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Learning Disabilities Identification Protocol


This protocol sets out the practice’s approach to the creation and management of the learning disability register and the patients on it. The protocol is consistent with the requirements of the Learning Disabilities DES which was launched in 2008, and is continuing through to March 2019.

This ES has since been extended and allows practices to offer medicals to patients 14 years or older and requires practices to produce a health action plan. The guidance for the learning disabilities ES for 2018-2019 is included in the GMS contract 2018-2019 – guidance and audit requirements document, which will be published on the NHS Employers website.

Nature of Learning Disability

This definition comes from the DoH’s Valuing People Document


Learning disability includes the presence of:

A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with, a reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development.

This definition encompasses people with a broad range of disabilities. The presence of a low intelligence quotient, for example an IQ below 70, is not, of itself, a sufficient reason for deciding whether an individual should be provided with additional health and social care support. An assessment of social functioning and communication skills should also be taken into account when determining need. Many people with learning disabilities also have physical and/or sensory impairments. The definition covers adults with autism who also have learning disabilities, but not those with a higher level autistic spectrum disorder who may be of average or even above average intelligence – such as some people with Asperger’s Syndrome.

‘Learning disability’ does not include all those who have a ‘learning difficulty’ which is more broadly defined in education legislation.

People with learning disabilities have the right to the same level of medical and nursing care as that provided to the general population. This care must be flexible and responsive and any diagnosis or treatment must take into account any specific needs generated by their learning disability. Evidence suggests that those with a learning disability have more health problems than the general population.

Research has demonstrated that people with learning disabilities have greater health needs than the general population, may have difficulty accessing primary care and have lower uptake rates of routine screening than the general population.

Individual “learning styles”, “learning differences”, “academic problems” and “test difficulty/anxiety” in and of themselves do not constitute a learning disability. It is important to rule out alternative explanations such as emotional, attentional, or motivational problems that may be interfering with learning but do not constitute a learning disability.


DES Requirements

The directed enhanced service requires a register and an annual health check for all patients > 14 years old, including those on the local authority register, using an agreed protocol such as the Cardiff Check.

Practices should approach their CCG to liaise with local authorities to produce a practice list from central records. These patients should then be assessed for possible inclusion on the register.

To facilitate this, it is a normal requirement for nominated staff to attend CCG training around learning disabilities, in order to provide an effective lead within the practice. 

Health checks will include;

  • Health promotion
  • Chronic illness enquiry
  • A physical examination
  • Epilepsy
  • Behaviour and mental health
  • Specific syndrome check
  • Medication check
  • Any secondary care coordination check
  • Review of any transition arrangements

Practice procedure will be subject to a year-end audit report.



The clinical lead within the practice for this register is Dr Abubacker.

  • A person with a learning disability should be identified in order to ensure that advance planning is undertaken to address any specific needs and, where necessary, to modify investigations or treatment to meet those needs.
  • Where it is known that a person has a learning disability this will be coded into the clinical system [918e]. This will highlight to secretarial, clerical, nursing, medical and other professional staff that the person may require specific care or support.

The following points may indicate a learning disability:

  • Learning disability can be mild, moderate or severe
  • Specific Syndrome e.g. Down’s, Fragile X, Angelman, Cri-Du-Chat, Prader-Willi, Edwards
  • It is useful to find out what sort of school the person attended 
  • Problems with understanding
  • Has a Community Learning Disability Nurse
  • Has a Learning Disability Social Worker/Care Manager
  • Has been seen by Psychiatrist in Learning Disabilities
  • Former terminology – mental handicap, mental retardation, intellectual disability
  • People usually have a learning disability from birth or sometimes from early childhood
  • Lives in a residential or nursing home for people with learning disabilities

A learning disability is not (NB this list is not exhaustive):

  • Dyslexia (learning difficulty in educational legislation)
  • People who have a learning difficulty (educational term)
  • Presence of physical disabilities only
  • Stroke victims
  • Presence of mental health problem only
  • ADHD


Creation of a Register

Valuing People (DoH, 2001) estimates that on average there are about 8 people with severe and 50 with mild/moderate learning disabilities on a practice list of 2000.

