “Outstanding” for the third time in succession. The learning centre aims to enable students to continue their mainstream school work as much as possible, with staff liaising closely with students’ home schools. Each student has their own Individual Education Plan. The school provides specialist subject teaching of the core curriculum, as well as a flexible learning environment where students can carry out their own individual studies. The Learning Centre also offers a wealth of additional qualifications including; OCR Cambridge Technical qualifications at levels 2 and 3, functional skills at all levels, Trinity College Arts Award, Unit Award AQA Scheme and AQA PSE. As the Darwin Learning Centre is a registered exam centre, it is possible for students to take their exams here and students are supported to pursue their future and further education options. We also support students who are seeking training or employment. In the summer of 2018, 91.7% of exams taken were passed at grade 5 or above. Students are also involved in a range of extra-curricular activities, such as woodwork/DIY, music (piano, singing and guitar) and PE. The unit has a gym which patients can use with a member of staff present. Staff members are trained to safely support the young people in the gym and can create personalised fitness programmes.

Patient and Parent Involvement The Darwin Centre has a dedicated involvement post: The Head of Patient and Parent Involvement (HOPPI). The HOPPI’s main role is to ensure that young people and parents are given opportunities to be involved in their treatment and participate in the development of the service more generally. Occupational Therapy Our Occupational Therapist focuses on enabling the young people to participate in meaningful and purposeful activities of daily life. The therapeutic approach considers how the young person’s current difficulties and health may impact on the things they


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want to do. It involves a creative, practical approach utilizing problem-solving and person-centred strategies, and can be achieved through a mix of individual and/or group sessions. Art and Music Therapy The Art and Music therapists work in time focused interventions with the young people at the Darwin on an individual or group basis and promote inclusion, independence, hope and optimism by celebrating the young people’s strengths and meeting the needs of individuals with appropriate music and art materials. Individuals who bring trauma or other challenges are supported to transform their experience creatively and as a result can gain a sense of empowerment and control through their therapy sessions. Art and Music therapies are unique for each young person, depending on what they want to achieve. The different arts mediums used in Art and Music therapy can be used to safely explore difficult thoughts and feelings whilst simultaneously having a transformative and creative experience. Art and Music therapy facilitates communication through nonverbal mediums, self-expression, rediscovery, renewal, regeneration and recovery. How we use outcome measures on the ward Emails displaying outcome measure analyses for each young person are regularly disseminated amongst the team. The reports are easy to interpret and help us to understand the young person and their situation better. Staff receive training on how to interpret the measures and incorporate the outcomes into their clinical practice. Upon discharge reports are generated to show change, this helps with staff morale especially when the ward is particularly challenging. The Revised Children’s Anxiety and Depression Scale (RCADS) is completed with every young person before their CPA and results are integrated into CPA reports. The analyses and graphs display change throughout admission and allow for discussion with wider networks, including community and school teams within CPA meetings.

At admission the young people are asked what issue in their life they would like to change during their stay at the DCYP and how this affects them on scale of 1-10. This is also included in the CPA and MDT reports so that we can remind ourselves of what the young persons’ goals are and if we are all moving together in the right direction. The young people also have a chance to review their outcome measures and voice how they feel the analyses and graphs represent them, which is also shared amongst the team.

Our Performance

The performance of the service is judged based upon service users’ experience, satisfaction and the use of validated clinical outcome measures which this report will present. We also work in line with QNIC (Quality Network for Inpatient CAMHS) and CPFT standards on key areas such as care planning and the ward environment. As a result of our performance against the QNIC standards in February 2017, the Darwin Centre has been awarded accreditation until 2020. Specific strengths highlighted during the accreditation review include the pleasant ward and school


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environments, including large outdoor spaces, accommodation for different spiritual and cultural needs, a broad skill mix within the team, and the supportive atmosphere reported by both staff and patients. Areas of improvement, which we have acted upon, include evidencing of training across both permanent and bank/agency staff members, and demonstrating that information is communicated effectively to young people and their parents and carers.

Activity period in this report This report describes activity during the financial year from 1st April 2018 to 31st March 2019. In addition, the results can be used to monitor the appropriateness of unplanned admissions, which is a current aim of the Darwin Centre. The information presented in this report was collected from a variety of sources: a large amount of it is recorded on an electronic database maintained since 2012. Other sources include the Head of Patient and Parent Involvement’s records; CPFT’s business IT and Learning and Development departments; and Serco’s Datix department.

Contact for Further Information We welcome comments, feedback and questions about this report to: Laura Hannah, Research Assistant, [email protected] Jocelyne Boston, Clinical Psychologist: [email protected] Visit our website www.darwincentre.cpft.nhs.uk for an electronic version of this and previous reports, for the QNIC Accreditation Report 2017, and for more information about the Darwin Centre for Young People. If you would like more information on the AMBIT approach and how it applies to the Darwin Centre, please visit http://ambit-darwin.tiddlyspace.com/


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Clinical Activity

Bed Occupancy Figure 1 shows the proportion of occupied beds per month during the financial year 2018-2019, based on 14 beds. Figure 1: Bed Occupancy Rates per Month

Referrals During 2018/2019, the Darwin Centre received 62 referrals, of which 38 were urgent referrals and 27 were planned. Many referrals were for urgent or emergency beds that we were unable to accept as there was not a vacant bed within the referrer’s timescale. Admissions We admitted 31 young people during the financial year, all patients were admitted with an inpatient status. Five young people had been admitted to our service in previous years and three young people were admitted twice during this financial year. Figure 2 shows the number of young people admitted to the Centre each month.

