pilot project report
TRANSCRIPT
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Improving The Quality and Uptake of Annual Health
Checks for People with Intellectual Disability(Learning Disabilities) in Leeds.
A pilot project commissioned by Leeds North CCG
Sheila Truran Learning Disability Community NurseLYPFT
Janet Tsiga Learning Disability Community NurseLYPFT
Norman Campbell Commissioning Manager Learning Disability and AutismLeeds CCGs
Dr Peter Lindsay Aireborough Family Practice, RCGP Intellectual Disability Professional
Network Group.
6th
December 2013
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Contents Page
Foreword 3
Executive Summary 4
Background 5
Project Proposal 6
Project Initiation 6
Selection of Practices
Project Implementation
Description of practices 7
Training Session
Pre-Pilot Questionnaire
Process: 8
Creating a register.
-Practice A
-Practice B
-Practice C
What Helped with further searches
Challenges in creating a register
Health Check Template 12
Hand held recordsMedical records
- Practice A
- Practice B
- Practice C
Initiation & Process of Health Checks 13
Process & Reasonable adjustments identified
-Practice A
-Practice B
-Practice C
Project EvaluationPost project questionnaire 16
Recommendations 18
Next Steps 20
References & Reading List 21-22
Appendices 23-26
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ForewordSociety becomes more wholesome, more serene, and spiritually healthier, if it knows that
its citizens have at the back of their consciousness the knowledge that not only themselves,
but all their fellows, have access to the best that medical skill can provide. (1)
The NHS, the texture of our national life (1) is founded on the principle of universal care
offered to all. When the long stay hospitals, founded to home adults with intellectual
disability, were closed it had to adapt to the special needs of those adults who were newly
finding their places in our communities. There was initial confusion as to who was
responsible for giving that care. Valuing People(2) presented to primary care the
responsibility of creating registers for them. Driven by the recording of a 58% mortality rate
in this minority population(3) with known risk factors and the conscious indictment of
Death by Indifference(4)), Health for All(5) laid upon the entire NHS the responsibility of
making reasonable adjustment to their needs and stressed the value of offering annual
health checks to all adults with intellectual disability. This resulted in 53% of those patients
having had an annual health check nationally and slightly more in Leeds by 2013.
This figure of just over half needs us all to reflect. Annual health checks offered to
populations of adults with intellectual disability result in a 9% positive pick up rate of
significant morbidity. If the same check is repeated on the same population the following
year the pickup rate increase to 16%. (6)There is no other health screening, no other
screening, no other population-based health activity which offers such effectiveness.
Janet and Sheila lead this pilot project, going in to practices to encourage them to offer
annual health checks to all their practice populations of adults with intellectual disability.
What they found is fascinatingthe goodwill, the understanding, the desire was there in allthe practices it was the mundane problems of creating the register and recording the
outcomes that posed most problems. This report offers simple solutions to these problems
for all practices and lifts the final obstacles facing those 47% of practices not making special
adjustment to this high risk, high mortality, high morbidity, high QOF point generating,
population. Their work, in limited time and with limited resources, is a beacon of light of
hope, of equalitya light showing us a health service still based on total inclusiveness and
justice for all. All General Practitioners will welcome it because we all recognise the value of
every individual and the need to ensure our care is offered universally by us adapting our
services to the needs of all at all stages of life. By learning to adapt to the needs of adults
with intellectual disability we learn to care for all.To enter into the previously closed world of adults with intellectual disability, to remove
from them those fears and dread which began in imposed social isolation and was
perpetuated by systems of care not prepared for their special needs, to offer them a share
in the benefits of recent progress and understanding of medical skill we must be the best
NHS we are capable of being. Who will benefit? We all will.
Peter Lindsay
Aireborough Family Practice
RCGP Curriculum Guardian for Care of the Adult with Intellectual Disability Member of
RCGP Intellectual Disability Professional Network
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Executive Summary
Successive national reports have highlighted that people with learning disabilities
experience worse health and are more likely to die younger and from treatable conditionsthan the general population. The small scale project was commissioned to;
assess how the uptake and quality of annual health checks for people with learning
disabilities could be improved
investigate how learning disability community nurses could support general practice
in the provision of health checks
Analysis of the findings identifies barriers to successful health checks through a lack of
standardisation in the use of Read codes and the subsequent effect on practice registers,
the availability of an appropriate e-template on which to record the health check, and a lack
of understanding or use of reasonable adjustments.
The project whilst small in scale has highlighted issues arising in general practices that
adversely affect the implementation of health checks. Additionally the project has also
demonstrated how the knowledge and skills of the community learning disability nurse
working in partnership with general practices can support the successful implementation of
the annual health check.
The project has identified several issues that commissioners require to address if the health
needs of people with learning disabilities are to be adequately met. The first step will be to
commission learning disability Primary Care Liaison Nurses to support general practices
across all three CCGs 2014.
