A health think tank recently published a damning report highlighting how fragmented services and poor communication are leaving people with learning disabilities missing out on potentially life-saving preventive care.
The Nuffield Trust’s independent report, Preventing people with learning disabilities from dying young, looks at preventive healthcare for people with learning disabilities and their ability to receive effective health and care services across five key areas: preventing obesity, cancer screening, annual health checks, addressing mental health issues and early diagnosis.
The report said that despite a long history of policies to improve the health and care of people with learning disabilities, there is a lack of access to effective healthcare, resulting in significant health inequalities that need to be addressed.
Key findings of the report include:
People with learning disabilities are much more likely to be obese than the general population, helping them to lose weight is complex and many mainstream weight loss groups are inaccessible to them. People with learning disabilities have significantly lower rates of participation in the NHS cancer screening programme, with barriers including a lack of reasonable accommodations and support to attend screening appointments. People with learning disabilities are also disproportionately affected by mental health problems, yet are less likely to receive appropriate care and more likely to be over-prescribed medication. Uptake of annual health checks is hindered by the fact that only around 26% of people with learning disabilities are on the GP learning disability register. There are also continuing issues of diagnosis concealment and people with learning disabilities not receiving early diagnosis, with cancer diagnoses often being made at a late stage.
Learning disability health care and obesity
The report found that people with learning disabilities are more likely to be obese, particularly in their teenage and young adulthood, with an average of 7.5% expected to be diagnosed with type 2 diabetes in 2022/23, compared with 5.1% of people without a learning disability.
The main reasons for the high rates of obesity in people with learning disabilities are a poor diet and very low levels of physical activity. Meanwhile, some people with learning disabilities have particular difficulties managing their weight because of conditions such as Prader-Willi syndrome or the medications they take. But whatever the underlying cause, eating a healthy diet and taking part in physical activity are the two most important ways of achieving and maintaining a healthy weight.
Many mainstream weight management programmes are not accessible to people with learning disabilities, so one of the report’s recommendations is to increase local authority provision of multi-component weight management programmes tailored for people with learning disabilities.
Public Health England states that there is evidence that multi-component weight management programmes combining dietary advice, physical activity and behaviour change can be adapted for people with learning disabilities. Randomised controlled trials are currently lacking, but some studies suggest that such programmes can be adapted in an accessible and effective way. Involving carers and supporters has been found to enable access to programmes and implementation of healthy lifestyle changes.
Cancer Screening Program
People with learning disabilities are often diagnosed with cancer at a later stage than the general population, and this later diagnosis is often made in an emergency in hospital. Furthermore, people with learning disabilities aged over 55 years old appear to develop cancer at a lower stage than the general population of the same age.
In 2022/23, just over half of people with a learning disability eligible for bowel cancer screening received the test, compared to two-thirds of those without a learning disability. There has also been a consistent 15 percentage point difference in breast cancer screening rates between people with and without a learning disability. Data from 2017-19 also shows that 35% of people with a learning disability who died from cancer had their cancer identified during an emergency visit in hospital.
Ensuring that people with learning disabilities can access the three national cancer screening programmes can be more difficult than the general public. Bowel cancer screening requires taking a stool sample and sending it to a laboratory using a home test kit, and many people with learning disabilities need support to do this. Cervical cancer screening can be difficult for people with limited capacity to understand and consent to a test. For people who do not have the capacity to consent, decisions must be made that take into account the person’s best interests. And breast cancer screening requires specialized community services to liaise between GP practices and screening services to ensure women’s needs are met.
The report states that cancer screening has not yet become widespread,
Screening is widespread and requires attention, and one major practical barrier is the lack of awareness and routine use of accessible materials, such as easy-to-read invitations to attend screening appointments.
For cancer screening, reasonable adjustments might include a longer consultation time or a pre-visit to check equipment, but adjustments to these services do not always occur when needed.
Mental health problems and learning disabilities
The report also found that people with learning disabilities have higher rates of mental health problems, but are less likely to be referred to talking therapies and their recovery rates are generally lower. More than 30,000 adults with a learning disability are taking psychotropic medication despite not being diagnosed with a prescribed condition.