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Figure 2: Admissions per Month (n = 31)

County of Origin

Figure 3 shows the county of origin of young people admitted during the financial year. Most young people were referred from professionals within Cambridgeshire (84%), followed by Bedfordshire (10%), Hertfordshire (3%) and Norfolk (3%).

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Figure 3: County of Origin of Young People Admitted this Year

Waiting Times

Of the admissions that took place this year, 4 were through emergency referrals (with 24 hours), 7 through urgent referrals, and 20 through planned referrals. The average waiting time between referral and admission was 4.5 days (SD= 7.4). Table 1 shows the percentage of those

Table 1: Waiting Times from Referral to Admission by Referral Type

Waiting Times Emergency Urgent Planned

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Discharges We had 31 discharges this year, all patients received inpatient treatment. One young person unfortunately died and has not been included in the discharge data. The number of discharges per month is displayed in Figure 4.

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Figure 4: Discharges per Month (n = 31)

Length of Treatment The average length of treatment was 101 days (3.3 months), Median = 36 days, Mode = 35 days. Figure 5 shows the variation that can occur within this, with patients staying from one week to over a year (SD = 120). Furthermore, it is worth noting that part of young people’s treatment involves spending time on home leave and integrating back in the community, therefore there will be periods during the admission when young people will not be spending all their time on the unit.

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Figure 5: Length of Treatment (n=31)

Treatments Post-Discharge.

All discharges were planned, and most young people were referred back to their referrer within outpatient community services (CAMHS) (7%), two young people were referred to the Early Intervention Psychosis Team (7%) and seven young people were transferred to another Inpatient CAMHS unit (23%). Most of the young people were discharged back into their family homes (71%), one young person was placed into care of the local authority and another in a residential care home.

Formal Complaints We received nine formal complaint during this period; six relating to care and treatment, one to communication, one to staff attitudes and one to leadership. All complaints have been investigated and resolved.

Serious Incidents Two serious incidents occurred during this time period. The first of which involved a patient reporting alleged sexual assault from another patient (female to female). Following the report, a referral was made to safeguarding, Cambridgeshire Police were informed and involved, support was provided for both the reporter and alleged perpetrator, who had already been discharged from the Unit prior to the report, and both of the young people’s social workers were informed. The team allocated protected time to reflect on the incident and identify subsequent learning points for the future. A monthly safeguarding supervision has been implemented for the team alongside “Drop in” sessions with the CPFT Children’s Safeguarding Team. The second incident is currently still under investigation.

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Clinical Effectiveness

Overview and Aims of Routine Outcome Measurement The importance of routine outcome measurement in evaluating clinical effectiveness is highlighted in national policies such as the UK Government’s NHS Outcomes Framework (Department of Health, 2010), and the National Service Framework (NSF) for Children and Young People, “Every Child Matters” (Department of Health, 2007). At the Darwin Centre we routinely collect questionnaires at admission and discharge from young people, parents/carers, and clinicians. In this way, we ensure that a variety of viewpoints are taken into consideration. The measures that we use are those recommended by the QNIC (Quality network for inpatient CAMHS). These include the Children’s Global Assessment Scale (CGAS; [2]), the Health of the Nation Scale for Children and Adolescents (HoNOSCA; [3]), and the Strengths and Difficulties Questionnaire (SDQ; [4; 5]). Since summer 2013, we started recording a range of demographic variables (e.g., previous treatment received, family composition, ethnicity, school attendance, etc…), which we share regularly (in anonymised format) with the QNIC central team for aggregate analyses and comparisons with other inpatient services. In April 2014, we added the Affective Reactivity Index (ARI; [6]) to our Routine Outcome Measures to assess changes in irritability and proneness to anger during their admission. Additionally, in November 2016 we began to employ the SCORE-15 [15] with both the young people and their parent/carers to evaluate family functioning and the RCADS [16] with the young people to measure depression and anxiety. Our long-term aim is to be able to capture and evaluate what leads to change and predicts positive outcomes for the young people that we treat here at the Darwin Centre. The demographic and clinical outcomes data presented in this section are based on the 26 young people discharged between 1st April 2018 and 31st March 2019. It should be noted that young people in this cohort were not necessarily admitted during the same financial year. However, the presentation of data in this way allows admission and discharge data of the same individuals to be matched, which is how outcome measurement is defined [7]. Table 2 provides an overview of the number of measures we collected during the year. As can be seen, we do not have complete data available for all patients (i.e. not all young people, parents/carers and clinicians completed the measures at both admission and discharge). This is a challenge faced by all CAMHS services that we are collectively working to improving; A recent audit of three CAMHS services found that only 16% of cases had complete data [8].