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Background
It has been widely reported that life expectancy for people with learning disabilities is less
than for the general population and that they suffer considerable morbidity as a result of
physical impairments, medical problems and mental health problems.People with learning disabilities are:
58 times more likely to die before 50 than the general population
5 times more likely to have SUDEP (Sudden Unexplained Death in Epilepsy)
4 times more likely to have preventable cause of death
3 times more likely to die from respiratory disease the most common cause of death
People with learning disability also have lower rates of uptake for health promotion and
screening programmes. Compared to the general population, people with learning
disabilities and diabetes have fewer measurements of their BMI. Those who have had a
stroke have fewer blood pressure checks. Cervical screening and mammography are less
likely to be undertaken. Healthcare for All (2008)Following the launch of Valuing People in 2002 health inequalities for people with learning
disabilities and the need for health action plans and health facilitation has been highlighted
in numerous reports, most notably, Six Lives (2009) and Death by Indifference (2006).
Identification of people with learning disability in primary care is therefore an important
prerequisite to improving access and to preventative strategies such as health checks (Eric
Emerson et al. 2008)
Following a formal investigation into the health inequalities experienced by people with
learning disabilities, the Disability Rights Commission in (2006) recommended the
introduction of annual health checks for people with learning disabilities as a reasonable
adjustment in primary health care services.
In February 2009 guidelines were published by the Department of Health that required PCTs
(Primary Care Trusts) to offer GP practices in their area the opportunity to provide health
checks for people with learning disabilities as part of a DES (Directed Enhanced Service)
scheme. The DES was designed to incentivise practices to identify learning disability patients
aged 18 or over with the most complex needs and offer them an annual health check. In
addition the DES stated that the local authority should share information with GP practices
to check against practice QOF registers and ensure all eligible for a health check were
identified.
The Quality and Outcomes Framework (QOF) was introduced in 2004 as part of the General
Medical Services Contract. QOF is a voluntary incentive scheme for GP practices. Practices
are required to keep (QOF) registers for conditions such as learning disability, asthma and
coronary heart disease.
The implementation of annual health checks for people with learning disabilities in England
has been repeatedly recommended over the past five years as one component of health
policy responses to improve the health of people with learning disabilities. The underlying
rationale for the use of health checks is that
Primary care services tend to be reactive, responding to problems raised by
patients.
People with learning disabilities may be unaware of the medical implications of
symptoms they experience, have difficulty communicating their symptoms or
may be less likely to report them to medical staff.
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Carers may not always attribute the manifestations of clinical symptoms to
physical or mental health.
As a result, health checks provide a way to detect, treat and prevent new health conditions
in this population. It has also been argued that health checks can help provide baseline
information against which changes in health status can be monitored.
An equivalent Australian study has shown that Comprehensive Health Assessment Program
(CHAP) designed to address healthcare needs, many of which are often overlooked in this
population, has shown to improve the health of people with intellectual disability, (JIDR
2013).
The Annual Learning Disability Health Self-Assessment Framework (HSAF) has been
implemented nationally for two years and in the Yorkshire and Humberside region for 5
years in total. It has from 2013 become a joint health and social care assessment led by
IHAL, (Improving Health and Lives learning disability public health observatory), on behalf of
NHS England & ADASS. One of the key priorities for Leeds has been to improve the uptake
and quality of health checks for people living in the city.
Project Proposal
The proposal identified a collaborative approach between Leeds CCGs and Leeds & York
Partnerships Foundation NHS Learning Disability Service (LYPFT) to provide a practical
resource for the project.
All general practices in Leeds were contacted by the CCG learning disabilities commissioner
to inform them about the project and request expressions of interest. Following this, work
was undertaken with LYPFT to recruit two nurses from the community learning disability
team (CLDT) to provide support to 2-3 general practices, (one practice from each locality). It
was envisaged that the nurses would work with the GP practices 2 days per week over a 6
month period to:
Undertake a baseline assessment via a pre-project questionnaire and post project
questionnaire to agree outcomes with practices and measure outcomes.
assist the on-going implementation of the DES learning disability health check
Identify obstacles and barriers facing practice staff, and to provide expert
knowledge, advice and guidance to overcome these barriers and improve the
uptake, quality and experience of the health check for patients particularly those
with complex needs.
To provide expert knowledge, advice and guidance to overcome these barriers and
improve the uptake, quality and experience of the health checks for people,
particularly those with complex needs.
Project Initiation
Selection of practices
Of the GP practices in Leeds 27% had not undertaken the DES (Directed Enhanced Service),health check. It was queried whether these practices should be targeted by the project and
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agreed that practices with a bigger population of patients with intellectual disability should
be within the projects remit,and the practices who had not offered an annual health check
should also be included in the project.
