Guidance

Learning Disabilities

There are around 1.4 million people with Learning Disabilities (LD) in the UK.

An average practice of 8,000 patients could expect to have about 50 – 100 patients with LDs.

The definition of a learning disability:

A significantly reduced ability to understand new or complex information to learn new skills (significantly impaired intelligence) AND a reduced ability to cope independently (impaired social/adaptive functioning) AND which started before adulthood (onset before aged 18) with a lasting effect on development.

It is well recognised that people with LD have poorer outcomes.  Health inequality remains a leading concern with people with LD dying on average 15-20 years sooner than the general population and experiencing poorer health.  The mean age of death of people with profound or multiple LD is 40 years old.  Unfortunately, often this is not due to complex co-morbidities but due to preventable, treatable conditions.  A concern recently identified in the LeDeR 2018 review is the identification of “diagnostic over-shadowing” or misreading symptoms of illness as being due to person having learning disability rather than a treatable medical condition (see here).

Primary care is well situated to help improve these figures by supporting patients more proactively.  The information in this booklet sets out how to arrange the annual health check and how your surgery might implement it in a straightforward way, along with useful resources for professionals, patients and carers.  It is important to mention that you need to consider the mental capacity of patients with Learning Disability as this will vary on an individual basis.  For more information on mental capacity visit our webpage: Wessex LMCs: Mental Capacity

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The Learning Disability Annual Health Check

The Annual Health Check (AHC) is a holistic view of our patients and a recognised, evidenced method of improving the health of individuals with LD.  The national Directed Enhanced Service (DES) for Learning Disabilities Health Check Scheme was designed to encourage practices to identify all patients aged 14 and over with LD, to maintain a LD “health check” register and offer them an AHC, with includes producing a health action plan. NHSE advice about an annual health check for people with learning disabilities can be found here.

Benefits of the AHC for practices:

  • The annual fee for this enhanced service is currently £140 per patient per year with payments made on a quarterly basis, there are also a domain areas of QOF and the Network DES IIF that relate
  • Opportunity for long term condition and QOF areas to be reviewed
  • Opportunity for engagement with patients and their carer
  • Opportunity to gain consent for sharing of records with others, e.g. screening organisations, SCR, next of kin
  • Opportunity for advance care planning
  • Recognition of health needs earlier to help manage workload

Benefits of the AHC for patients:

  • A review of physical and mental health with an improved health experience for patients, families and carers
  • Designed to review known co-morbid chronic conditions, e.g. epilepsy, dementia, diabetes, obesity, cardiovascular disease etc.
  • An opportunity to identify a wide range of potential unmet health needs which may otherwise go unreported or unrecognised without proactive screening
  • Opportunity to develop a personalised Health Action Plan with patients and their carers which with consent can be shared with appropriate/relevant support services

The AHC interaction is also an opportunity to build relationships and foundations of continuity of care which is considered mutually beneficial.

In 2016-17 only 53% of people on a learning disability register had a health check nationally.  NHS England are aiming for 75% uptake of patients on the register by 2020 and we support this effort (and hope for higher) as it’s not too difficult to set up.

See below for a step by step guide of what to consider when setting up your process.

Learning Disability Annual Health Checks – What are the steps?

1. Identify

Consider identifying a team of consistent practice staff who are responsible for LD AHCs.  This could include a member of the reception team, a practice nurse and a GP who are the practice LD Leads.  It is useful for this core team to establish regular meetings to review progress/uptake etc.

Ensure your Learning Disabilities register is up to date on an annual basis, recognising that not all LDs are correctly coded. NHS England have a useful document Improving identification of people with a learning disability: guidance for general practice which details conditions that are associated with LD and their codes.  Anyone over the age of 14 with a LD can be offered an AHC.

Try to identify how your patient likes to be communicated with and what is appropriate for their LD, e.g. easy read letters, phone call, pictures or do they want/need their carer to lead on booking appointments?  Where applicable and with the consent of the patient involving carers and support workers can be really helpful.

2. Plan & Invite

Consider how to invite your LD patients, this will require flexibility and even an individualised approach.  If possible, base your invitation on their own communication preferences and be mindful of the language you choose; clear simple communication is key to avoid misunderstanding.

