A person is considered to have a learning disability if they have a significantly reduced ability to understand new or complex information and learn new skills, along with a reduced ability to cope independently due to difficulties with social or adaptive functioning, with these difficulties beginning before the age of 18 and having a lasting impact on development. It is sometimes referred to as an intellectual disability or global developmental delay. This lifelong condition affects an estimated 1.3 million people in England but, of these, only approximately 330,000 people are listed on the GP learning disability register.
Autism is defined as a neurodevelopmental disorder where a person experiences difficulties in social communication and interaction and may demonstrate restricted or repetitive patterns of behaviour. It is not a learning disability, although an estimated one-third of the 1 million autistic people in the UK will also have a learning disability, and 40% will also have ADHD (attention deficit hyperactivity disorder).
Stopping over medication of people with a learning disability and autistic people (STOMP) is a national NHS England work programme to stop the inappropriate prescribing of psychotropic medications, an identified priority in the NHS Long Term Plan.
Alongside this, the national supporting treatment and appropriate medication in paediatrics (STAMP) programme aims to make sure that autistic children and young people and those with a learning disability get medication for the right reason, in the right dose and for as short a time as possible.
These programmes work particularly closely with people with lived experience and families and carers organisations as well as a range of health and social care professional bodies.
People with a learning disability are 14-times more likely to be prescribed an antipsychotic medication than the general population and this is often to treat behaviour that is thought to be challenging (an unlicensed indication). Possible side effects include (but are not limited to) sedation, weight gain, increased diabetic and CVD risk, movement disorders, and sexual dysfunction. Given this inequality in prescribing and the potential impact side effects may have on quality of life, regular reviews should be undertaken, with a view to deprescribing where antipsychotic medication is no longer appropriate. Structured medication reviews (SMRs) are the best tested intervention for reducing overprescribing. Studies have shown them to be an effective way to address inappropriate prescribing and polypharmacy, and they are endorsed by NICE.
To support patients to get the most from their SMR, practices should utilise the range of materials that have been co-produced with people with lived experience of learning disability or autism (see below). Linking timing of SMRs with the annual health checks (AHCs) for people with learning disability, can reduce the need for multiple blood tests and visits to primary care settings.
Under the Equality Act 2010, public sector organisations must make reasonable adjustments to ensure disabled people can access services equally. These adjustments include physical changes such as ramps, lifts, and wider doors, as well as changes to policies, procedures, and staff training to improve accessibility.
For people with learning disabilities, adjustments may involve providing clear and simple explanations, sometimes repeated, as well as support with appointments and help with understanding and giving consent. This should be done in line with the Mental Capacity Act 2005, which supports individuals to make decisions where possible.
Organisations also have an anticipatory duty, meaning they must think ahead and make changes in advance rather than waiting for difficulties to arise. This helps remove barriers and ensures services are more inclusive.
In addition, NHS providers must follow the Accessible Information Standard. This ensures people with disabilities or sensory impairments receive information in accessible formats, helping them understand and communicate effectively with services.
Below are links to resources that support organisations in considering and implementing reasonable adjustments to help people with learning disabilities or autism access services.
- Medicines Optimisation - Useful Resources for Professionals :: NHS Hampshire and Isle of Wight
- Reasonable adjustments for people with a learning disability - GOV.UK
- How to make Reasonable Adjustments Checklist v4.pdf
- The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated. The capability is now available on the National Care Records Service (NCRS). More information can be found here: Reasonable Adjustment Flag - NHS England Digital
- Reducing health inequalities :: NHS Hampshire and Isle of Wight
Information for patients, families and carers:
- Preparing for your medication review - easy read
- Preparing for your medication review - plain English
- Invite letter to your medication review - easy read
- Invite letter to your medication review - plain English
Preparing for structured medication reviews:
- Guidance to help professionals prepare for psychotropic SMR
- How to make reasonable adjustments check list
- Best Practice Guidance for completing a STOMP Structured Medication Review - full version
- Best Practice Guidance for completing a STOMP Structured Medication Review - summary
- Health Innovation Network (HIN) resources to support patients having a structured medication review (SMR); contains useful easy read leaflets HIN SMR resources
- Free to access with a suitable email, via NHS Futures STOMP and STAMP - Futures
LeDeR was established in 2015, following recommendations from the 2013 Confidential Inquiry into Premature deaths of people with Learning Disabilities (CIPOLD), which itself was embarked upon after the Death by Indifference report was published by Mencap in 2007.
Having a learning disability and/or autism contributes to the degree of healthcare inequality a person might face over their lifetime. This is confirmed by the findings of the latest LeDeR review (2023) which found that, whilst improved on the 2022 review, people with a learning disability or autism die an average 19.5 years younger than the general population, with 40% of those deaths deemed to have been avoidable, nearly double the avoidable death rate of the general population.
It is for that reason that HIOW have determined that the learning disability population will be one of the ‘PLUS’ populations included in the Core20PLUS5 initiative.
Practices can demonstrate their commitment to improving the lives of these populations by gaining Learning Disability Friendly GP practice award, a local project developed to support quality improvements which would improve health outcomes of people with a learning disability. Details of the steps to follow when working towards this can be found here Learning Disability friendly GP practice award :: Hampshire and Isle of Wight NHS Foundation Trust or by contacting Hampshire and Isle of Wight Healthcare (HIOWHC) NHS Foundation Trust’s Health Facilitation Team, whose details are available here: Health Facilitation :: Hampshire and Isle of Wight NHS Foundation Trust.