As an initial base, the register will be established of those clients currently known to the practice. The practice will use the following criteria to assess whether someone has a learning disability:

Patients with the following diagnosis will be considered as suitable to be invited to join the register:

  • Asperger’s syndrome
  • Autism 
  • Down’s syndrome
  • Educational difficulties
  • Turner syndrome
  • Congenital abnormalities

Regular contact should be made with the following organisations in order for their special needs register to be cross checked:

  • Community Learning disability team
  • Local Social Services
  • Social Education Centres

All members of staff and clinicians dealing with incoming post from allied agencies are asked to bring to the attention of [Insert clinical Lead name] any comments regarding learning disabilities 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.


Learning Disabilities Register: Patient Information – Contacts



ASSERT is a United Kingdom based support group run by volunteers who have direct contact with people with Angelman Syndrome. The majority of the trustees are parents or relatives of children or adults with Angelman Syndrome.


Address: ASSERT

PO Box 4962 


CV11 9FD

Tel 0300 9990102




The National Autistic Society exists to champion the rights and interests of all people with autism and to ensure that they and their families receive quality services appropriate to their needs. The website includes information about autism and Asperger syndrome, the NAS and its services and activities.

Tel: 020-7833-2299 

Fax: 020-7833-9666

Helpline Tel 0808 8001050  

Email: or


Address: The National Autistic Society

393 City Road





This support group:

 Support and friendship for families and carers throughout Britain

  • Raises awareness of Cri-Du-Chat Syndrome amongst the medical profession and the public.
  • Raises funds to promote research through carefully selected projects.
  • Gives information and advice to families and professionals.
  • Publishes a newsletter with general items of interest for families and carers.



Tel 0845 0942725

Cri du Chat Syndrome Support Group

POBOX 73631


SW14 9BS



S.O.F.T UK provides support for families affected by Patau’s Syndrome (Trisomy 13), Edward’s Syndrome (Trisomy 18), partial Trisomy, mosaicism, rings, translocation, deletion, and related disorders.

Tel:  0330 088 1384



Address: SOFT UK

48 Froggatts Ride


Sutton Coldfield

B76 2TQ


Fragile X

This society aims to:

  • Provide support and information for Fragile X families from those who share and understand their concerns and needs
  • Educate, inform and advise the public and professional people about the prevalence and nature of Fragile X in order to raise awareness and understanding of the syndrome and improve the care of all people affected by Fragile X
  • Encourage research into all aspects of the syndrome and publicise the results

Tel: 01371-875100



Address: The Fragile X Society

Rood End House

6 Stortford Road

Great Dunmow





A registered charity and the only organisation in the UK which is dedicated to supporting people with Prader-Willi syndrome (PWS), their families, carers, and the professionals who work with them.

Tel:  01332 365676

Fax:  01332 360401



Address: PWSA UK,

Suite 4.4, Litchurch Plaza,

Litchurch Lane,


DE24 8AA


Turner Syndrome

The Society provides accurate and up to date information on Turner Syndrome and the many aspects of living with the condition on a daily basis.

Tel:  0141 952-8006  Helpline 0300 111 7520



Address: The Turners Syndrome Support Society (UK)

12 Simpson Court

11 South Ave

Clydebank Business Park


G81 2NR


Down’s Syndrome

“Helping people with Down’s syndrome to live full and rewarding lives. The only organisation in this country focusing solely on all aspects of living successfully with Down’s syndrome.” They provide information and support for people with Down’s syndrome, their families and carers, as well as being a resource for interested professionals.

England and Wales

Tel:  0333 1212300



Address: Langdon Down Centre

2a Langdon Park


Northern Ireland

Unit 2 Marlborough House

348, Lisburn Road



Tel: 02980 665 260