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Table 2: Numbers and Percentages of Measures Collected This Year *

Admission Discharge Complete

(Both Time Points)

Measure: N % N % N %

CGAS

- Clinician 31 100 31 100 31 100

HoNOSCA

- Young Person 27 87 13 42 12 39

- Parent 27 87 13 42 11 35

- Clinician 31 100 31 100 31 100

SDQ

- Young Person 26

84 13 42 12 39

- Parent 27 87 14 45 12 39

ARI

- Young Person 27 87 13 42 12 39

- Parent 27 87 13 45 11 35

SCORE-15

- Young Person 18 58 12 39 9 29

- Parent 13 42 12 39 5 16

RCADS

- Young Person 17 55 13 42 8 26

* based on 31 young people discharged this year.


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Description of Patient Group

Gender

There were 26 (84%) females and 5 (16%) males, in this year’s cohort.

Age The average age at admission was 15.5 years, with a range of 12 to 17 years.

Diagnosis The young people that are referred and admitted to the Darwin Centre usually have a complex psychiatric history. Figure 6 shows the different categories of psychiatric disorders (according to ICD-10 criteria) that the young people presented with at the Darwin Centre. As can be seen, most young people presented with neurotic, stress-related and somatoform disorders, such as post-traumatic stress disorder. Other prevalent diagnoses were mood disorders for example; moderate depressive episode and anxiety. 46% also met diagnostic criteria for a secondary or tertiary comorbid psychiatric disorder. These results in Figure 7 display the complexities that the young people present with at the Darwin Centre.


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Figure 6: Primary Diagnoses per Broad ICD-10 Categories


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Figure 7: Co-morbid Diagnosis per Broad ICD-10 Categories

Mental Health Act Status A 48% were placed under the Mental Health Act at either on or during admission. Of those placed under the MHA, 21% were placed under Section 2 – admission for assessment, and 79% under Section 3 – admission for treatment.

Other Demographic Variables

Length of History Figure 8 shows the length of history that young people have presented with current symptoms at similar severity before admission. Most young people have presented with symptoms between 1-2 years.


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Figure 8: Length of history of symptoms prior to admission (N=31)

Past Treatment

All, but one, of the young people had received outpatient CAMHS treatment prior to admission. Some received additional treatment; 26% had previously been admitted to a CAMHS inpatient setting, 10% had received treatment on a pediatric ward for mental health reasons, one young person had received treatment from a specialist eating disorder unit and another from an adult psychiatric ward. Prior Social Circumstances Most young people were under the care of both of their biological parents (58%). 19% were cared for by their biological mother and their mother’s partner and a further 19% received care from a single parent. One young person was under the care of adoptive parents. Most young people attended or were registered at a mainstream secondary school prior to admission (77%), followed by enrolment in further or higher education (16%). One young person received online education from a specialist education centre (The Red Balloon Charity) and another did not receive any educational input. Twenty-one (68%) of the young people had a parent or carer with a psychiatric diagnosis. Furthermore, recent data has identified Adverse Childhood Experiences (ACE’s) as strong predictors of poor health and wellbeing outcomes. In this

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population 87% had at least one ACE and 45% had more than 4. It is important to note that ACE’s are highly underreported and therefore the actual number in this population may also be more that what is currently reported.

Results

Statistical tests were used to confirm whether there were significant differences in CGAS, HoNOSCA, SDQ, ARI, SCORE-15 and RCADS scores at admission and discharge. Where data were normally distributed and there were equal variances between samples, Paired t-tests were run to assess these differences. Where data were not normally distributed, the Wilcoxon signed-rank test was used.

Children’s Global Assessment Scale (CGAS) The CGAS is a clinician-rated measure of global functioning, including psychological, social and school functioning, on a continuum from 1 (“needs constant supervision”) to 100 (“superior functioning”). In addition to being completed at admission and discharge, CGAS ratings are also carried out on a weekly basis as part of ward round and are discussed by the MDT together with the young person. As can be seen from Figure 9, the mean CGAS scores at admission were in the 31 – 40 range, indicating a major impairment in functioning in several areas or an inability to function in one area. At discharge, mean scores improved to the 51 - 60 range, which indicates variable functioning with sporadic difficulties/symptoms in several areas where disturbances would be apparent in specific settings. A paired samples t-test was conducted to compare the scores at admission and discharge, the test showed that there was a significant change between the two time points (t(30)=-6.77, p<.001).

