People with learning disabilities have a much greater propensity to develop health problems (both physical and mental) when compared with the general population.
Research suggests people with learning disabilities are 58 times more likely to die before the age of 50. Respiratory and heart diseases are the leading causes of death for this group, and they are also more likely to have diabetes, sensory impairments, mental health problems or epilepsy.
Findings from the 2013 Confidential Inquiry into premature deaths of people with learning disabilities found that men die 13 years sooner than men without a learning disability, and women with learning disabilities tend to die 20 years sooner than those without.
In addition to this, they are likely to find it more difficult than others to communicate their symptoms. As a result it is more difficult for health-care workers to identify health needs among people with learning disabilities, thus leaving some problems unrecognised. It has also been found that people with learning disabilities have reduced access to generic preventative screening and health promotion procedures, such as breast or cervical screening.
Health action plans
It has been recommended by the Government that a Health Action Plan be developed for people with learning disabilities. This holds information about the person’s health needs, the professionals who support those needs, and their various appointments. The plan is based on a full health check. A person with a learning disability can get a Health Action Plan through a health facilitator to support them to develop it, act on it and keep it under review.
The health facilitator could be anyone supporting a person with a learning disability, including a member of the family, a support worker or a member of the Community Learning Disability Team. The Health Action Plan should cover the full range of services and supports the person might need, including medication taken, dentistry, eye care, speech therapy, occupational therapy or physiotherapy.
From the age of 18, people with learning disabilities are expected to receive annual health checks from their GPs under the Directed Enhanced Service (DES). The 2011 Government Green Paper ‘Support and aspiration: A new approach to special educational needs and disability’ (PDF) proposes that annual health checks should start from the age of 16.
This documents important information about someone with a learning disability, and is written mainly for the use of the staff within the hospitals. It will contain information on, for example, how best to communicate with the person, how he or she shows pain, and the best way to give medication. Many Community Learning Disability Teams will have nurses available to support people in putting these together.
Making reasonable adjustments
Health services are required to make reasonable adjustments to ensure that they are able to meet the health needs of people with learning disabilities. This can include making information easier to read, using texts or making telephone calls to remind people to attend appointments, and allowing more time for consultations.
NHS Continuing Healthcare
Some people with complex health needs are funded through NHS Continuing Healthcare for adults. This is funding for a complete package of health and social care for people whose ‘primary need’ is regarded as a health need.
It is therefore likely that a person with learning disabilities will have an assessment of their eligibility. It is important for families to be fully informed and involved in this assessment and planning.
The Foundation hosts a selection of web-based forums where you can ask for help and advice from a community of people who share an interest and concern in learning disabilities. Find out more, or register to become a forum member.
All of us experience challenges to our emotional well-being at some stage in our lives, and children and adults with learning disabilities are not exempt from this. Research studies demonstrate that an estimated 25-40% of people with learning disabilities have mental health problems. Evidence compiled by the Public Health Observatory for Learning Disability cites the following:
- A prevalence rate of 3% for schizophrenia (three times greater than for the general population), with higher rates for people of South Asian origin
- Levels of anxiety and depression as being similar to those of the general population (though higher in people with Down syndrome).
For children and young people the same source shows the prevalence rate of a diagnosable psychiatric disorder to be 36% of children and adolescents with learning disabilities, as opposed to 8% of those who did not have a learning disability.
These young people were also 33 times more likely to be on the autistic spectrum, and were much more likely to have emotional and conduct disorders. Children and young people with learning disabilities are much more likely to live in poverty, to have few friends and to have additional long term health problems and disabilities such as epilepsy and sensory impairments. All of these factors are positively associated with mental health problems.
These problems may be worsened for those with greater support needs, particularly if they are unable to communicate about their feelings or communicate their distress (it may result in this behaviour mistakenly being seen to be challenging).
As a result, changes in emotional well-being in children and adults with high support needs may easily be overlooked by those who care for them, particularly if they have high levels of medical needs.
Research by the Foundation for People with Learning Disabilities (‘Making Us Count’) clearly identified that people with profound and multiple learning disabilities do experience mental health problems, often for reasons similar to those of the general population.
However, identifying the signs and symptoms that indicate changes in the emotional and mental well-being of people with profound and multiple learning disabilities takes longer to assess, and it is often the families who are best placed to identify such changes.
- Some key factors that often contribute to a change in emotional well-being include:
- physical health
- loss and bereavement (this could be a change of support or bus driver who takes the child to school, as well as the loss of a family member)
- transition to adulthood