Clinical leads were contacted in each CCG to inform them of the project. A current list of
practices, numbers registered and in receipt of health checks was obtained. Following the
collation of this data, it was agreed that practices would be identified, one in each CCG. 13
practices responded to the expression of interest in the project, and from this one practice
in each CCG was identified. Two of the three practices had not offered any annual health
checks.
Project Implementation
Description of practices
Practice A:A small family practice in an affluent area of Leeds, with a practice population of 6,100.
Staff who work in this surgery are very knowledgeable of their population as well as services
within the catchment area. This practice uses EMIS Web. Annual health checks have not yet
been completed.
Practice B:
Set in a semi-rural area of Leeds with a practice population of 10,000. There are two small
surgeries within the practice. The main surgery has disabled access. The practice uses
SystemOne. Annual health checks have not yet been completed.
Practice C:
A practice consisting of two large and busy surgeries, with a population of 23,700. The
practice uses EMIS LV. Prior to the commencement of this project, Practice C had offered
health checks to all the people on the QOF (Quality Outcome Framework) register between
September 2011 and May 2013. Invitation letters and a copy of My yearly Health Check
were sent out in batches asking the person to book a health check with the GP. The booklet
is completed and taken to the practice a week prior to the appointment. A computer
template is used to record the information discussed during the health check. If further
tests such as a blood test are needed, the doctor will request these and the booklet will
then be returned to the person.
Training session
A presentation entitled: Specialist training in primary care Making reasonable adjustment
for the adult with intellectual disability in primary medical care was delivered to the
selected practices by Dr Peter Lindsay. Representatives from each practice comprising of a
practice lead preferably a GP, practice manager and practice nurse were invited for the
training session which highlighted the following areas:
Education and development
Benefits from the project
Practice credits for GPs and Prep for nurses.
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The training session included;
Defining intellectual disability
The IQ scale from mild intellectual disability to profound intellectual disability. What
is NOT intellectual disability
Communication barriers
Epidemiology
Why care for this client group is so essential
Diagnostic overshadowing
How to make a register
Pre-Pilot questionnaire
A pre-pilot questionnaire was used as a tool to collate baseline practice information. This
included;Number of people on their QOF register
Number of people who had been offered an Annual Health Check (AHC)
The professional who completed the Annual Health Check
The template used if any
Awareness of the role of the community learning disability team
Practice
Number
on QOF
register
Number
offered an
AHC
Number
taken an
AHC
Health check
completed by
Template
used
Awareness
of the CLDT
A 20 None None ---------- None YesB 21 None None ---------- None Yes
C 110 110 78 GP/nurse/HCA yes Yes
Table 1
Process
Creating a register
Both the QOF and DES require each practice to maintain a register of people with moderate
to severe learning disability; the DES requires practices to offer an Annual Health Checkusing an agreed template such as the Cardiff Health Check. However, some people on the
QOF register may not be eligible for the DES.
The initial focus was on the QOF register for each practice. Inclusion criteria for the QOF
register are:
People with a learning disability over the age of 18,
People who live in accommodation specifically for people with a learning disability
People with Downs Syndrome.
Following discussion with the Local Authorities Caldecott Guardian in the previous year, the
Local Authority decided not to share data as per the previous ISA (information sharing
agreement) to practices without an individual request from each practice. Previous sharingof information did not improve on the data already held by practices across the city.
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Practices did not liaise with the local authority to validate their QOF register. Leeds does
not have a learning disability register or a named person to validate the register as some
local authorities do.
Further searches of the practice population were necessary to develop a comprehensive
register.
Practice A
The practice catchment area has two residential establishments for people with a learning
disability and several people who live with family or independently. The practice had 20
people on the QOF register. A further 2 people were identified following searches of the
practice population and by using the expert knowledge of the practice staff and community
nurses.
Practice B
The practice catchment area includes a large residential service and several supported living
services. The practice initially had 20 people on the QOF register. Following searches of thepractice population, a further 13 people were identified.
Practice C
The practice catchment area includes several supported living services and people who lived
independently or with the family.
The practice had 110 people on the QOF register. Searches revealed that 6 of these people
were no longer registered at the practice and identified a further 19 people to be included
on the register.
Table 2
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What helped with further searches?
Interviews
As part of the project, practice mangers, receptionists and practice nurses were asked to
help identify patients who were not on their register. Almost all patients known to the
practice were on the register. One of the practices with a smaller catchment area had a
good awareness and recollection of services and individuals living either independently or
with older carers.
Knowledge of service providers
As part of the pilot project, community nurses mapped out service providers within the
practice area. Some services in practice B and C catchment areas had been re-
commissioned with people moving from large hostels to flats. Some of these people had not
been included on the QOF register. In all of the practices, some people who were known to
the CLDT were not on the QOF register.
Challenges in creating a register
Developing a comprehensive register of people with a learning disability met with several
challenges. All three surgeries used a different computer system. These were;
EMIS LV
EMIS Web
SystemOne
Read codes are used for the clinical coding of patient conditions such as diagnoses,
occupation, social circumstances, ethnicity and religion and clinical signs and symptoms.
