Homes and services for people with learning disabilities should be close to their families, new guidance says
Local councils and health bodies need to work together to make community support near loved ones a reality
Progress on providing community services for people with learning disabilities has been slow but a new service design and delivery model aims to make that become a reality
Approximately 1.2 million people in England have a learning disability and it is estimated that up to 17% display behaviour that challenges. The exposure of widespread abuse at Winterbourne View hospital in 2011 led to a review of care prompting the Transforming Care programme to move people from inpatient units to more personalised services based in communities.
NHS England has set out the range of support which should be available in communities by next March. But, charities including Mencap and the National Autistic Society have criticised slow progress to close inpatient beds and provide community services.
Homes and services for people with learning disabilities should be close to their families and communities wherever possible, says the National Institute for Health and Care Excellence (NICE).
NICE is urging councils and health bodies to work together so that this cohort can access services and staff with the right skills, so they do not need to move away for care or treatment. The new guidance on service design and delivery is intended to support the Transforming Care programme with evidence-based recommendations.
There should be a range of housing options for people with learning disabilities and challenging behaviour – including the choice to live alone with appropriate support if they prefer – and it is suitable. For those who cannot or do not want to live alone, the option of living with a small number of people in shared housing that has a small-scale domestic feel should be offered. People should be involved in choosing how many people, and who, they live with.
Specialist assessment, behavioural and crisis support for children and adults should be available locally. Intensive support during a crisis should focus on keeping people at home and provide face-to-face support within four hours, if needed.
At least half of all adults with a learning disability live in their family home.
The guideline emphasises the need to provide families with support as early as possible. This includes providing practical advice on how to care for their loved one, access to short breaks away from their caring duties and details of available local services.
The guideline states that people should only be admitted to hospital if assessment and care planning show that their needs cannot be met safely in the community, and all possibilities for doing so have been considered and exhausted.
Implications for nurses
- The person with a learning disability and their families should, if possible, be involved in decisions which affect them.
- Each person should have a singled named worker, such as a social worker or community nurse, who can have regular meetings with them to discuss their needs.
- Practitioners should get to know the person they support and find out what they want from their lives, not just what they want from services.
- If someone does need hospital care, as soon as they are admitted the hospital and community learning disability team should work together to develop a discharge plan.
Simon Jones, lead behavioural practitioner for Consensus Support and RCN learning disability forum chair
‘This is a really important set of guidelines as we still have a lot of people, approximately 2,500, stuck in inpatient care. They are ready for discharge, but not able to move into the community as they cannot find suitable places to live.
‘This is having a huge impact on people’s lives and it is important that the right, robust services are made available to meet their needs.
'It is about commissioning and partnership working between NHS community teams and independent providers, and this has long been a stumbling block. When people move out of an inpatient unit they need to be given a lot of support that can then be reduced.
'Instead they are given too little, and when a move fails that person is unfairly stigmatised as unsupportable in the community.’
Find out more
- Kendall-Raynor P (2015) Nurses crucial to success of Transforming Care programme. Learning Disability Practice.
- Local Government Association, Directors of Adult Social Services, NHS England (2015) Supporting People with a Learning Disability and/or Autism who Display Behaviour that Challenges, including those with a Mental Health Condition.
- National Institute for Health and Care Excellence (2018) Learning Disabilities and Behaviour that Challenges: Service Design and Delivery. National Guideline 93.
- NHS England (2018) Homes Not Hospitals
- Webber L, Major K, Condello C et al (2017) Providing positive behaviour support to improve a client’s quality of life. Learning Disability Practice.