Figure 9: Means of CGAS Scores at Admission and Discharge

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Health of the Nation Outcome Scales for Children and Adolescents (HoNOSCA) The HoNOSCA is a 13-item widely-used measurement tool that assesses young people’s current mental heath status, including behaviours, impairments, symptoms, and social functioning. There are three versions of the HoNOSCA: self-rated, parent-rated and clinician-rated. Each item is scored on a five-point scale from 0 (no problem) to 4 (severe problem). Therefore, a higher score indicates more impaired functioning. Total scores range from 0 to 52. As can be seen from Figure 10, young people, parents/carers and clinicians reported a reduction in HoNOSCA total scores at discharge. The reduction was significantly different for clinician scores (t(30)=7.41, p<.01). Figure 10: Means of Self-, Parent- and Clinician-Reported HoNOSCA total scores at Admission and Discharge

Strengths and Difficulties Questionnaire (SDQ)

The SDQ is a measure of behaviour and symptom severity and their impact on functioning. Both a self-reported and a parent-reported version exist. It consists of 25 statements that relate to different aspects of functioning. These can be added up to obtain a total score, as well as five subscale scores: emotional symptoms, conduct problems, attention and concentration, peer problems and pro-social behaviour. Items are scored on a three-point scale from 0 (Not true) to 2 (Certainly true). A higher score indicates more severity, apart from the pro-social behaviour scale, in which a higher score indicates better functioning. Published thresholds for clinical and borderline ranges of symptom severity are provided for ease of interpretation [14]. Figure 11 shows the means of SDQ total scores at admission and discharge, reported by young people and their parent/carer. At admission the self-reported mean total fell into the top part of the “Borderline” band, and at discharge reduced to

Lower scores = better functioning


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the bottom end of the band. The parents/carers reported a mean total within the “Abnormal” band at admission, this mean total then reduced into the “Borderline” band at discharge.

Figure 11: Means of Self- and Parent-Reported SDQ Total Scores at Admission and Discharge

Figures 12 and Figure 13 provide the breakdown of self- and parent-reported mean scores for each of the five subscales.

Figure 12: Means of Self-reported SDQ Subscale Scores at Admission and Discharge

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The self-report shows a decrease in the subscales; emotional symptoms, conduct problems hyperactivity and concentration problems, and peer problems, however these reductions were not significant. The pro-social behaviour subscale increased at discharge and this difference from admission to discharge was significant (t(11)= -2.42, p<.05). Figure 13: Means of Parent-reported SDQ Subscale Scores at Admission and Discharge

The Parent-report shows a decrease across the subscales; emotional symptoms, conduct problems, hyperactivity and concentration problems and peer problems, from admission to discharge. Pro-social behaviour decreased. These differences were not significant. It should be noted that the insignificant results are more likely to be due to the low number of responses. In order to detect a large effect size, at least 15 matched cases are needed to have sufficient power when running paired sample t-tests. However, in this case there were only 13 (self-reported) and 13 (parent/carer) matched cases available thus giving insufficient power to detect significant results.

Affective Reactivity Index (ARI) The ARI is a self and parent measure of irritability and proneness to anger. It consists of six questions assessing 1) the threshold for an angry reaction; 2) frequency of angry feelings and behaviours; 3) duration of such feelings/behaviours as well as a question about the extent to which irritability interferes with everyday life. Items are scored on a three-point scale from 0 (Not true) to 2 (Certainly true). Higher

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scores indicate higher irritability. Figure 14 shows the means of ARI scores at admission and discharge reported by young people and their parents/carers. Figure 14: Means of Self and Parent reported ARI at Admission and Discharge

As shown in Figure 13, self-reported and parent-reported mean ARI scores decreased at admission to discharge.

SCORE-15 Index of Family Functioning and Change The SCORE-15 is a self-report measure completed by both the young people and their parents. The questionnaire assesses aspects of family life that are important for therapeutic change. The SCORE-15 has 15 Likert scale items, and six separate indicators, three of them qualitative. The measure is structured so that different perceptions within the family can be easily compared (15). The scale items generate; a total score (ranging between 15-75, higher total scores indicate the worse a person rates their family), three dimension scores and an average score (ranging between 1-5, 1 being better functioning). The three dimensions include: Strengths and Adaptability, Overwhelmed by Difficulties and Disrupted Communication. The average mean scores reported by the young people decreased across all three dimensions from admission to discharge, however the parent/carer reported scores did not. Both informants reported a decrease in the severity of the problem from admission to discharge, furthermore on average the young people reported that they felt their family was managing better at discharge compared to at admission. However, the decrease was not significant.

The Revised Children’s Anxiety and Depression Scale (RCADS) The Revised Children’s Anxiety and Depression Scale (RCADS) is a self-reported


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questionnaire that measures youth anxiety and depression. The sub scores generated correspond to the DSM diagnoses of separation anxiety disorder, social phobia, generalized anxiety disorder, panic disorder, obsessive-compulsive disorder, and major depressive disorder. Figure 19: The Revised Children’s Anxiety and Depression Scale (RCADS)

