A health thinktank recently published a damning report highlighting how people with a learning disability are missing out on potentially life-saving preventive healthcare because of disjointed services and poor communication.
The independent report from the Nuffield Trust, Preventing people with a learning disability from dying too young, explores preventive healthcare for people with a learning disability and their ability to access effective health and care services across five key areas: prevention of obesity; cancer screening; annual health checks; addressing mental health problems; and early diagnosis.
It said that despite the long history of policies to improve the health and care of people with a learning disability, their lack of access to effective healthcare is resulting in large health inequalities that need to be addressed.
The main findings of the report were that:
The report found that people with a learning disability are more likely to be obese, particularly in teenage years and in young adulthood, and in 2022/23 an average of 7.5% had an active diagnosis of type 2 diabetes compared with 5.1% of people without a learning disability.
The main reasons for the higher obesity rate among people with a learning disability are poorly balanced diets and very low levels of physical activity. Meanwhile, some people with a learning disability particularly struggle with weight control due to conditions such as Prader-Willi Syndrome or because of medications they take. But whatever the underlying cause, eating healthily and taking part in physical activity are the two most important ways to achieve and maintain a healthy weight.
Many mainstream weight management programmes are inaccessible for people with a learning disability. Therefore, one of the report’s recommendations is that there is increased local authority provision of multi-component weight management programmes tailored for people with a learning disability.
Public Health England has stated that there is some evidence that multicomponent weight management programmes – which combine dietary advice, physical activity and behaviour change – can be adapted for people with a learning disability. There is currently a lack of randomised controlled trials, but some studies suggest that such programmes can be adapted in ways that are accessible and effective. Involving carers or supporters has been shown to help enable access to programmes and the implementation of healthy lifestyle changes.
Cancer is also often diagnosed at a later stage for people with a learning disability than for the rest of the population. These late diagnoses are often made in an emergency at the hospital. In addition, cancer rates seem to be lower in people with a learning disability aged 55 and over than in the rest of the population of the same age.
In 2022/23, just over half of people with a learning disability who were eligible for bowel cancer screening had the test compared to two-thirds of eligible people without a learning disability. There has also consistently been a 15-percentage point difference in breast cancer screening rates between people with a learning disability and the rest of the population. Data from 2017-19 also shows that 35% of individuals with a learning disability who died with cancer had their cancer identified at an emergency presentation at hospital.
Enabling people with a learning disability to access the three national cancer screening programmes can be more difficult than for the general population. Bowel cancer screening requires individuals to produce a stool sample, use a home test kit and send it to a lab, which many people with a learning disability would need support to do. Cervical cancer screening is difficult for people whose capacity to understand and consent to the examination is limited – for people who lack the capacity to consent, a decision will need to be made in the person’s best interests. And breast cancer screening often requires specialist local services to liaise between GP practices and screening services to ensure the woman’s needs are met.
The report said that a lack of progress on cancer screening uptake suggests that barriers to
screening are widespread and warrant attention. One major practical barrier is the lack of awareness and routine use of accessible materials, such as easy-read invitations to attend screening appointments.
With cancer screening, reasonable adjustments could include longer appointments or pre-visits to look at the equipment, but these service adaptations are not always happening when needed.
The report also found that despite a higher prevalence of mental health problems in people with a learning disability, they are less likely to be referred for talking therapies and they generally have poorer recovery rates. More than 30,000 adults with a learning disability are also taking psychotropic medicines when they do not have a diagnosis of the conditions the medicines are prescribed for.
In addition, socioeconomic factors play a fundamental role in a person’s mental health status. People with a learning disability have lower levels of employment and are more likely to experience deprivation and poverty. And some people with a learning disability may lack social networks and receive limited support, which can lead to social exclusion and loneliness. All of these social risk factors are associated with poorer mental health. People with a learning disability may also face abuse, neglect and discrimination throughout their lives, but particularly in the early years, and such experiences will make them more vulnerable to mental health problems.
There are alternative routes to accessing mental health care that might be more appropriate for some people with a learning disability. Specialist services such as community learning disability teams can provide support, although there are access barriers for these services too and capacity is an issue.
People with a learning disability may also benefit from other kinds of approaches to improve their mental health, such as creative therapies, including art and music therapy.
A fundamental challenge in identifying mental health problems in the learning disability population is ‘diagnostic overshadowing’, whereby mental health problems are mistaken as just being part of an individual’s learning disability, thereby leaving them undiagnosed and unaddressed. It is a significant barrier across the mental health pathway, from identifying a concern, to accessing the appropriate support and treatment.
As part of Oliver McGowan Mandatory Training on Learning Disability and Autism, health and social care staff undergo training including how to avoid diagnostic overshadowing. However, this training is perhaps not sufficient to fully address concerns about the impact that diagnostic overshadowing can have on a person’s mental health care.
Knowing the individual well and recognising changes in behaviour that could be attributed to growing psychological difficulties are important. However, the high turnover in the social care workforce
The thinktank is calling for immediate action to make it easier for people with a learning disability to get tailored health checks. These are available to people aged 14 or over who are on their GP practice’s learning disability register. Currently, only approximately 26% of people with a learning disability in England are on the register. This proportion is likely to be even lower for people from minority ethnic backgrounds.
It says that integrated care boards should organise targeted information campaigns to encourage people to join the learning disability register as evidence suggests that the checks can be beneficial for preventing disease occurring in the first place.
The health check should include a physical check-up, including weight, height and blood pressure, and patients should be asked if they have any health concerns or worries relating to different bodily systems. The health professional should ask about health problems that can be more common in people with a learning disability, such as epilepsy or constipation.
Reasonable adjustments should be considered and there should be a review of medications that the patient is currently taking. The health check should also include discussions about immunisation, screening and health promotion, with advice given about diet, exercise, smoking and more.
GP practices have an important role to play in enabling access to annual health checks and ensuring that they are effective in meeting their aims. But it is not clear how proactive GP practices are at reaching out to people to encourage attendance at health checks and to what extent they facilitate follow-ups or referrals.
Evidence suggests that although there has been an improvement in the uptake of annual health checks in recent years for people who are on the learning disability register, there is considerable variation in the quality of the checks and what they include.
One key challenge in enabling people with a learning disability to access healthcare relates to the declining number of staff who specialise in supporting people with a learning disability. The number of learning disability nurses employed by NHS England has decreased by 42% since 2010. This includes community learning disability nurses as well as nurses who work across other settings such as hospitals.
There are other roles that have developed for learning disability nurses too, for example learning disability liaison nurses in acute care settings. However, there is little consistency between these roles as well as strong regional differences.
Nuffield Trust Fellow Jessica Morris said: “It’s appalling that so many people with a learning disability are dying too young and from preventable causes, but it doesn’t have to be this way.
“We will not begin to improve access to services for people with a learning disability unless access to much-needed preventive health services becomes less disjointed and adjustments are made to make services as accessible as they are for everyone else. Ultimately, people with a learning disability need access to timely and effective health care, where care is well coordinated, and signs and symptoms of illness are picked up early.
“While our research has focused on some major areas of health care for people with learning disabilities, there is much more work to be done to understand and change the inequitable health outcomes they are experiencing.”
The authors of the report consulted the following groups:
• Brandon Trust
• Commissioning and Inclusion, East Sussex County Council
• Faculty of Public Health
• GP practice, St Albans
• Healthwatch England
• Investment Matters Team, Sussex
• Langdon College, Edgware
• Learning Disabilities and Autism Liaison and Health Facilitation Team,
East Sussex
• Learning Disability England
• Mencap
• NHS England
