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 Nurse LYPFT Janet Tsiga Learning Disability Community Nurse LYPFT Norman Campbell Commissioning Manager Learning Disability and Autism Leeds CCGs Dr Peter Lindsay Aireborough Family Practice, RCGP Intellectual Disability Professional Network Group. 6th December 2013

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Contents
Foreword Executive Summary Background Project Proposal Project Initiation
Selection of Practices

Page
3 4 5 6 6

Project Implementation
Description of practices Training Session Pre-Pilot Questionnaire 7

Process:
Creating a register. -Practice A -Practice B -Practice C What Helped with further searches Challenges in creating a register

Health Check Template

Hand held records Medical records - Practice A - Practice B - Practice C

12

Initiation & Process of Health Checks

Process & Reasonable adjustments identified -Practice A -Practice B -Practice C

13

Project Evaluation
Post project questionnaire

Recommendations Next Steps References & Reading List Appendices

16 18 20 21-22 23-26

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Foreword
Society 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 respon sibility 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 fascinating the goodwill, the understanding, the desire was there in all the 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 equality a 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 conditions than 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 Number on QOF register 20 21 110 Number Number Health check offered an taken an completed by AHC AHC None None ---------None None ---------110 78 GP/nurse/HCA Template used None None yes Awareness of the CLDT Yes Yes Yes

Practice A B C 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 Check using 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 sharing of 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 the practice 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 recommissioned 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 practices or 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 Learning Disability Learning Difficulties Mental Retardation Mental Handicap Problem Developmental Disorder Scholastic Skills Problems with Learning Table 3

Read Codes E4JD 13Z4E E3 or Eu7 6664 EU81z ZV400

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 persons medical 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 Step 2 Step 3 Step 4 Table 5 People living in LD accommodation, those with LD specific syndromes such as Downs, Fragile X, Prada-Willi, Anglemans, Edwards, Cri-Du-Chat Computer based searches using read codes and syndromes not always associated with LD. Contact with LD specific services Using specialist knowledge of practice staff, community nurses and CLDT teams On-going action to update register and yearly review of register

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 be downloaded 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.
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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 health action 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 Check booklet 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 letters The 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 Check prior 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 the GP 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 midmorning 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 challenging first 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 etemplate 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 had not 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 Number on QOF register 20 21 110 Number Health check taken an completed by AHC None ---------None ---------78 GP/nurse/HCA Template used None None Yes

Practice A B C Table 6

Post Project questionnaire Number on QOF register 22 40 119 Number taken an AHC 1 7 Health check Template completed by used GP/Nurse GP GP/Nurse/HCA Yes Yes Yes

Practice A B C 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 nurse involvement 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. They were 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. This training 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 syndrome had 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 Check booklet 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 from www.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 comprehensive registers 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
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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 people with 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
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Report: Commissioning of Learning Disabilities Services (October 2011) Clinical Lead Learning Disabilities Leeds West C.C.G.

Dr Simon Hulme,

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 and Address of surgery

Name Address Dear.

You are invited for an Annual Health Check

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

Thank you

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Appendix 2: Example Health Action Plan 1 Name and address of surgery Name, address, carer details of person Heath Action Plan Date

Health Need

Health Action

Who will do By when this

Mary described Prescribed Algesal cream pain in her left Rub the cream onto shoulder area shoulder

the

Mary

Every day

Mary has epilepsy.

Mary has 2-3 seizures a year Mary, Mum Repeat blood tests Mary had blood tests to monitor and GP in May 2014 medication levels in May 2013

People involved in care and support Profession Name Psychiatrist Community Nurse Neurologist Dentist

Contact details

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Appendix 3: Example Health Action Plan 2 From My Yearly Health Check booklet

Health Issue

Action Needed

Who will do it?

Review Date

Julie has 2-3 seizures a year Julie has epilepsy. Julie had blood tests to monitor medication levels in May 2013 Julie has Downs syndrome Julies thyroid function tests completed July 2013 Julie, support team and GP Repeat blood tests in May 2014

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 DWP from 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 o f 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
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