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Nigel's surgery 53: Care of people with a learning disability in GP practices
We have updated this Mythbuster to include details of legal guidance from NHS England during the Coronavirus (COVID-19) pandemic.
When we inspect general practices, we look at how they adapt and provide care to 'people whose circumstances may make them vulnerable'. This includes people living with a learning disability.
There are 1.5 million people living with a learning disability in the UK.
People living with a learning disability have a shorter life expectancy. They have a greater risk of early death than the general population. This can be linked to inequalities in the healthcare received. The increase of health conditions people are likely to experience include:
- respiratory conditions and
- coronary heart disease.
The learning disabilities mortality review (LeDeR) found a third of deaths could be prevented with better quality healthcare.
Barriers preventing people with a learning disability from accessing good quality health care include:
- the patient not being identified as having a learning disability
- staff having little understanding about learning disabilities
- failure to make correct diagnosis
- anxiety or a lack of confidence for people with a learning disability
- lack of care coordination
- inadequate aftercare or follow-up care.
People with a learning disability face many health inequalities which impact on life expectancy. Coronary heart disease and respiratory disease are leading causes of death. They are less likely to take up preventive care, healthcare reviews, national screening and vaccination. People with a learning disability and asthma can be twice as likely to be smokers. They are less likely to have help for obesity, including screening for thyroid disease and diabetes.
People living with a learning disability are at an increased risk of dementia, particularly for those people with Down’s Syndrome.
They are more likely to experience severe mental illness and have higher rates of:
- polypharmacy and
- greater likelihood of adverse events from incompatible interventions (PHE 2017).
NHS England have produced legal guidance for mental health, learning disability and autism, and specialised commissioning services supporting people of all ages during the COVID-19 pandemic.
Enhanced service (ES)
The NHS Long Term Plan (June 2019) committed to improve uptake of annual health checks in primary care for people aged 14 years and over. The plan also committed to increase people getting their annual seasonal flu vaccination.
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). The Downs Syndrome Association have produced resources to help with this.
- have a health action plan to address health issues identified in this check.
- Have a medicines review to stop over medication of people with a learning disability, autism or both (STOMP).
As well as AHCs, practices taking part in the service must:
- accurately identify patients with LD and check this reflects the current prevalence (at least 0.5%).
- 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.
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 service, we expect them to support people with a learning disability so they:
- receive an AHC
- develop a health action plan
If people do not attend practice staff should:
- review the appointments process to make sure reasonable adjustments are in place
- speak with the patients and their carers to discover why they do not attend the practice.
- engage with the local health facilitator/primary care liaison nurse (or similar) for advice and support.
LeDeR have produced guidance on providing specialist services for people with learning disabilities.
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.
NHS England have produced a guide to making information accessible for people with a learning disability.
GP practices must make reasonable adjustments under equality legislation. This is 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.
The Equality and Human Rights Commission guidance on disability discrimination is available on their website.
The Learning Disabilities Mortality Review Programme at University of Bristol have produced factsheet about avoiding discrimination and making reasonable adjustments for people with learning disabilities. Practices should speak with carers and patients to find out what adjustments the person needs to support them attending. For example, a quiet room or waiting in a car to avoid waiting in crowded spaces.
- Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD 2013)
- Health and Care of People with Learning Disabilities: 2017-18 (NHS Digital)
- People with learning disabilities in England 2015 (Public Health England 2015)
- Learning disability and autism (NHS England)
- Learning disabilities (Royal College of General Practitioners)
- People with learning disabilities health checks audit tool (Public Health England 2017)
- Right care pathway diabetes pathway - reasonable adjustments for people with learning disabilities who have diabetes (NHS England 2017)
- Supporting Treatment and Appropriate Medication in Paediatrics (STAMP) (NHS England)
- LeDeR annual Report 2018 (University of Bristol)
- Learning disability: care and support of people growing older (NICE)
- Advice and support guides including hospital passport (Mencap)
- Equal Healthcare is a basic right (Mencap)
- Last updated:
- 15 July 2020