Learning disabilities information sheet

The Department of Health defines a learning disability as, “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”.

The difference between a learning disability and a learning difficulty

A learning disability affects someone in terms of their global learning and in both areas explained above, not in just certain areas of learning – if this was the case, this would be seen as a learning difficulty.

A learning difficulty can be overcome with support, whereas a learning disability cannot.

Examples of a learning difficulty in comparison, include dyslexia, dyspraxia, and attention deficit hyperactivity disorder and it is defined as, “a type of special educational need which affect areas of learning”.

Using an example of a learning difficulty, dyslexia effects word reading and spelling which can be overcome with the right support. Having dyslexia does not mean someone has impaired intelligence or social functioning.

Find out more about the difference between a learning disability and a learning difficulty.

LeDeR and health inequalities

In the UK there are 1.5 million people who have a learning disability which is estimated as 2.16% of adults and 2.5% of children. We know that people with a learning disability experience poorer health than those without a learning disability, meaning the population faces premature death with at least half of the deaths being avoidable. From the 2020 learning disability mortality review (leder), statistics show that people with a learning disability are dying on average between an alarming 23 and 27 years younger than the greater population.

Access the latest LeDeR Action From Learning Report.

Find out more about LeDeR.

For several years, the leading cause of premature death for people with a learning disability has been respiratory disease – now, we also have Covid which people with a learning disability are more susceptible to. Additional common health issues in the learning disability population include coronary heart disease, cancer, due to a lack of screening, and gastrointestinal problems, including constipation and dysphagia. Certain health issues can be overlooked by professionals due to diagnostic overshadowing – where a professional presumes someone’s expressive behaviour is a part of their learning disability. There is always a reason behind expressive behaviour and it is very often a form of communication.

Read more about diagnostic overshadowing.

Learning disability registers, coding and the inclusion tool

As part of the Quality Outcomes Framework (QOF), most GP’s hold a learning disability register which any patient with a learning disability should be added whether their learning disability is mild, moderate, severe, or profound. The registers should be reviewed annually in accordance with NHS England’s guidance, to be kept accurate and up to date.

We know that there are three-quarters of the learning disability population missing from the GP registers therefore an additional search on EMIS or Ardens must be made to review patients that are not currently on the register but have a code that may indicate a learning disability.

An example of this is cerebral palsy. In the document linked below, you’ll find cerebral palsy in Appendix 2, which is the list of codes that may indicate a learning disability. Appendix 1 highlights the codes that are indicative of a learning disability and the third appendix are codes that are outdated and can be replaced with a more appropriate code.

Whilst the learning disability registers are reviewed and the additional search is made, certain patients’ records may have to be reviewed in more depth to uncover evidence of a learning disability. As part of NHS England’s guidance to improving the identification of people with a learning disability, an inclusion tool has been developed to support clinical decision-making in regard to adding someone to the learning disability register. Completing the inclusion tool will support clinical decision-making regarding adding someone to the register or not. The inclusion tool can be found at the end of the documentation linked above, and it is also available on EMIS.

People that should not be on the learning disability register:

• patients with only autism and not a learning disability.
• patients with only learning difficulties and not a learning disability.
• patients with only cerebral palsy and not a learning disability.
• patients with a confirmed Asperger’s diagnosis - Asperger’s is a high-functioning level of autism.

Annual health checks and learning disability leads

Being on the learning disability register means that once the person reaches their fourteenth birthday, they should be invited for their annual health check.

An annual health check is a full holistic evidence-based health check for people with a learning disability beginning when they turn 14, conducted by GP’s and other clinicians where necessary and carried out every year.

An annual health check must be face-to-face and a minimum of 30 minutes long whilst someone’s health is reviewed holistically. Here, you can find an overview of annual health checks from NHS England.

To support the full process of annual health checks, in each surgery, we encourage both clinicians and non-clinicians to be learning disability leads, (which may also be known as champions) to ensure the process of inviting people to their appointment is as effective as possible. The role may be allocated to people that already oversee the annual health check invitations and to those that complete them, with no extra workload.

A learning disability lead would:

• be a recognised learning disability lead
• become recognisable to people with a learning disability – you will receive a pin badge to wear.
• continue to oversee the annual health checks – inviting patients in and completing the annual health checks.
• be a point of contact for the assigned link nurse from the health facilitation team or the community learning disability team to review the register annually.
• identify and digitally flag patients’ reasonable adjustments.
• receive support and face-to-face training from the health facilitation team.
• receive a certificate and resources such as easy read documentation and where to go for additional support.

Reasonable adjustments

Under the Equality Act (2010), reasonable adjustments are changes made to health services to make them accessible for people with disabilities, whether this is a physical disability, a learning disability or autism. Being aware of, digitally flagging and making reasonable adjustments can be the difference between someone attending and not attending their health appointment.

Some examples of reasonable adjustments may include:

• waiting in a quiet area for their appointment
• having an appointment at the quietest time of the day (before or after surgery hours)
• having support from a parent or carer during the appointment
• using pictorial or easy read documentation throughout the appointment
• having a home visit

What you can do to support someone during their annual health check:

• consider the environment – is it noisy, is it busy?
• speak directly to the individual
• speak in clear and simple language – avoid using medical jargon
• make all information accessible – easy read, pictorial
• give someone time to process what you have said before you respond
• check that the individual has understood what you are telling them – ask them to repeat the information back to you in a different way
• use the full time allocated for the annual health check – a minimum of 30 minutes
• complete and give the individual their health action plan

Before the annual health check and the pre-health check questionnaire

Prior to starting the process of an annual health check, it’s good to be aware of the reasonable adjustments the individual requires. It may be useful to know how the individual can best communicate. Can they read? Can they write? A phone call to the individual or to anyone that knows them well can make the process more efficient. It also means you can find out any reasonable adjustments the individual requires before coming into the surgery and reduce the number of patients that do not attend.

As a part of the invitation process, sending out an easy read pre-health check questionnaire will generate a guide and any required focus for the appointment. The pre-health check questionnaire can be returned prior to the individual’s appointment and can help you find out more about the individual and if they have any current health concerns. You can find one on EMIS.

During the annual health check

An annual health check should cover someone’s holistic health – from physical health to mental wellbeing and everything in between. Top things to cover during an annual health check, but not exhaustive are:

• physical observations – height, weight, blood pressure etc.
• mental health – how is the person feeling
• health promotion – including vaccinations and weight management
• abdominal examinations – people with a learning disability are more likely to suffer from constipation than the wider population
• chest auscultation – high rates of respiratory disease
• hearing – check for a build up of earwax, have they had a hearing test?
• sight – check their sight test is up to date
• epilepsy care – people with a learning disability are more likely to have epilepsy than the greater population
• dental care – do they go for regular check-ups? A referral to specialist dentistry may be required
• sleep hygiene

Screening

Where appropriate, during someone’s annual health check national screening programmes should be discussed, including what screening is, the benefits of attending screening and the process of screening. Again, for these discussions, reasonable adjustments may need to be in place, for example using easy read documentation. Further information about screening for people with a learning disability can be found here.

Medication reviews

Medication reviews during an annual health check is a national focus and in accordance with STOMP – stopping the over medication of people with a learning disability, autism, or both. You can find out more about STOMP here.