However Read code usage varies, they are not used consistently across different practicesor the computer systems. For example there are 3 Read Codes for Downs syndrome and 4
for giving an injection not including the type of injection given.
Coding used for learning disability also varied. (Table 3) These codes capture every condition
from severe learning disabilities to ADHD and dyslexia and will require further checking of
medical records to ensure correct inclusion on the QOF register.
Description Read Codes
Learning Disability E4JD
Learning Difficulties 13Z4EMental Retardation E3 or Eu7
Mental Handicap Problem 6664
Developmental Disorder Scholastic Skills EU81z
Problems with Learning ZV400
Table 3
Specific Read code searches that pick up the main code and all related codes are very useful
but not all systems are able to do this and full comprehensive searches need to be built. As
an example a person on the QOF register was not found in searches for autism. Although he
was coded with childhood autism, this was not picked up in the search.
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Searching each system varied; EMIS LV is an older system and assistance was needed from
the surgery IT support to create a comprehensive search. Address searches were not always
helpful. They did help for larger residential homes; however recent changes in adult social
care accommodation affected these searches. Large residential hostels have closed and
people have moved to smaller houses or flats. Address searches will only pick up people
who live at the same postal address. Post code searches were the key to identifying people
living in smaller units. (Table 4)
Searches were completed using criteria such as epilepsy, autism and cerebral palsy. These
searches identified everyone registered at the practice with the relevant Read codes.
Extensive filtering was then required to identify the people who had a learning disability.
This involved searching the personsmedical records for any record of contact with learning
disability services during the past 7 years.
Table 4
The specialist knowledge of practice staff and community learning disability nurses assisted
greatly with the further searches. The staff at Practice A had a very good knowledge of their
local population and the services in their catchment area. This helped to identify eligible
people.
Community learning disability nurses have knowledge and awareness of the services across
the city, particularly the residential and supported living services, schools and respite
services for children (useful for those coming up to their 18th birthday) and of the service
provided by the community learning disability team and adult social care. This greatly
assisted the searches, particularly if it was necessary to look into medical records to confirm
involvement with learning disability services.
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The process of developing a register could be summed up by using a 4 step approach
(appendix 4) developed by Dr Lindsay and summarised below. (Table 5)
4 step approach to developing a QOF register
Step 1 People living in LD accommodation, those with LD specific syndromes such as
Downs, Fragile X, Prada-Willi, Anglemans, Edwards, Cri-Du-Chat
Step 2 Computer based searches using read codes and syndromes not always
associated with LD. Contact with LD specific services
Step 3 Using specialist knowledge of practice staff, community nurses and CLDT teams
Step 4 On-going action to update register and yearly review of register
Table 5
Health Check Templates
Hand Held Records
The My Yearly Health Check booklet was developed and launched in Leeds in 2009, and
can help the person with a learning disability and Health Facilitator to explore health issues
and what is important to them before they attend their GP appointment. The booklet is an
easy to read, symbolised assessment that covers all areas of health. The booklet can be
taken to the persons Annual Health Check appointment and will provide the GP or Practice
Nurse with the information they need to provide a health check. Any health needs
identified can then form the basis of the persons Health Action Plan. This booklet can bedownloaded from, Your Health Matters Leeds and York Partnership Foundation Trust
(http://www.leedspft.nhs.uk/our_services/ld/Your_Health_Matters)
Medical Records
Once the health check information has been identified in the hand held records and
discussed at the health check, it raised the question of how to record and store the
information in the medical records. As stated previously, all three practices used different
computer systems. Each system makes extensive use of templates that record appropriate
health information. There are templates for the NHS Health Check, coronary heart disease,diabetes and asthma reviews. There is not a standard template for an Annual health check.
http://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Matters -
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The need for a computer template was identified and the search to either identify or create
a template was required.
Following the development of paper templates that were initially trialled during health
checks, two e-templates were found for EMIS web and SystmOne and were shared with the
practices.
Practice A
Practice A now has an EMIS web e-template which is yet to be trialled. It involved extensive
discussions and searches before this e-template could be uploaded to their system. Health
checks will now be completed using this template.
Practice B
An attempt to develop a template was trialled which incorporated aspects of the Cardiff
Health Check and from My Yearly Health Check. A paper copy was used with the plan to
upload on to their system. This was later abandoned as they linked with another practice
on SystemOne who already had an e-template. Completed annual health checks and healthaction plans will be transferred to the e-template.
Practice C
Practice C use a template for EMIS LV to record annual health checks, however, on the 17th
of October they were moving to EMIS web, and would need to upgrade their template.