Feedback from patients is often that they may not even understand why they have been invited so consider including information about the reasons they have been invited to attend when you contact them.

If you send a text/letter requesting the patient makes an appointment, consider providing a dedicated staff member who has appropriate language, attitude and communication skills to support and enable patients with Learning Disabilities to make their appointment.

3. Schedule

Location and timing of the AHC are important considerations.

To encourage uptake, you may also wish to consider:

  • Is the patient relying on others to get them to the AHC?
  • Is the patient a carer for an older relative?
  • Does the patient “refuse to miss” their day service/work? How can this be managed?

Special considerations include where is the most suitable location to carry out the AHC, e.g. for some patients being seen in their residences may be most appropriate if a surgery appointment may be impractical.

Other considerations such as reasonable adjustments may be necessary.  This is the legal requirement under the Disability Discrimination Act (2005) and the Equality Act (2010) to ensure organisations are making services accessible for people with a disability.

This may include:

  • Longer appointments
  • Early or late appointments to avoid busy waiting rooms
  • Home visits
  • Accessible information

Usual practice is to schedule one hour for the AHC.  Some practices schedule 30 minutes with a GP and 30 minutes with a practice nurse, others provide a nurse led service with GP focusing on the medication review.  The exact template of the LD AHC is up to the practice to decide but be mindful that a flexible approach may be required as some patients with LD will not tolerate multiple professionals and longer appointments whereas others will.

However you schedule your AHCs, it is important an AHC slot is offered and it is not fitted into a routine GP/nurse appointment.  It is therefore prudent to ensure that all reception staff are aware that your practice offers LD AHCs so can book patients the appropriate slot when patients phone to book appointments.

4. Prepare & confirm

Asking the patient to complete a health questionnaire prior to attending helps identify concerns the patient, can reduce anxiety and improve the effectiveness of the consultation.  This allows time to prepare for the appointment and helps clinicians lead patient centred consultations.  It is recommended you either send this out with your confirmation of the appointment or with the invite, it is up to your practice to decide.

  • Easy read pre-health check questionnaire (can’t find one online! RCGP link broken)

Some patients may need a blood test a week before their AHC.

Ensure your clinicians identify the appropriate patients who require bloods and alert administration staff in time so that they can arrange these additional appointments, similar to other annual reviews, e.g. diabetes.  This is not appropriate for all and remember you need to take a “best interest” decision for those who may not have the capacity to consent to a blood test.  Routine tests may include FBC, U&Es, LFTs, TFTs, Glucose, Cholesterol, HbA1c and if indicated Lithium levels, anti-epileptic drug levels, Calcium and Vitamin D (especially if on anti-epileptic drugs), consider FSH if prolonged amenorrhea and CRP/PSA if indicated.

Again, remember that you may need to provide easy to read information on blood tests and be clear about how the invitation to have bloods is made.

  • Information on blood test including easy read information/videos/apps for patients and carers on blood tests see here (scroll down to table 1 and 2).

Once you have booked the appointment please consider how you remind the patient of the appointment, e.g. could a member of your LD team contact them the day before?

5. Complete

The AHC is a longer appointment with a clinician which includes asking history, taking measurements and examination.  There is now a national health check template, for the information on how to activate your clinical system’s software template click here.  The findings can be easily populated in the clinic room.  There is also a useful paper-based template which can be used if the AHC is being held remote to the practice (e.g. in residential or care setting) or you can print a blank template to act as an aide memoire – Welsh Health Check for Adults with a Learning Disability.

It is worth taking time to familiarise yourself with the patient’s background and any recent results before they attend.  Ensure you use appropriate, clear communication styles appropriate to the patient’s level of understanding.  It is useful to start with what the patients have provided as to what their current top concerns in any documentation they bring with them.

There are NHS England national electronic templates to help complete the assessment which highlight useful prompts to help understand the process:  https://www.england.nhs.uk/wp-content/uploads/2017/05/nat-elec-health-check-ld-clinical-template.pdf

If appropriate, the AHC is another opportunity to have discussions and help fill in other documents that may be helpful for patients and their carers.  It may be an opportunity to initiate discussions about future planning or to fill in advance care wishes so that a patient’s wishes are known in the event of an emergency.

