BACKGROUND

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One of the objectives of the white paper Next steps to put People at the Heart of Care is to ensure that all individuals should have control over the care and support they require. Decision-making and feeling central to the decisions about care are key ingredients for a smooth transition process, however, there is limited evidence that has explored how people with a learning disability are supported at this time. In particular, there is little evidence that has explored the understanding and implementation of the 2005 Mental Capacity Act (MCA) and the 2019 Mental Capacity Act Amendment, where direct involvement is not possible and how professional stakeholders assess and use people’s will and preference to inform best interest decisions.  

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AIMS

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This project aims to explore: 

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• How adults with a moderate or severe learning disability and family carers are supported to make decisions about their care during a transition period? How will and preference are ascertained during the decision-making process?

• The understanding and implementation of the 2005 MCA and 2019 MCA amendment on transition to adult social care at around age 18.

• The needs of people making these transitions and the care and support they receive  (including both unpaid care and care services) and whether this matches expectations and wishes.

• Inequalities in care and support at transitions. 
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The study will explore three transition periods:

• Adults aged 17-18 who are receiving support through children’s services and now requiring support from adult services.

• Adults aged around 50 who are transferring from receiving informal family support to requiring formal support from adult social care. 

• Adults aged 65 and over who are currently receiving support through adult social care services and require a change in support or are transferred to services for older people (for example, transitioning to a nursing or residential care home or sheltered housing).

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METHODS

 

The methods include:

 

• A scoping review of the national literature to identify specific gaps in the evidence. 

• Engagement with public advisers and stakeholders to understand their priorities.

• Three focus groups involving professional stakeholders (six stakeholders in each group) working within the transition teams across social and health care who support adults with a moderate or severe learning disability who are transitioning between services. These may be representatives from learning disability specialist services, local authority and health transition teams, social care services, inpatient assessment and treatment or mental health services providing support for adults with learning disabilities. 

• Three focus groups involving adults with a moderate or severe learning disability who are transitioning between services and their family carers. Each focus group will involve adults with a learning disability and family carers (where relevant) for each transition period (outlined above).

• Analyses of local authority administrative data from LAs willing to share data and NHS data on community health services.