Initiation and Process of Health Checks
Process and reasonable adjustments identified
Community nurses undertook specific observations at the start of the pilot project, being
present in surgeries at peak times and at less busy times. It was observed that peak times
would not be appropriate for people to access the surgery for a health check. Reception
staff were constantly engaged with the flow of in-coming telephone calls, enquiries and
attending to patients. Following discussions with the reception staff it became obvious that
if a quiet room was made available for a person with learning disabilities, there was a high
possibility of the person being missed or forgotten if they were out of sight. Quieter times
were agreed to be the best times to arrange any health check such as mid-morning or early
afternoon.
Practice C was the only practice to have offered health checks prior to the project, and a
computer template was used to record the information. Staff at the practice showed a
general understanding of annual health checks. A member of the administration team was
responsible for sending out invite letters and My Yearly health check booklet to selected
people. Invites were sent out in batches throughout the year. For the period between
September 2011 and May 2013, 75% of people had responded and attended for a health
check. The practice was providing the My yearly health checks booklet which was
completed by carers and brought to the practice a week prior to the annual check. This
process was beneficial because;
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It allowed time for the GP/nurse/health carer to familiarise themselves with the
health needs of the client and therefore planning beforehand and deciding when and
how a clients health check would be completed.
It reduced the consultation time considerably
It provided appropriate discussion points during the health check
Practice C had trialled various methods of offering health checks, specific clinics were not
successful, people could not attend on a certain day because of previous engagements or
activities. It was felt better to send invite letters and allow the person to book an
appointment at a time convenient to them. Practice C found that often people were
supported by someone who did not know them very well and therefore the quality of
information discussed was poor.
Liaison with support services and carers.
Visits were arranged with services within each practices catchment area. Most of the
services were aware of the My Yearly Health Checkbooklet however usage of the booklet
varied. Some services used it as a diary or a record of the persons health status, updating it
every year or using it to track health changes which were then discussed with the GP. The
Health Action Plan at the back of the booklet was not used. Family carers were not always
aware of the booklet and did not know where to get a copy from. Both family and service
providers were made aware of how to obtain a copy of the booklet.
Service providers were eager to ensure their service users accessed health checks and were
happy to complete health check information with each person they supported.
Invitation lettersThe invitation letter used by Practice C was wordy and not easily understood. This was
brought to the awareness of the practice and an easy read invitation letter designed by
Community Nurses and was shared with the practice. (Appendix 1)
Health Action Plan
Practice C captured outcomes from the health checks within their medical records; the
person did not always have a documented record of their health check. Family carers and
paid carers did not always understand what a health action plan entailed. Example health
action plans were developed and later used following health checks. (Appendices 2 & 3)
Practice A
Practice A wanted an e-template to record the health check information; they agreed to use
paper templates in the interim. The paper template had been developed by practice B as an
interim measure during development of the e-template. The paper template proved
effective in gathering all the required information.
A person was identified and an appointment arranged for the health check, the support
service were asked to complete the My Yearly Health Checkprior to the appointment and
were asked that someone who knew the person well would assist them to attend along with
a community nurse.
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It appeared there was no forward planning on who was completing the check, or identifying
which part of the heath check was to be completed by either the nurse or the GP. The
person was seen first by theGP and then by the nurse. This was discussed at the end of the
consultation and better planning for future health checks would be done.
Carers brought in an uncompleted My yearly health check. The carer was not the
keyworker so they could not adequately contribute to the health check resulting in gaps in
the clients medical history.
The lead GP who was keen to offer annual health checks only completed one health check,
before going on long term leave. Annual health checks were put on hold.
Practice B
Practice B was instrumental in developing a paper and electronic template. A Friday mid-
morning clinic was identified for annual health checks. Due to the inexperience of staff
completing Annual Health Checks as well as trialling a new template, it was agreed that the
community nurses should liaise with carers and identify those who were less challengingfirst to attend the health checks. The health checks were to be held at the main surgery
within the practice. This presented problems for people who usually attended the smaller
surgery, meaning people had to travel over 6 miles to access health checks. This presented
with cost implications and discussions will still be required to agree a more flexible approach
for the future.
Accessible invitation letters were sent to each person and easy read health action plans
developed following the appointment.
The paper template was developed by one of the GPs and used as a hard copy until an e-template could be developed. The template is comprehensive, incorporating components
from the Cardiff Health Check and My Yearly health check. This has so far proved to
contribute to a higher quality health check. Prominent among the checks was the detection
of unidentified health needs e.g. three people with Down syndrome had no record of
thyroid function blood tests being done. Two out of three had ear wax present and there
was no record of a full blood count having being checked.
After the health check, the patients health action plan was discussed and the outcomes
documented as appropriate. The health action plan was generated into a letter which
would be sent to the person. The summary health action plan which is part of the My Yearly
health booklet was completed for the person and handed to the carer.
Practice C
Following discussion with the practice manager and sharing of accessible invitation letters, it
was agreed that the 25% of people who had not responded would be re-invited using the
accessible letter.