An example of this is www.futureplanning.org.uk/nextstep

  • “my wishes” document that can help facilitate discussion around advance care planning
  • Emergency Health Grabsheet
  • The hospital passport leaflet is a very useful way to share individual’s preferences and information particularly when they see clinicians that do not know them well.  Patients and carers can pre-populate it, discuss at the AHC and then it becomes a useful handheld record.

At the end of the AHC the Health Action Plan will pre-populate, providing a personalised care plan to print out and share with the patient and/or their carer.  If the patient’s specific learning disability impacts on their ability to read and /or understand the information ensure that it is provided in the best format to maximise their understanding and involvement.  The health action plan should contain key action points discuss and agreed during the AHC.

Additionally, be sure to explain any additional referral processes clearly in a manner appropriate to the patient’s level of understanding.

In recent years in Hampshire there have been preventable deaths of adults with a learning disability. All died from choking and all were known to have dysphagia so we have included Learning Disability: Choking to this page.

For further resources for clinicians, LD patients and carers see Learning Disabilities: Resources

Thanks goes to Southern Health’s LD team for help compiling this resource.

Monitoring & payment

There is a one payment count for this enhanced service.  Practices are required to manually input data into CQRS on a quarterly basis.  The data input will be in relation to payment count only with zeros being entered in the interim for the management information counts.

On CQRS there are two inputs for this ES:

  1. ES Indicator LD001 input number: The number of those patients aged 14 years or over in the financial year on the practice’s agreed learning disabilities register who received a completed health check in this quarter.
  2. ES indicator LD001 maximum: The number of patients aged 14 years or over in the financial year on the practices agreed learning disabilities register.

The ES indicator LD001 maximum input will always be manual as the data cannot be supplied by GPES as a local LD register code(s) is not available.  The sum of the ES indicator LD001 input over the year can never exceed the ES indicator LD001 maximum (practices cannot give more health checks than those on the local LD register).  When entering data manually, the LD001 maximum must be entered even when providing a nil return to LD001 input – many practices mistakenly returned a zero value for the register size when providing a nil return for the number of completed health checks.

Read Codes EMIS SystmOne SNOMED
Learning Disability Annual Health Assessment 9HB5 XaL3Q 199751000000100
Learning Disability Annual Health Assessment Declined 9HB6 XaQnv 514021000000103
Learning Disability Health Action Plan Completed 9HB4 XaJsd 712491005
Learning Disability Health Action Plan Reviewed 9HB2 XaJWA 413163007
Learning Disability Health Action Plan Declined 9HB0 XaJW9 413132002

Both LD Health Assessment and one Health Action Plan code must be used in order to receive payment

Additional points on clinical coding: (taken from the GMS contract changes & guidance)

https://www.england.nhs.uk/publication/technical-requirements-for-2019-20-gms-contract/

Codes listed below are deemed no longer suitable for use in coding patients with a diagnosis of a learning disability.  Practices may want to identify any patients with one of the following unsuitable diagnostic codes on their record and opportunistically recode these patients using one of the other available clinical codes.  The Annual Health Check may be a useful opportunity to do this.

  • Profound mental retardation (IQ below 20)
  • Severe mental retardation (IQ 20-34)
  • Mental handicap
  • Moderate mental retardation (IQ 35-49)
  • Borderline mental retardation (IQ 70-85)
  • Mild mental retardation (IQ 50-70)
  • Mental retardation
  • Educationally subnormal
  • Severely educationally subnormal

Learning disabilities – diagnostic codes

SNOMED
Developmental Academic Disorder 1855002
Mild Learning Disability 984661000000105
Moderate Learning Disability 984671000000103
Severe Learning Disability 508171000000105
Profound Learning Disability 984681000000101
On learning Disability Register 416075005
Specific Learning Disability 889211000000104
Significant Learning Disability 931001000000105

 Patients with LD who do not attend scheduled appointments

Top tips for practice for who patients with a learning disability DNA their Annual health Check

