A list of what we are doing
Here is a list about what the PMLD Network is doing to ensure people with profound and multiple learning disabilities (PMLD) are included, heard, considered, understood and get appropriate healthcare:
A right to be Included
- The PMLD Network have launched a 'top tips' guide
to encourage partnership boards to include people with profound and multiple learning disabilities. - The Changing Places Consortium is campaigning for Changing Places toilets - toilets with changing bench, hoist and plenty of space to installed in all big public places.
- The Foundation for People with Learning Disabilities (FPLD)'s 3-year Life in the Community project has worked to develop more opportunities for people with high support needs in their local communities. Find out the key messages and resources from the project
- BILD is working with advocacy organisations in the Midlands and the South East to develop links with people's local communities. The lessons learnt for people with PMLD will be shared.
A right to be heard
Sharing good practice about involving people with PMLD in decision making
- People with learning disabilities face many barriers in being able to complain about the services they receive. The Hearing from the Seldom Heard project funded by the Department of Health and undertaken by BILD aimed to look at the how to overcome barriers and create listening cultures within organisations to hear from those who are seldom heard. The project has resulted in a resource pack.
- Mencap and BILD’s Involve Me project will identify and showcase creative ways of involving people with profound and multiple learning disabilities (PMLD) in consultation and decision-making processes.
- The Choice Initiative by the Foundation for People with Learning Disabilities (FPLD) explored how people with severe, profound and multiple learning disabilities can express choices and take more control over their own lives.
- Mencap is working with others to collect good practice about involving and including people with PMLD.
Increasing advocacy provision
- Scope's Voices Through Advocacy project is running free Non Instructed advocacy training for any advocate in England and Wales.
- Mencap's Getting to Know You project trains self advocates with a learning disability to speak up for people with PMLD.
- BILD is responsible for managing the advocacy grant programmes in England and Wales, with a current focus on enabling advocacy support for individuals with PMLD.
Working with family carers
- The Foundation for People with Learning Disabilities (FPLD)'s Wellbeing project has highlighted key areas in which information and training for family carers and care staff could enable them to better support people with PMLD.
- BILD's Quality Network involves people with PMLD and their families in reviewing the support they receive from service organisations as part of a process that looks at the outcomes of support on the quality of peoples' lives.
Explaining how the Mental Capacity Act can be used to support people with PMLD
- BILD is ensuring that information about the Mental Capacity Act 2005 is widely available via factsheets, seminars, conferences and events.
- BILD has developed training opportunities for staff to learn how to support people with PMLD in making choices and decisions in line with the Mental Capacity Act 2005.
A right to be considered
A right to be understood
- Telling the government how children and young people with PMLD communicate so they can meet their needs.
- Mencap has produced a resource to help people understand the needs of people with PMLD. It is a CD-Rom called Meet the People.
- BILD provides website information, training and staff development to enable staff and families to understand and respond positively to people with PMLD who present challenging behaviour.
A right to appropriate healthcare
- Mencap's Death by Indifference campaign report has shown that people with a learning disability are not getting the healthcare and treatment that they need. It has triggered an Independent Inquiry.
- The Foundation for People with Learning Disabilities (FPLD)'s Healthy Lives project aimed to improve people with learning disabilities health by incorporating and connecting person centred planning and health action planning into people's lives.