Of the 25% who did not respond, 15% lived either independently, with minimal support or
with older carers. The remaining 10% lived in supported living.
A sample of 7 people was selected and contact made to try and find out the why they hadnot attended.
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Several attempts were made to contact people by telephone. Voice messages were
left where possible, none of these calls were returned.
One older carer declined a health check; she felt the health needs for her daughter
were sufficiently met. She declined any offer for a home visit to further discuss the
importance of health checks.
One older carer from an ethnic minority was happy for us to do a home visit. From
the discussions held, it was clear that there was a misunderstanding of what would
be entailed with a health check. He said he had never seen an invitation letter from
the practice.
Another older carer did not recall receiving a letter or had ever seen a copy of My
Yearly Health Check booklet. This person booked an annual health check. One of
the community nurses was present during the appointment and a health action plan
was discussed and formulated.
Evaluation
Post Project Questionnaire
At the start of the project the community nurses used a pre-project questionnaire to
identify the baseline total number of patients on the practices register(Table 6) and then
conducted a post project questionnaire which would help the community nurses to measure
the projects success(Table 7).
Pre project questionnaire
Practice
Number
on QOF
register
Number
taken an
AHC
Health check
completed by
Template
used
A 20 None ---------- None
B 21 None ---------- None
C 110 78 GP/nurse/HCA Yes
Table 6
Post Project questionnaire
Practice
Number
on QOF
register
Number
taken an
AHC
Health check
completed by
Template
used
A 22 1 GP/Nurse Yes
B 40 7 GP Yes
C 119 GP/Nurse/HCA Yes
Table 7
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The QOF registers for practice A were relatively up-to-date, only two people were found
during further searches. Practice A wanted a computer template to record the health check
information. The search for a template was lengthy and the practice felt that this delayed
them offering health checks. Unfortunately one health check was completed before being
put on hold as further detailed on page 13. Practice A found the community nurseinvolvement assisted to clarify what information should be recorded on a computer
template, and assisted with the search for a template. The practice have close links with
services in their catchment area so future nurse involvement was felt not to be necessary.
Practice Bs registers required extensive searching. The majority of the people found had
previously lived in a large adult social care hostel and had moved to smaller flats or houses.
Searches for postcode rather than postal address were most helpful in identifying these
people. Further liaison with the service verified the results of the searches. The practice was
instrumental in developing a computer template and pre-health check questionnaires. Theywere successful in obtaining a template from another practice and the attempt to create a
template was abandoned. Practice B found the support from the community nurses
valuable, particularly with the ability to liaise with services offering outreach support, and in
assisting in the health check process.
Practice Cs registers also required extensive searching, however the practice used an older
system that was due to be upgraded. Searching the older system posed many problems.
Searches were completed with support from the IT department. Extensive searching of the
QOF register was needed to establish how many people had been offered a health check
and how many had attended for a check. The surgerys use of a template greatly assisted in
this, meaning we were able to search a medical record for the template rather that search
through each individual entry. Practice C felt that community nurse involvement during an
annual health check could be very beneficial for the person and the practice.
Development of accurate registers is essential if all eligible people are to be offered health
checks and health action plans. The development of the register should be a one-off process
with yearly reviews to ensure it is up to date.
The community nurses felt the training session at the start of the project worked well. Thistraining session was offered to all practices and was attended by two out of the three
practices. The training was delivered on a Saturday morning, which is one of the reasons the
third practice could not attend, citing this as inconvenient time for the practice staff. The
invitation for the training was deemed to have come too late to organise staff at such short
notice which was a valid reason due to the tight timescales of the project initiation.
All practices were supported to offer annual health checks, and the community nurses
organised and booked time slots for patients. The community nurses offered this service to
enable the GP or practice nurse to conduct a clinic which was observed by the community
nurse to provide further advice and support on reasonable adjustments that could be made
and in addition to help formulate the health action plans.
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Of the seven health check appointments which were attended by the community nurses,
there was some commonality in outcomes;
Prominent among the checks was the detection of unidentified health needs e.g.
three people with Downs syndromehad no record of thyroid function blood tests
being done.
Three people reported pain, all were advised regarding pain relief and one was
referred for further investigations
Three people had ear wax present
Five people did not have a record of full blood count
Routine screening and health promotion discussed (diet and lifestyle advice,
seasonal flu injections, mammograms)
Two people did not remember when they had gone for a dental check-up and were
referred as appropriate.
Three of the paid carers supporting the person knew very little or could not provide
information requested by the GP.
Reasonable adjustments
As demonstrated in the report the community nurses offered advice and support in the area
of reasonable adjustments. The following points were found to be beneficial in improving
the uptake and experience of health checks.
Easy read invitation letters
Easy read health action plans
Flexibility to book an appointment at quieter times such as mid-morning or early
afternoon. This was also evidenced by the post questionnaire response from one
practice that reasonable adjustments around access enabled people with learning
disability to access health care.