  1. Avoid this in the first place by phoning the day before to ensure they are coming.
  2. Check where and who the person lives with.
  3. Contact the person or parent/carer to find out why they did not attend the appointment and whether there is anything that can be done to facilitate next appointment.  It is important to consider reasonable adjustments.
  4. Re-arrange the appointment to suit
  5. Send a letter to confirm the date, time and venue of the appointment in accessible format or email or text
  6. Send accessible Annual Health Check (AHC) information
  7. Phone the person about the appointment a few days before and/or on the day of the appointment to remind them again

If the person DNAs again

  1. Consider if the person has a mental capacity to refuse this or if this has been refused by the support.
  2. If the person has the capacity to refuse an AHC this must be recorded and ideally flagged up so when/if the person attends a routine appointment for other reasons the AHC can be discussed in preparation of next invitation.
  3. If the person aged 18 years and above lacks capacity to refuse the AHC, follow the best interest decision making process.
  4. If you do not know whether the person lacks capacity investigate this further.
  5. Consider contacting Adult Services if you have concerns related to the care of the person with a learning disability including the refusal to attend AHC by the parent/carer as this may be a safeguarding issue.
  6. Contact your local Health Facilitator to discuss further.

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Annual Health Checks – Checklist/Summary

Gather a team of experts within your surgery proficient in the care of patients with LD
Ensure your Learning Disability Register is kept current
Preparation is key to success – actively include patients (&/their carers)
Be flexible and understanding in your approach
Consider reasonable adjustments & flag this on the patient’s notes so all staff aware
Tailor communication to be appropriate to the individual need/ability
Pay attention to language & environment; they are important
Consider becoming a Learning Disability Friendly GP Practice

Speak to your local Health Facilitator for details

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Resources

For Clinicians

**HIGHLY RECOMMENDED** For comprehensive easy to read leaflets and videos for patients with LD which cover a range of health and wellbeing issues. You will also find on this webpage an “easy read” version of an invite letter to send patients.

Information for Primary Care staff :: Southern Health NHS Foundation Trust

For a good overview of learning disabilities and how GPs can help watch:

https://www.youtube.com/watch?v=ZLn4qEM5X4c

Detailed overview of the electronic health clinical template

https://www.england.nhs.uk/wp-content/uploads/2017/05/nat-elec-health-check-ld-clinical-template.pdf

For Training in LD

Wessex LMCs Learning / Intellectual Disabilities – Audio and Video Podcasts and Recorded Webinars

https://www.gmc-uk.org/learningdisabilities/
http://elearning.rcgp.org.uk/mod/page/view.php?id=3927

For patients with Down’s Syndrome there is some advice on the annual health checks here

**HIGHLY RECOMMENDED**Surrey Health action plan – aimed at people living in Surrey but much of the resources are equally relevant to Wessex residents.  This resource has useful phrasing of questions and a template to make bespoke easy to read leaflets for surgeries. http://www.surreyhealthaction.org/

The University of Hertfordshire has produced a guide called understanding intellectual disability and health http://www.intellectualdisability.info

Communication toolkit to aid communication with patients with LD – needs purchasing http://www.asist.co.uk/shop/category/communication-toolkits

For patient with learning disabilities and sight loss: SeeAbility

Obesity and weight management and people with learning disabilities

Constipation management in people with learning disabilities

For information on “stopping over medication of people with learning disabilities” (STOMP) see here

For easy to read patient sheets on a full range of subjects please see this great resource –  https://widgit-health.com/easy-read-sheets/index.htm. There is a useful resource on “my medication review” which patients can fill in prior to their AHC.