Furthermore, socio-economic factors play a fundamental role in a person’s mental health status. People with learning disabilities have lower employment rates and are more likely to experience poverty and deprivation. Some people with learning disabilities may also lack social networks and have limited support, which can lead to social exclusion and loneliness. All these social risk factors are associated with poor mental health. People with learning disabilities may face abuse, neglect and discrimination throughout their lives, especially in childhood, and such experiences make them more susceptible to mental health problems.
Some people with learning disabilities may have more suitable alternatives for receiving mental health care. Specialist services such as Community Learning Disability Teams can provide support, but these also have access barriers and capacity is an issue.
People with learning disabilities may also benefit from other kinds of approaches to improving their mental health, such as creative therapies such as art therapy or music therapy.
A fundamental challenge in identifying mental health problems in people with learning disabilities is ‘diagnostic covertness’ – where mental health problems are mistakenly believed to be part of an individual’s learning disability and so go undiagnosed and unaddressed. This is a major barrier across the whole of the mental health pathway, from identifying a problem to accessing appropriate support and treatment.
Oliver McGowan As part of their mandatory training on learning disabilities and autism, health and social care staff receive training that includes how to avoid diagnostic shadowing, but this training is arguably insufficient to fully address concerns about the impact of diagnostic shadowing on individuals’ mental health care.
It is important to know the individual well and recognize changes in behavior that may result from increasing psychological difficulties. However, there is a high turnover rate among social care workers.
Annual health checks for people with learning disabilities
The think tank is calling for urgent action to make it easier for people with learning disabilities to access customised health checks. These are available to people aged 14 and over who are on their GP’s learning disability register. Currently, only around 26% of people with a learning disability in England are on the register – and for those from ethnic minority backgrounds, this proportion is likely to be even lower.
The report says the Integrated Care Board should organise targeted information campaigns to encourage people to join the Learning Disability Register, as there is evidence that testing can be beneficial in preventing the disease from occurring in the first place.
A health check should include a physical examination such as weight, height and blood pressure, and patients should be asked if they have any health concerns or worries about different body organs. Health professionals should also ask about health problems that are common in people with learning disabilities, such as epilepsy and constipation.
Reasonable adjustments should be considered and a review of the patient’s current medications should be carried out. The health check should also include a discussion of vaccinations, tests and health promotion and advice should be given on diet, exercise, smoking etc.
GP practices have a key role to play in enabling access to annual health checks and ensuring they effectively achieve their objectives. However, it is unclear how actively GP practices are encouraging people to attend health checks, and the extent to which they are facilitating follow-up and referrals.
Although there has been improvement in recent years in the uptake of annual health checks among people on the learning disability register, evidence shows that there is wide variation in the quality and content of assessments.
One of the key challenges in ensuring access to healthcare for people with learning disabilities is the falling number of staff specialising in supporting people with learning disabilities: the number of learning disability nurses employed by NHS England has fallen by 42% since 2010. This includes community learning disability nurses as well as nurses working in other settings such as hospitals.
There are other roles that have been developed for learning disability nurses, such as learning disability liaison nurses in acute care settings, but there is little consistency between these roles and wide regional variation.
Jessica Morris, fellow at the Nuffield Trust, said: “It is lamentable that so many people with learning disabilities are dying at a young age from preventable causes, but it doesn’t have to be this way.”
“To improve access to services for people with learning disabilities, access to much-needed preventive health services must no longer be fragmented and must be coordinated to ensure that services are available to the same people as everyone else. Ultimately, people with learning disabilities need access to timely and effective healthcare, with care well coordinated and signs and symptoms of illness detected early.”
“Our research focuses on some key areas of healthcare for people with learning disabilities, but there is still much more to be done to understand and change the unequal health outcomes they experience.”
The report’s authors consulted the following groups:
• Brandon Trust
• Commissioning and Inclusion in East Sussex County Council
• School of Public Health
• GP Clinic, St Albans
• Healthwatch England
• Investment Affairs Team, Sussex
• Langdon College, Edgware
• Learning Disability and Autism Liaison and Health Promotion Team;
East Sussex
• Learning Disabilities England
• Mencap
• NHS England