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Clinical Knowledge

Learning & Intellectual Disability

Intro

According to Public Health England, about 2.5% of the population has a learning disability (LD). Yet most GP LD registers show only about 0.4% of their practice population. The ‘missing’ 2% might be people with a mild learning disability, or with other diagnoses which appear on the disease register but are not separately recorded. This includes, for example, people with Down’s Syndrome, autism or cerebral palsy that also have a learning disability.

Why is this area important?

Because people with a learning disability face many distinct health inequalities:

  • Significantly reduced life expectancy, 18 years lower for women and 14 years lower for men (NHS Digital 2017-18).
  • Poorer nutrition and increased likelihood to be either obese or underweight. They are less likely to have help for their obesity, including screening for thyroid disease and diabetes.
  • Very low attendance in the three national cancer screening programmes (breast, bowel and cervical).
  • Very low uptake of flu immunisation yet respiratory infection is one of the most frequent causes of preventable deaths.
  • The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) found, over a quarter of deaths could be prevented with better-quality healthcare. Recently, the learning disabilities mortality review (LeDeR) raised this figure to over a third.
  • Greater prevalence of epilepsy and severe mental health illnesses. Also, multimorbidity, complexity, polypharmacy and greater likelihood of adverse events from incompatible interventions (PHE 2017).

Key Points

  • A person with Learning Disability is NOT the same as someone with a learning difficulty.   For example, someone with Down’s syndrome has a learning DISABILITY.    But someone with Dyslexia is someone with a learning difficulty.  In general, a learning disability constitutes a condition which affects learning and intelligence across all areas of life, whereas a learning difficulty constitutes a condition which creates an obstacle to a specific form of learning, but does not affect the overall IQ of an individual.   In other words, a learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life. People with a learning disability not only take longer to learn but may need support to develop new skills, understand complicated information and interact with other people. 
  • Many people with learning disabilities can access mainstream services and just need some reasonable adjustments making – like longer appointments, quiet environments or carers to support at appointments.    Don’t always think you need to go straight to the help of a specialist LD service first.   There are things you can do which are straight forward, often common sense, and don’t require massive complex changes.
  • But most areas in the UK will have a specialist LD service should you need them.  They provide health support to adults with a learning disability (NOT learning difficulty) who need additional support to get their health needs met. Primary care must have tried using mainstream services and making reasonable adjustments to their care before they refer to such specialist teams. 

Key clincal things

  • The main thing is to optimise psychotropic medication in line with STOMP and STAMP.
  • The other thing is to do an Annual Health Check – because these group of patients get missed – but then go on to develop morbidity and mortality from unrecognised disease.

Restrictive intervention (Safe Holds)

  • If a patient with a learning disability doesn’t have the capacity to consent to bloods, tests or treatment – then a Restrictive Intervention may be required.
  • Restrictive Interventions are deliberate acts on the part of the other person(s) that restrict a patient’s movement,  liberty and/or freedom to act independently in order to
      • Take immediate control of a dangerous situation where there is a real possibility of harm to the person or others if no action is undertaken, or
      • End or reduce significantly the danger to the patient or others.  (MHA CoP, 2015)
  • Restrictive practice is making someone do something they don’t want to do or stopping someone from doing something they want to do (Skills for Health, 2014)
  • KEY POINT: The use of Restrictive Interventions (safe holds) are a last resort as they impact on the person’s human rights – they must be reasonable and proportionate as they can be traumatising for people
  • If you are considering a Restrictive Intervention…
      • Consider a referral to the specialist Learning Disability unit forst – to ensure the person gets the right health treatment.
      • There must be a significant clinical need for the intervention to be done.  For example, in the case of bloods – these must be necessary and urgent.  So, for example, this does NOT include routine annual health checks unless there has been a change in the person’s health or presentation (these must be identified in the referral and on the consent form)
      • Attach something like Consent Form 4 (in Downloads section above) to your referral letter to the Learning Disabilities unit.
          • Document that restrictive interventions (safe holds) are required on the Consent Form 4
          • State what has been tried previously to evidence restrictive interventions are required
          • State why it is in the person’s best interests to have the bloods and that the risk of a potential health issue outweighs the risk of using restrictive interventions
          • Without a clear rationale and completed forms the specialist Learning Disability team will be unable to support you.
          • Put a contact name and direct phone number on the referral form so they can contact you with any queries

How to improve care in Learning Disabilities

To focus on improving care of people with a LD to:

  1. Develop a system to identify people with LD
  2. Increase the uptake of annual health checks (AHC)
  3. Optimise psychotropic medication in line with STOMP
  4. Identify & record reasonable adjustments
  5. Help the patient engage with community resources via social prescribing to health & wellbeing
  6. Link up with other GPs.  Form a network peer review meetings

Full info: 

Anyone with LD > Age 14 should:

  1. Be offered a specific LD related Annual Health Check
  2. Have a health action plan to address health issues identified in the check. You could include the social prescribing contact in your practice to support people to be able to address these actions.

Practices must:

  • Maintain a ‘health check register’ of patients aged 14 & over with LD
  • Check the number on their LD register reflects the current prevalence (at least 0.5%). 
  • Nominated lead for LD who coordinates: staff training, delivering the ES and provides the AHCs
  • Have a MDT education session

Other Top Tips - practice tips.

THiNK LD campaign

How do I THiNK LD?

Use my mnemonic LEAF.   L is for Learning Disability.   E is for Equality.  A is for Access.  F is for Flexible.    So, in Learning Disabilities, think E, A, F. 

  1. THiNK ACCESS
    Is there anything stopping people with learning disabilities using the service our surgery provide?
  2. THiNK FLEXIBLE
    Can our surgery offer any adjustments that could improve people’s experience?
  3. THiNK EQUALITY
    Will people with learning disabilities have the same outcomes as anyone else?

REASONABLE ADJUSTMENTS

What could be a reasonable adjustment? 

  • Longer appointments? 
  • Quiet end of the day

 The Accessible Information Standard (AIS) 




The NHSE introduced the AIS to help clarify what is reasonable under the Equality Act 2006 to ensure people who have a disability, impairment or sensory loss receive information they can easily read or understand, and get support so they can communicate effectively with health and social care services. It covers patients, their parents and carers.   

 

Please leave a comment if you have a tip, spot an error, spot something missing or have a suggestion for a web resource. And of course, if you have developed a resource of your own, please email it to me to share with others.

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