For LD Patients and their Carers

HEE produces new guides to help people with learning disabilities and autism

**HIGHLY RECOMMENDED** For comprehensive easy to read leaflets and videos for patients with LD which cover a range of health and wellbeing issues

Information for Primary Care staff :: Southern Health NHS Foundation Trust

Videos for patients with LDs about Annual Health Checks:

https://www.youtube.com/watch?v=7gANZupyBHM&feature=youtu.be
https://www.youtube.com/watch?v=p4T9QrUchTU&t=  a video by the misfits theatre company about how social care providers can support people with LDs to get on the GP register and have health care checks

Leaflets for patients with LD explaining annual health checks:
https://www.mencap.org.uk/sites/default/files/2017-06/AHC%20Easy%20Read%20Guide%20Final.pdf

A picture of health is a NHS resource to help clinicians provide easy to read information to patients with LD http://www.apictureofhealth.southwest.nhs.uk/

Become a Learning Disability Friendly Practice

This Hampshire initiative is led by the Southern Health Strategic Health Facilitators.

Click here for more information on how to access the toolkit and support to work towards the award.

Reasonable Adjustments

The NHS has to make it as easy for disabled people to use health services as it is for people who are not disabled. This is called making reasonable adjustments. Read more on this here: NHS England » Reasonable adjustments

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Screening

There is universally poor uptake of screening invites by patients with LD.  This may be multi-factorial but we are in a good position to drive improvement in attendance.  The screening service receives no routine information as to whether an individual has a LD or not.  Appointments are sent out en masse therefore the standard appointment time allocated may be insufficient/inappropriate and surgeries can play a role.  GP surgeries might wish to inform local screening services about eligible patients and then reasonable adjustments can be made including easier read invites and longer appointments for screening.  It is good practice to discuss screening that a patient is eligible for at the Annual Health Check (AHC).  GP surgeries can provide easy to read information/leaflets to help patients make informed decisions about screening invitations.  This is an ideal opportunity to gain consent for sharing of their health record with screening agencies which can be discussed during the AHC.

Cervical Screening

Do not assume just because a person has a learning disability that they are not sexually active.  The uptake for cervical screening in patients with LD is very low.  The following resources might help improve this.

Information for patients with LDs – includes a useful film of women with LDs discussing smear tests
https://www.jostrust.org.uk/about-cervical-cancer/cervical-screening/cervical-screening-learning-disability

Easy read leaflets
Having a smear test
Cervical Screening: an easy guide

Breast Screening

Information for clinicians
Supporting women with Learning Disability to access breast screening

Information for patients with LDs
Easy read leaflet to breast screening

Abdominal Aorta Aneurysm Screening

For men who are 65 or older
Easy read leaflet to AAA screening

Bowel Screening

Bowel cancer screening is currently offered to everyone aged 60 – 74 and is currently being expanded to eventually cover everyone aged 50 – 74.
Easy read leaflet about bowel cancer screening

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LeDer

The Learning Disabilities Mortality Review (LeDer) programme is a national initiative established to support local areas to review the deaths of all people with Learning Disabilities aged 4 years and older.  Their aim is to identify learning from those deaths and take that learning forward into service improvement initiatives to help reduce premature mortality and health inequalities.

Reporting the death of someone with a Learning Disability to LeDer can be done by anyone (e.g. family member, GP, careworker, other) by telephone or email (see below).  This starts the review process to ultimately support quality improvement.  LeDer is not an investigation nor is it aimed at holding any individual or organisation to account.

The new LeDeR website and notification site was launched on 25 May 2021. This replaced the previous University of Bristol web pages and notification site, which has been decommissioned. The way in which a death is notified remains the same. The move follows the introduction of a new policy for LeDeR, also in easy read. From 1 June 2021, there will also be a new process for reviewers to follow, new training and a new web platform for the LeDeR workforce.

It is anticipated that an announcement about the new academic partner will be made in the coming weeks.

It has approval from the Secretary of State under section 251 of the NHS Act 2006 to process patient identifiable information without the patient’s consent.  GPs may be approached by a reviewer to find out information about a case.

July 2021

A new information leaflet has been produced providing GP’s more information about the LeDeR process. Please click on the image below.

LMC View: This is not a requirement under the GMS contract.  However the LMC recognise the importance of supporting this vulnerable population and the opportunity to learn from reviews.  If you feel able to participate then you are able to do so under the section 251.  However we do not believe there to be a statutory requirement on General Practice to do this. The LMC supports Significant Event Analysis as an important learning process and participation in LeDer reviews can contribute to this with added value in terms of GP appraisal and CQC reviews.

