Lambeth PMLD report: understanding the lives and needs of people with profound and multiple learning disabilities in Lambeth

October 2010

Mencap has just launched a report exploring the numbers and needs of people with PMLD in Lambeth. It was a collaborative project, with family carers in Lambeth, Lambeth Council, NHS Lambeth, Lambeth Mencap and ‘I Count’ Register Services.

The report will not only help Lambeth Council and NHS Lambeth better plan for this part of the population but we hope that the project and 31 recommendations that have come out of it will help other local areas to focus on the needs of people with profound and multiple learning disabilities and ensure their plans for people with a learning disability are inclusive of those with the most complex needs.

Focusing on the needs of people with PMLD so that they don’t miss out is something that Professor Mansell said that all local areas should be doing in his report Raising our Sights: services for people with profound intellectual and multiple disabilities, which was commissioned as part of the Valuing People Now delivery plan:

"Local authority social care services, together with their education and health partners, should keep up to date information about the numbers, needs and circumstances of people with PMLD in their area currently and projected future to enable effective planning of services."

Findings

The findings in the Lambeth PMLD report reflect the national picture of what life is like for people with PMLD.

A priority to come out of the project is to ensure that family carers who are caring for someone with PMLD in the family home in Lambeth get the support they need - help from support staff with the right skills, reliable, high quality respite, better information and advice about local services and how to manage direct payments and individual budgets. Findings indicated that people with PMLD living in the family were less likely to have a person centred plan or health action plan which suggests family carers need more support with these.

How the project was done

The well maintained learning disability register in Lambeth helped us identify the population of people with PMLD in this area. Criteria were developed using the PMLD Network definition of profound and multiple learning disabilities and applied to the register information to identify who was likely to have PMLD. 81 people were identified. This fitted in with the local estimate given in Emerson’s report Estimating future numbers of people with profound and multiple learning disabilities in England. Lambeth will continue to be able to use the criteria developed to identify people with PMLD on the register and analyse their needs, and use this to better plan for people with PMLD.

In addition to information from the register, we surveyed and interviewed family carers and support staff for the project. This enabled us to get a picture of what life was like for people with PMLD in Lambeth.

Beverley Dawkins OBE, national officer for profound and multiple learning disabilities at Mencap and Chair of the PMLD Network said:

“We are delighted to be part of this ‘good practice’ project – a local area finding out about its PMLD population. We hope it will encourage other local areas to do the same. It will also help us increase our understanding of the issues we are campaigning on nationally.”

The project was initiated by family carer representatives on the Lambeth learning disability partnership board.

Further information

Read the Lambeth PMLD report – full version and easy read.

For more information about the project contact the Mencap campaigns team by email: campaigns@mencap.org.uk or telephone: 020 7696 6019.