Ensuring that the person is accompanied by someone who knows them well
Involvement of community nurses as required by the person or the practice.
Recommendations
1. Reasonable adjustments
Easy read invitation letters and health action plans are particularly useful for people who
live independently or with older carers.
Quieter times of the surgery, such as mid-morning or early afternoon are best times for
arranging a health check. An initial health check can take between 15 and 45 minutes
depending on the person and the complexity of needs. Subsequent appointments will take a
shorter time to complete.
My Annual Health Checkbooklet is easily available for services and people with internet
access. A practice could identify people who are unlikely to access a copy and offer a copy of
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the booklet. A copy of the booklet can be obtained from: Mencap: Through the Maze, or
downloaded fromwww.leedspft.nhs.uk/our_services/ld/Your_Health_Matters
2. Practice registers
It is recommended that the practice register to be updated on a yearly basis (Appendix 4).An agreed consistent Read code for intellectual disability should be used.
They lengthy process of identifying patients in the practice population should be a one-off
exercise. Subsequent additions to the register may then be assessed during registration of
new patients, and identification of rising 18 year olds. The assessment for intellectual
disability should be included in the patients electronic record for any subsequent new
patients:
The system should be able to identify those who have turned 18 and coming into
adult services.
Identify those who have died who may remain on the register.Identify those who have relocated
Liaison with Community Learning Disability Teams can assist in identifying changes in
or restructuring of services and inform of any demographic changes.
GP practices and Health Facilitators need access to local authorities to share information as
appropriate, to enable accurate figures for practice registers and to enable practices to
validate their registers.
3. Partnership working
During the project close working relationships were developed between the practice and
the community nurses. This proved effective in the development of comprehensiveregisters and identifying eligible people for inclusion on the QOF register. Data protection
policies and or confidentiality issues limited searches.
There is need for a multi-targeted approach to identifying patients with learning disability as
well as a consistent definition of learning disability
4. Health Facilitation
Community nurses took a health facilitation role. This included liaising between carers,
families and GPs to raise awareness of health checks and health action planning, and also
promotion of the health check and developing health action plans to people with a learning
disability and carers. There is a role for learning disability nurses to support GP practices to
identify patients with intellectual disabilities, reviewing the register and to facilitate
improved access to mainstream health services for people with learning disabilities.
5. Read Codes
An agreed, consistent Read code for intellectual disability should be used. Standardised use
of Read codes across the Clinical Commissioning Groups will ensure patients with
intellectual disabilities are not lost in the system as they relocate from one area to the
other.
6. Health action plans
It is of fundamental importance that health needs or outcomes of an annual health check
are captured on individual health plans. (See appendix 2 and 3 for examples of health action
http://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Mattershttp://www.leedspft.nhs.uk/our_services/ld/Your_Health_Matters -
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plans). Easy read plans are essential to assist understanding of health needs particularly for
people who live independently, with minimal support or with older carers.
Next Steps
The project has been an important initiative to identify how the uptake and quality of the
learning disability health check can be improved in the city. It has also presented a
significant opportunity for primary and specialist health care services to work closely
together and identify how the skills of the learning disability community nurse can enhance
the service provided by G.P practices to their learning disability populations.
Following the report, the following steps will be taken;
The report will be circulated to practices city wide, and an executive summary
provided for CCG executive boards, and clinical commissioning groups.
An extract describing the project will be prepared for publishing, and the full report
disseminated nationally via the Learning Disability Health Network
To facilitate implementation of the projects recommendations, a commissioning
intent will be developed to provide a learning disability primary care liaison service in each
of the CCG areas. Leeds North CCG together with the Learning Disability City Wide G.P.
Clinical Lead and specialist learning disability health services will develop the initiative to be
implemented from April 2014
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References
Allgar V., Evans, J., Marshall, J. et al (2008) Estimated prevalence of people with learning
disabilities. British Journal of General Practice, June 2008.
Bevan A. (1952) In place of fear. A free health service 1952
Heslop P. et al (2013) Confidential Inquiry Into Premature Deaths of People with Learning
Disabilities (CIPOLD)
Lennox et al. (2013) General practitioners views on perceived and actual gains, benefits and
barriers associated with the implementation of an Australian health assessment for peoplewith intellectual disability. Journal of Intellectual Disability Research. Journal of Intellectual
disability Research, Vol. 57, pp 913-921
Mencap (2006) Death by Indifference Report about institutional discrimination within the
NHS, and people with a learning disability getting poor healthcare.
www.mencap.org.uk/document.asp?id=284
Michael J. (2009) Healthcare for All, Report of the Independent Inquiry into Access to
Healthcare for People with Learning Disabilities.
Robertson J. et al (2011) The impact of health checks for people with intellectual disabilities:
a systematic review of evidence.Journal of Intellectual Disability Research 55(11):1009-19.