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Choking

In recent years there have been preventable deaths of adults with a learning disability in Hampshire.  All died from choking and all were known to have dysphagia.  All had eating and drinking guidelines in place which were not being followed accurately.  As a result we want to highlight this risk to GPs.  There is a key role for clinicians undertaking Annual Health Checks (AHC) to identify patients at risk of choking.

The Hampshire Safeguarding Adults Board found dysphagia, poor oral health, behaviours, pica (eating non-food items), medication and deliberate self-harm as reasons people with LDs choked in Hampshire.  To read the full report click here.

So what do you need to do?

Always consider the patient’s choking risk – at the AHC as well as opportunistically.

Flag the patient record if you get information suggesting they have dysphagia or receive details from the community LD team about dysphagia.

At each consultation, ask the following three questions of carers:

  1. Are you aware the patient is at increased risk of choking and aspiration and has specific speech and language recommendations for eating and drinking?
  2. Are you and your team following these eating and drinking guidelines given for the patient?
  3. Has there been a change in the patient’s ability to eat and drink?

If the answer to the first two is NO, please discuss with the carers the need to follow the recommendations.

A useful flow chart for managing dysphagia in LD patients for GPs is listed in Appendix 4, page 44 of the review document .

If a choking risk is identified surgeries should contact their local Learning Disability Health Team in the first instance.

We need to raise the awareness of the choking risk for all carers and staff.  Where there is a recognised swallow risk a clear plan needs to exist, with review and reassessment should the individual’s circumstances change, e.g. following addition of a new medication that could alter this.

Another important step is to ensure that oral health is maintained and GPs can encourage LD patients to attend dental appointments.

Providing support and ensuring information about choking and swallowing is available to carers is vital.  The Hampshire SLT LD team often signpost people to Help Stop Choking Website.  There is advice for patients, professionals and carers in written and video format and it comes highly recommended.

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Local Teams Contacts

Area Contact
Hampshire & IOW
  • North Hampshire Basingstoke – 01962 764560 (based at Winchester)
  • Winchester – 01962 764560
  • Fareham, Gosport and South East Hampshire – 01329 316350
  • Totton, Eastleigh Borough, New Forest & Andover – 023 8087 4333
  • Southampton – 02382 310300 or email:
  • Portsmouth – 03001234019 / Mobile: 07825503807
    •  Julie Chapman, Clinical Leader Health Facilitation

Email: Julie.chapman@solent.nhs.uk

Secure email: julie.chapman1@nhs.net

Dorset Find your local team across Dorset

Marie Hannant – Community Nurse Learning Disabilities

Email:  marie.hannant@nhs.net

Wiltshire
  • Monkton Park, Chippenham – Learning Disabilities Intensive Support Service (LDWISS) – 0300 4560100
  • County Hall, Trowbridge – Learning Disabilities Intensive Support Service (LDWISS) – 0300 4560100
  • Savernake Hospital, Marlborough – Learning Disabilities Intensive Support Service (LDWISS), Specialised People With Learning Disability, Psychiatry – 0300 4560100
  • Bourne Hill, Salisbury – Learning Disabilities Intensive Support Service (LDWISS), Specialised People – 0300 4560100
  • Chatsworth House, Swindon – Specialised Community Learning Disability and Autism Diagnostic Service. Telephone: 01793 715 000, Monday to Friday 09:00 – 17:00.
  • Learning disabilities – Avon and Wiltshire Mental Health Partnership NHS Trust ( awp.nhs.uk )
  • Wiltshire Council Adult Care: 0300 456 0111
  • Wiltshire Council Families & Child Care: 0300 456 0108

Please ask to speak with a member of CTPLD (Community Team for People with Learning disability)

BaNES
  • Petherton Resource Centre, Bristol – Community Forensic Learning Disabilities Team 01275 796420
  • New Friends Hall, Community Learning Disabilities Teams, North Bristol – 0117 908 5000, Central Bristol – 0117 9585 666, South Bristol – 0117 9878 383
  • St Martins Hospital, Bath – Learning Disabilities Psychology Team 01225 831566

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