There is evidence that the people with learning disabilities have a higher prevalence of mental health issues than those in the general population.
The rate of dementia is higher and people with Down syndrome are at particularly high risk of developing dementia, with a much earlier age of onset.
The most recent guide for commissioners identifies this higher prevalence. It pointed out thought that there was not a universally agreed commissioning model, but that commissioners in England should ensure a safe, appropriate, high quality service.
The Foundation for People with Learning Disabilities has been offering guidance and information on mental health needs in a recent series of publications. The most recent of these is a report designed to help promote positive mental health by offering information, case studies and real-life experiences and to share strategies for enhancing positive mental health.
What the researchers did was to work with an established reference group of people with learning disabilities who also experienced mental ill health to gather information.
They carried out a literature search and conducted a national survey to gather information on the current experiences of people with learning disabilities, their families, friends and staff when accessing support for their mental wellbeing.
What they found was that people with learning disabilities said that:
- people did not see them – they just saw their learning disability
- information provided was not accessible or in a format they could understand
- when they felt down, they were not believed, listened to or supported
- they wanted more control around their mental health
- they had suggestions for what might help, such as a diary and information to explain what was happening to them, making it easier to talk to staff and tell the GP how they were feeling.
Family members and friends said that:
- the biggest barrier to support was getting a GP to believe them or refer them to a specialist
- long waits were detrimental to their son/daughter’s wellbeing
- once psychological support was received, they found it valuable
Professionals said that:
- more needed to be done to support the mental health needs of people with learning disabilities
- GPs were key players and needed support in accessing mental health support
- mental health services needed to make reasonable adjustments to ensure access
- support during treatment and aftercare was crucial
- better and more joint work was needed between mental health services.
There were a number of recommendations:
- Commissioners should ensure service providers complied with the Equality Act and the Mental Capacity Act through regular audits shared with the Health and Wellbeing Boards and Clinical Commissioning Groups (CCGs).
- CCGs should appoint a specialist learning disabilities clinical lead
- Compulsory modules on learning disability should be introduced for all health professionals, with direct experience of working with people with learning disabilities, and teaching offered by people with learning disabilities themselves
- GP practices should ensure they have identified all people with learning disabilities on their register and offer appropriate health checks
- NHS England should audit the roll-out of inclusive national mental health programmes such as Improving Access to Psychological Therapies (IAPT), dementia screening and information prescriptions
- Service providers should implement the Michael report recommendations
- Directors of social services to drive forward personalised support in appropriate community in accordance with the Winterbourne action plan
- NHS England to prepare detailed plans regarding appropriate adjustments, to support people with learning disabilities or autism to fully access a service.
- The Care Quality Commission (CQC) should require questions about reasonable adjustments and barriers to the provision of inclusive services to be included in all inspections (not just in inspections of specialist services)
Much has been written about inadequate disability awareness training for staff working in the NHS in relation to the support of people’s physical health and this report should add to the awareness of the need to also consider ways in which the mental health needs of people with learning disabilities can be better met.
Feeling Down, Improving the mental health of people with learning disabilities, Koulla Burke C, Foundation for People with Learning Disabilities