Pilot Project Report

8/13/2019 Pilot Project Report

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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
http://www.easyonthei.nhs.uk/all-symbols-outside-the-box/phone-outside-the-box


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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

Documents

Pilot Project Report