Figure 19 displays the average results reported by the young people at admission and discharge. All mean scores; Separation Anxiety, Generalized Anxiety, Panic, Social Phobia, Obsessions/Compulsions, Depression, Total Anxiety and Total Anxiety & Depression, decreased from admission to discharge. The difference between the mean scores at admission and discharge for the Generalized Anxiety (t(7) = 2.58, p<.05) and Depression scale (t(7) = 2.77, p<.05) showed a significant decrease. Furthermore, all scales reduced to below the clinical threshold. Staff and Young People’s Perspectives of Self-Harm Audit Our Research Assistant and visiting medical student from Cambridge University conducted an audit on the ward and investigated self-harm perspectives. The aim of the audit was to compare patient and staff beliefs toward reasons for self-harm. "The Inventory of Statements about Self-Injury" questionnaire was distributed to both patients and staff at the Darwin Centre. The young people were required to independently answer questions pertaining to their own self harm, and the staff relating to the patients. The questionnaire asked participants to rank 39 statements as not relevant (0), somewhat relevant (1), or very relevant (2). There were 13 categories each with a score of 0-6. Results: 91% of the patient group and 85% of staff members completed the

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Clinical Threshold


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questionnaire. Young People and Staff Members had a mean score within 1 score of each other across 8 categories - "Affect Regulation", "Interpersonal Boundaries", Self-Punishment", "Self-Care", "Anti-Disassociation / Feeling Generation", "Anti-Suicide", "Toughness", "Autonomy" - all of which had overlapping interquartile ranges (IQRs). IQRs also overlapped across the "Sensation Seeking" category, however the Staff Member mean score was 1.2 scores higher than the Young People mean. In the remaining 4 categories – "Peer Bonding", "Interpersonal Influence", "Marking Distress" and "Revenge" - the Young Person mean score was at least 1.5 scores lower than the Staff Member mean score and the IQRs did not overlap. Conclusion: Young people and staff member's beliefs were closely aligned in 8 out of 13 categories. In the 4 categories where there was a marked difference (non-overlapping IQRs) Staff Members had higher mean scores than Young People. All these categories involve relationship of the young person with other people. This difference may demonstrate a limited insight in the young people on the influence other people have on their self-harm or that staff members are overestimating the influence of other people on a young person's self-harm. The report was shared with the staff and young people and used to facilitate mentalizing conversations and consider how to develop the study further. The box plot below displays the results in graph form. Figure 20: Graph to compare views between staff members and young people towards motivations to self-harm.


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27

Patient and Parent/Carer Feedback and Experience 2018/19

Inpatient iPad Survey

CPFT requires each inpatient unit to give every service user the opportunity to

complete a monthly anonymous iPad survey, in which they are asked a series of

questions about the service they are receiving. The questions cover the following

areas: care and welfare, nutritional needs, respect and involvement and additional

support. Service users are under no obligation to complete the survey and their care

will not be affected in anyway should they choose not to complete the survey.

The data examined and reported on below is taken from the period: 01.04.18 –

31.01.19

The table below presents the results from the 39 surveys that young people

completed between this period

Survey Questions % of Times Young People

responded YES

Are Staff polite and friendly? 88

Do you have a care plan? 75

Do you know who is the main person organising your

care and treatment during your stay on the ward? 73

Are there activities, groups or things to do during the

weekday? 100

Do you know what your medication prescribed by this

ward is for? 92

When you arrived on the ward did staff make you feel

welcome? 88

Do you understand what is in your care plan? 73

Do you feel staff treated you well? 92

Were you told about the possible side effects of your

medication prescribed by this ward? 88


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Are you involved in decisions about your health? 84

Were you asked your views when medication was

prescribed by this ward? 79

Have you had a weekly meeting with your

Doctor/Nurse to discuss your care? 68

Are there activities, groups or things to do during the

evening and weekend? 54

Do staff support you to feel safe during your stay on

the ward? 48

Has a member of staff ever talked to you about

keeping healthy (for example, diet, exercise, sleep,

stopping smoking)?

39

In addition, of young people who completed

surveys, 3% rated their overall care as Very

Good, 31% as Good , 26% as Fair, 8% as poor

and 33% of young people stated that this

question does not apply to them.

The overall food satisfaction rating for the ward for this period was 33.33%. The

Darwin Centre provides fresh breakfast and lunch for the young people, made by the

housekeeper. Young people review the options regularly and can make suggestions.

Additional comments made on this question regarding food include:

‘The housekeepers food is amazing loads to

choose from cook chill is okay that’s what ruins it

but otherwise the food is good cooked by the

housekeeper’

‘The housekeepers food is good but cook chill is

horrible overall it's ok cause we have also the

housekeepers food and that is great’ ‘Cook chill is

okay. The house keeper’s food is lovely and very

much enjoy’

This suggests the low score in this area is due to


29

the catering provided at dinner.

Our highlighted areas for improvement are:

• Improve rating for food on the ward

• Ensuring staff talked to patients about keeping healthy (for example, diet,

exercise, sleep, stopping smoking)

• Increase overall care ratings

• Increase patients feeling of safety on the ward

• Increase rating for activities, groups, things to do on the ward especially at

weekends

• Ensure patient have weekly meetings with their Doctor/Nurse to discuss care

Carer Survey

The Carer Survey was launched in September 2015. We ask parents/carers of

patients currently at the unit to complete the survey via the iPad or a paper version,

the data from which the Head of Patient and Parent Involvement enters onto the

meridian reporting system. We report on this data on a monthly basis and use both

the quantitative and qualitative data to improve practice.