Valuing People (2009) A new Three-Year Strategy for people with learning disabilities.
Making it happen for everyone
Reading List
http://www.mencap.org.uk/document.asp?id=284http://cirrie.buffalo.edu/database/journals/315/http://cirrie.buffalo.edu/database/journals/315/http://cirrie.buffalo.edu/database/journals/315/http://www.mencap.org.uk/document.asp?id=284 -
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Report: Commissioning of Learning Disabilities Services (October 2011) Dr Simon Hulme,
Clinical Lead Learning Disabilities Leeds West C.C.G.
www.oxleas.nhs.uk/gps-referrers/learning-disability-services/health-check-resources/
Steps for primary care staff to complete LD checks
Recommended read codes to support health action plans for people with a learning
disabilities. Teesside Primary care informatics
Mansell J (2010) raising our sights: services for adults with profound intellectual and
multiple disabilities
Mansell J (2007) Services for People with Learning Disabilities and Challenging Behaviour or
Mental Health Needs. Department of Health
Six Lives: the provision of public services to people with learning disabilities (2009) Local
Government Ombudsman, Parliamentary and Health Service Ombudsman
A Life like Any Other? Human Rights of Adults with Learning Disabilities House of Lords /
House of Commons Joint Committee on Human Rights (2008) House of Commons
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Appendix 1: Accessible Invitation Letter
Appendices
Name
Address
Dear.
Thank you
You are invited for an Annual Health
Check
Name and Address of surgery
Phone you Doctor and ask for a
double appointment for an Annual
Health Check
Fill in your My Yearly Health Check
booklet
Bring the booklet to the appointment
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Appendix 2: Example Health Action Plan 1
People involved in care and support
Profession Name Contact details
Psychiatrist
Community Nurse
Neurologist
Dentist
Health Need Health Action Who will do
this
By when
Mary described
pain in her left
shoulder
Prescribed Algesal cream
Rub the cream onto the
shoulder area Mary Every day
Mary has epilepsy.
Mary has 2-3 seizures a year
Mary had blood tests to monitor
medication levels in May 2013
Mary, Mum
and GP
Repeat blood tests
in May 2014
Name and address of surgery
Name, address, carer details of person
Heath Action Plan
Date
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Appendix 3: Example Health Action Plan 2
From My Yearly Health Checkbooklet
Health Issue Action Needed Who will do it? Review Date
Julie has epilepsy.
Julie has 2-3 seizures
a year
Julie had blood tests
to monitor
medication levels in
May 2013
Julie, support team
and GP
Repeat blood tests in
May 2014
Julie has Downs
syndrome
Julies thyroid
function tests
completed July 2013
Julie,
support team
GP
Repeat blood tests in
July 2014
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Appendix 4: 4 step approach to developing comprehensive register
Stage 1
Those living in accommodation provided specifically for adults with intellectual
disability
Downs Syndrome Fragile X, Angelman, Cri-Du-Chat, Prader-Willi, Edwards
syndromes, the problem here being that most patients with these syndromes other
than those with Downs Syndrome and Fragile X die before adulthood
Stage 2: Computer search based on GSI-GSO (Good stuff in good stuff out)
Cerebral Palsy (but not all patients have intellectual disability)
Coded as mental retardation, mental handicap, developmental delay, learning
disability
Autism
Attended clinic of psychiatrist for intellectual disability
Communication from intellectual disability team
Attended school for children with intellectual disability
Stage 3: Total Practice Involvement
Practice staff
Attached staff
Local Social Services Department
Speciality, and Community LD Nurses
DWPfrom their correspondence
Anyone else!!!!!
Stage 4: On-going action
All members of staff and clinicians dealing with incoming post from allied agencies are
asked to bring to the attention of the lead clinician any comments regarding intellectual
disability and the conditions listed above. The diagnostician must have used direct language
in the diagnosis of a learning disability; avoiding such terms as "appears", "suggests" or "is
indicative of" as these statements do not support a conclusive diagnosis. The evaluation
must be performed by a professional diagnostician (i.e. licensed clinical psychologist,
rehabilitation psychologist, learning disability diagnostician, etc.) trained in the assessment
of learning disabilities. Information will be displayed in the waiting room offering annual
health checks and inviting suggestions from carers and family members.
Justifying the register
If there is a dispute with commissioners about whether a patient should or should not be on
the register a simple rule of thumb would be to show that the patient had made use of
social, educational or health services within the last seven years.
Benefits
Offer of an annual "Health review" to all those who would benefit from it
GP and staff training
Improved service to patients with intellectual disability, e.g. by allowing automatic
extra time for appointments (if required), annual health checks etc.
To develop reference materials for clinicians, staff and patients
Thanks to Dr P Lindsay and Ms Fleur Waite, Aireborough Family Practice