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Nigel's surgery 53: Care of people with a learning disability in GP practices
This mythbuster has been updated with the latest advice and resources
When we inspect general practices, we look at how they provide care to different groups of people.
One of these population groups is 'people whose circumstances may make them vulnerable'. This includes people with a learning disability.
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.
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).
Enhanced service (ES)
As part of the ES, anyone with a learning disability over the age of 14 should:
- be offered a specific learning disability related annual health check (AHC),
- have a health action plan to address health issues identified in this check.
As well as AHCs, practices taking part in the ES must:
- Maintain a 'health check register' of patients aged 14 and over with learning disabilities:
- base this around the Quality Outcome Framework (QOF) LD register.
- include other patients known to social services
- share information with local authorities
- an AHC may help some people on the QOF register who do not meet the eligibility criteria. Offering them an AHC could be a reasonable adjustment.
- Check the number of people on their registered list with a learning disability reflects the current prevalence (at least 0.5%).
- Have a nominated lead for learning disability who coordinates:
- staff training and updates for other practice staff
- delivering the enhanced service
- providing AHCs.
- Attend a multi-professional education session. Training is mandatory for new practices wishing to take part and must be kept up-to-date.
If a practice is not providing this ES, we expect them to support people with a learning disability so that they:
- receive an AHC
- develop a health action plan.
If people do not attend:
- review the appointments process to make sure reasonable adjustments are in place
- liaise with the local health facilitator/primary care liaison nurse (or similar) for advice and support.
Accessible information standards
Organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard. For more information see Nigel’s surgery 20: making information accessible.
GP practices must make reasonable adjustments under equality legislation to make sure people with a learning disability can use their service on the same basis as others. See Nigel’s surgery 67: reasonable adjustments for disabled people.
- Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD 2013)
- Guide to making information accessible for people with a learning disability (NHS England 2018)
- Health and Care of People with Learning Disabilities: 2017-18 (NHS Digital)
- Improving Health and Lives Learning Disability Observatory (Public Health England 2015)
- Learning disabilities (NHS England)
- Learning disabilities (Royal College of General Practitioners)
- People with learning disabilities over-prescribed psychiatric drugs (Public Health England)
- Quality Checking Health Checks for People with Learning Disabilities (Public Health England 2017)
- Right care pathway - reasonable adjustments for people with learning disabilities who have diabetes (NHSE 2017)
- Stopping over medication of people with a learning disability, autism or both (STOMP) (NHS England)
- Supporting Treatment and Appropriate Medication in Paediatrics (STAMP) (NHS England)
- The Learning Disabilities Mortality Review Annual Report 2017 (LeDeR)
- Last updated:
- 25 September 2019