Our target is to make sure we complete at least 2 surveys per month.

The table below presents the results from the 16 surveys parents/carers completed

between the periods 01.04.18 – 31.03.19

Survey Questions % of Times Parents/Carers

responded YES or Good

How would you rate the overall service received for

the person you care for? 83

How would you rate the support you receive as a

carer? 46

Have you felt able to raise concerns about the care

received for the person you care for? 69

Have you felt valued and listened to about the

support the person you care for has received? 69

Have you felt included and involved in all stages of

the journey for the person you care for? 59


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Our highlighted areas for improvement are:

• Improve support for parents/carers available

• Ensure Parents/Carers feel included and involved in all stages of the journey

for the person they care for

Patient and Parent/Carer Involvement

Activities to involve service users and their families continue to be prominent in the

culture of the service. Involvement activities this year included:

• A fortnightly “Have your say” meeting with all young people, where they can

raise worries, concerns, ideas or suggestions about the way the service

operates

• Young People being involved in Recruitment & Selection Panels

• 1-1 Advocacy

• Service Design & Development

• Feedback to government on the Mental Health Green Paper

• Development of new Parent/Carer Support Group

Compliments

Patients

‘Staff members have been very helpful in dangerous situations, and most put our

needs first’

‘Schooling is really flexible for our mental health - Staff are encouraging’

‘Staff try their best to help in any way they can’

‘Staff are very clear and supportive - encouragement - groups and activities are available - therapies are very open and helpful’ Parents/Carers ‘Excellent support’

‘Very pleased with the service and the efforts and input from staff’

‘Any concerns have been listened to and resolved’

‘Large but supportive team They know J well, have relayed info sensitively and correctly’


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News and Updates

Teaching and Training The unit offers on-going placements for junior doctors, psychiatrists in higher training, student nurses and trainee clinical psychologists. We also sometimes have student social workers and trainee art therapists on placement.

The whole team receive AMBIT training, and new members of staff are regularly trained as part of the rolling induction programme. As part of the Service Development Project staff have been offered additional training, provided by external agencies, including: Group and Individual based DBT Skills for Adolescents, Complex Trauma and Motivational Interviewing. Future training will cover Neurodevelopmental issues and Gender Dysphoria.

Research Database and QNIC ROM We share our data with QNIC Routine Outcome Measurement Service on a regular basis. This allows us to evaluate our service and compare our effectiveness to that of other inpatient services in the country. Furthermore, we are part of the QNIC ROM advisory group at the Royal College of Psychiatry, where we are working towards a new and improved digitally interactive ROM system.

In the future, we hope to be able to use the routine outcome data that we collect to understand what changes for young people during an admission to the Darwin Centre and what predicts positive outcomes. Summary

In general, all the outcome measures improved across the informants between admission and discharge. Significant changes included CGAS, HoNOSCA (clinician scores), SDQ Pro Social subscale reported by the young people, and the Generalized Anxiety and Depression subscales of the RCADS. The RCADS and SCORE-15 have provided additional insight and the Darwin team continue to build a research environment whereby outcome measures and therapeutic work can be entwined.


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References

[1] Bevington, D., Fuggle, P., Fonagy, P., Target, M., & Asen, E. (2012). Innovations in practice: Adolescent Mentalization-Based Integrative Therapy (AMBIT) – A new integrated approach to working with the most hard to reach adolescents with severe complex mental health needs. Child and Adolescent Mental Health, 18(1), 46-51.

[2] Shaffer, D., Gould, M. S., Brasic, J., Ambrosini, P., Fisher, P., Bird, H., & Aluwahlia, S. (1983). A Children's Global Assessment Scale (CGAS). Archives of General Psychiatry, 40(11), 1228-1231.

[3] Gowers, S.G., Harrington, R.C., Whitton, A., Beevor, A., Lelliott, P., Jezzard, R., & Wing, J. (1999). Health of the Nation Outcome Scales for Children and Adolescents (HoNOSCA). Glossary for HoNOSCA score sheet. British Journal of Psychiatry, 174, 428-431.

[4] Goodman, R. (1997). The Strengths and Difficulties Questionnaire: A Research Note. Journal of Child Psychology and Psychiatry, 38, 581-586.

[5] Goodman, R., Meltzer, H., & Bailey, V. (1998). The Strengths and Difficulties Questionnaire: A pilot study on the validity of the self-report version. European Child and Adolescent Psychiatry, 7, 125-130.

[6] Stringaris, A., Goodman, R., Ferdinando, S., Razdan, V., Muhrer, E., Leibenluft, E., Brotman, M. (2012). The Affective Reactivity Index: a concise irritability scale for clinical and research settings. Journal of Child Psychology and Psychiatry, 53(11), 1109-1117.

[7] Batty, M. J., Moldavsky, M., Foroushani, P. S., Pass, S., Marriott, M., Sayal, K., & Hollis, C. (2013). Implementing routine outcome measures in child and adolescent mental health services: from present to future practice. Child and Adolescent Mental Health, 18(2), 82–87.

[8] Hall, C. L., Moldavsky, M., Taylor, J., Sayal, K., Marriott, M., Batty, M. J., … Hollis, C. (2014). Implementation of routine outcome measurement in child and adolescent mental health services in the United Kingdom: a critical perspective. European Child & Adolescent Psychiatry, 23, 239–242.

[9] Johnston, C., & Gowers, S. (2005). Routine outcome measurement: A survey of UK child and adolescent mental health services. Child and Adolescent Mental Health, 10(3), 133–139.

[10] Law, D., & Wolpert, M. (Eds.). (2014). Guide to using outcomes and feedback tools with children, young people and families. London: CAMHS Press.

[11] Dawson, J., Doll, H., Fitzpatrick, R., Jenkinson, C., & Carr, A. J. (2010). Routine use of patient reported outcome measures in healthcare settings. BMJ, 340, c186.

[12] Wolpert, M. (2014). Uses and abuses of patient-reported outcome measures (PROMs): Potential iatrogenic impact of PROMs implementation and how it can be mitigated. Administration and Policy in Mental Health, 41, 141–145.

[13] Wolpert, M., Deighton, J., De Francesco, D., Martin, P., Fonagy, P., & Ford, T. (2014). From ‘reckless’ to ‘mindful’ in the use of outcome data to inform service-level performance management: perspectives from child mental health. BMJ Quality and Safety, Published Online First: [23 January 2014].

[14] http://www.sdqinfo.org/py/sdqinfo/c0.py. [15] Stratton, P, Bland, J., Janes, E & Lask, J. (2010) Developing a practicable

outcome measure for systemic family therapy: The SCORE. Journal of Family Therapy. 32, 232-258.

http://www.sdqinfo.org/py/sdqinfo/c0.py


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[16] Chorpita, B. F., Yim, L. M., Moffitt, C. E., Umemoto L. A., & Francis, S. E. (2000). Assessment of symptoms of DSM-IV anxiety and depression in children: A Revised Child Anxiety and Depression Scale. Behaviour Research and Therapy, 38, 835-855.


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Appendices Table 3: Means and Standard Deviations of All Measures at Admission and Discharge, for the "All Available" and "Complete" Samples – CGAS, HoNOSCA, SDQ and ARI.

Admission Discharge

All Available Complete All Available Complete

Measure: Mean SD Mean SD Mean SD Mean SD

CGAS 38.48 7.84 38.48 7.84 51.23 12.39 51.23 12.39

HoNOSCA Total

- Young

Person

22.67 11.56 19.50 10.54 15.00 11.30 14.92 11.80

- Parent/Carer 23.63 10.61 20.73 10.66 16.46 10.12 18.36 9.84

- Clinician 18.26 7.84 18.26 7.84 10.77 9.23 10.77 9.23

SDQ Total

- Young

Person

19.04 7.13 16.50 6.97 16.08 7.44 16.17 7.77

- Parent/Carer 19.48 8.34 18.00 8.51 16.29 8.77 17.33 8.99

ARI Total

- Young

Person

4.93 4.51 4.67 4.33 4.38 4.05 4.50 4.21

- Parent/Carer 7.26 4.92 7.00 4.84 6.13 5.08 7.27 4.69

Note: The “All Available” sample includes young people for whom at least one measure was available. The “Complete” sample includes young people for whom matched admission and discharge measures were available. The graphs in the main sections of the report are based on the “All Available” sample. Statistical tests based on complete samples. Table 4: Means and Standard Deviations of All Measures at Admission and Discharge, for the "All Available" and "Complete" Samples – SCORE-15.

Admission Discharge


SCORE-15

Measure:

Mean SD Mean SD Mean SD Mean SD


35

Average

- Young

Person

2.31 0.78 2.18 0.78 2.18 0.80 2.38 0.83

- Parent/Carer 2.00 0.59 1.68 0.44 2.13 0.79 1.78 0.55

Strengths and

adaptability

- Young

Person

2.41 0.96 2.36 0.92 2.25 0.95 2.49 0.95

- Parent/Carer 1.92 0.69 1.64 0.57 2.23 0.83 2.00 0.93

Overwhelmed by

difficulties

- Young

Person

2.17 0.83 2.02 0.72 2.08 0.82 2.20 0.91

- Parent/Carer 1.88 0.64 1.40 0.47 2.20 1.00 1.80 0.62

Disrupted communication

- Young Person

2.36 0.72 2.18 0.82 2.05 0.75 2.22 0.77

- Parent/Carer 2.18 0.64 2.00 0.51 1.93 0.74 1.56 0.33

Severity of the problem

- Young Person

8.44 1.54 8.29 1.80 5.70 2.75 5.14 3.02

- Parent/Carer 8.00 2.28 8.75 1.89 7.18 3.03 6.50 3.70

Managing as a family

- Young Person

5.28 2.67 5.13 2.23 3.36 2.66 3.00 2.20

- Parent/Carer 4.62 2.66 4.40 2.61 4.82 2.71 4.00 3.39


36

Helpfulness of therapy

- Young Person

3.94 2.78 4.00 3.12 4.27 3.38 4.25 3.69

- Parent/Carer 2.69 2.29 2.40 2.41 2.50 1.90 2.00 1.87

Note: The “All Available” sample includes young people for whom at least one measure was available. The “Complete” sample includes young people for whom matched admission and discharge measures were available. The graphs in the main sections of the report are based on the “All Available” sample. Statistical tests based on complete samples. Table 5: Means and Standard Deviations of All Measures at Admission and Discharge, for the "All Available" and "Complete" Samples – RCADS.

Admission Discharge


RCADS Mea

n

SD Mea

n

SD Mea

n

SD Mea

n

SD

Separation Anxiety 68.6

5

14.4

0

66.5

0

14.2

4

54.8

5

14.7

4

56.6

3

17.3

6

Generalised Anxiety 60.2

4

14.4

2

57.2

5

11.9

5

46.9

2

14.7

6

46.0

0

15.1

9

Panic 69.8

8

13.8

6

67.6

3

17.3

5

56.3

8

17.5

0

56.6

3

19.7

8

Social Phobia 61.5

3

13.8

6

60.6

3

14.3

8

51.3

1

14.5

7

53.0

0

17.3

9

Obsessions/Compulsio

ns

59.5

3

16.0

1

55.3

8

13.1

9

46.5

4

16.7

2

46.6

3

18.3

1

Depression 72.2

4

12.3

1

72.2

5

12.7

6

54.7

7

20.6

6

53.8

8

21.9

2

Total Anxiety 68.8

8

14.8

2

65.2

5

16.4

0

52.0

8

17.9

9

53.6

3

20.0

0

Total Anxiety &

Depression

69.0

6

14.6

3

67.1

3

14.7

1

53.5

4

18.7

5

53.8

8

20.2

5

Note: The “All Available” sample includes young people for whom at least one measure was available. The “Complete” sample includes young people for whom matched admission and discharge measures were available. The graphs in the main sections of the report are based on the “All Available” sample. Statistical tests based


37

on complete samples. Table 6: Demographic variables

Demographic Number %

Length of History

- Less than 6 Months 6 19

- 6 - 12 Months 1 3

- 1 – 2 Years 13 42

- More than 2 Years 11 36

Prior Treatment

- Adult Psychiatric Ward 1 3

- Inpatient CAMHS Unit 8 26

- Pediatric Ward 3 10

- Specialist Eating Disorder Inpatient Unit

1 3

- Outpatient Community CAMHS

31 100

Carer Type

- Both Biological Parents 18 58

- Biological father with father’s partner

0 0

- Biological mother with mother’s partner

6 19

- Single Parent 6 19

- Adoptive Parents 1 3

Education Type

- Mainstream Secondary School

24 77

- Further or Higher Education

5 16

- LEA Special Needs Day School

1 3

- No Education 1 3

Parent/Carer with a Psychiatric Diagnosis

21 68


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A Word of Caution on Routine Data and its Interpretation In this section, we would like to draw attention to some of the challenges involved in routine outcome measurement, and to the reasons why the reader is invited to interpret the data with caution. We would also like to explain the benefits that outcome measurement can offer for evaluating and improving the care we provide. Among the factors that have impacted our data collection are brief admissions, unplanned discharges, and low return rates of questionnaires. These are challenges faced by most, if not all, CAMHS services in the implementation of routine outcome measurement [8; 9; 10; 11]. As a result, the data we have presented and analysed may be under-representative of the young people who received treatment at the Darwin Centre during the year. In fact, those who completed the measures may present with different characteristics from those who did not complete the measures [13]. Interestingly, other services that are also implementing routine outcome monitoring (e.g., Children and Young People’s IAPT) have decided to only report outcomes at service level if 90% of cases have complete data (i.e. pre- and post-treatment; [12]). Analysis of routine outcome measures is further confounded by other biases, such as differences in young people’s characteristics at admission and lack of a comparison group. Being able to look at services’ outcomes and interpret them in a way that can directly inform and improve clinical care is the ultimate goal of routine data collection, but the kind of careful analyses it requires is still under development [12; 13]. We would rather encourage readers to take a critical perspective that acknowledges the complexities and uncertainties of the data [13]. At present, we feel that the real benefit that outcome measurement can bring is in clinical practice, i.e. for guiding treatment, supporting the team to reflect on the care they provide, encouraging multiple perspectives and actively seeking young people’s views on their difficulties and achievements. When used meaningfully in these ways, outcome measures can foster engagement and help provide a more person-centered approach to treatment [12; 11]. These are all goals that our service is aiming towards.


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…………………………………………………………………..…….. Leaflet published: October 2019

Patient Advice and Liaison Service

For information about CPFT services or to raise an issue, contact the Patient Advice and Liaison Service (PALS) on Freephone 0800 376 0775, or e-mail [email protected]

Out-of-hours service for CPFT mental health service users Please call NHS 111 for health advice and support. If you require this information in another format such as braille, large print or another language, please let us know.

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