PMLD (Profound and multiple learning disabilities)

This section is aimed at professionals who work with or support people with profound and multiple learning disabilities (PMLD).

It outlines key issues and provides good practice information for anyone working with or supporting people with PMLD.

Latest news

'Raising our sights: services for adults with profound intellectual and multiple disabilities' was launched in March 2010. The report has been written by Professor Jim Mansell and was commissioned as part of the Valuing People Now delivery plan.

The report identifies what is important when planning and delivering services for people with the most complex needs and has a number of recommendations for national and local government. Read the report.

Key issues

People with PMLD are frequently excluded and remain some of the most disadvantaged people within our society. For this to change there needs to be better understanding of their distinctive needs. The numbers and needs of people with PMLD also need to be understood so that there can be better planning of services.

People with PMLD have specific communication needs and many have complex health needs. We need to meet these needs if people with PMLD are to be included like everyone else. This requires investment in services and training for professionals working with people with PMLD, such as training in how to communicate with people with PMLD.

People with PMLD are not properly represented in self advocacy groups and groups involved in policy-making. It is important that the needs of people with PMLD are represented in these groups so that decision makers understand what their needs are and plan appropriate services.

People with PMLD face many of the same issues as other people with a learning disability but to a greater extent. Read the PMLD Network response to the Valuing People Now consultation to find out more about the issues facing people with PMLD and what needs to change to make things better.

Legislation

There is some useful legislation which can inform the work of professionals who work with people with PMLD:

• Mental Capacity Act 2005 - this puts into law the rights of people who lack capacity to make their own decisions, as well as those who can make their own decisions. It is a useful tool which can be used to empower people with PMLD if it is used properly. For more information about the Mental Capacity Act, visit our campaigns section. 
• Disability Discrimination Act (DDA) 2005 - by amending the DDA 1995, rights for disabled people have been substantially improved and extended.
• Human Rights Act 1998 - people with PMLD have the same human rights as everyone else.

Current debates

New initiatives like individual budgets have the power to transform lives. However, the question is will they work well for all people - including people with PMLD who have the most complex needs? If they are going to work for people with PMLD, they need to be big enough to give people with PMLD real choice and control.

We are concerned that because of the funding crisis and the enormous pressure on social services the Government is going to avoid committing to expensive packages of support, which people with PMLD will often need, and only provide care in a crisis. We are lobbying to make sure this doesn't happen. Things need to get better for people with PMLD not worse.

We respond to key consultations about issues affecting the lives of people with PMLD. Read our consultation responses.

Research

There is very little data on the population of people with PMLD. However figures that do exist demonstrate a rise in the numbers of people with PMLD, and show that their needs are becoming more complex. Better data is crucial to inform planning to ensure that all people with PMLD and their families are able to access appropriate support and services.

• The government recently commissioned research into estimated future numbers of people with PMLD, which showed that there is sustained and accelerating growth in the number of adults with PMLD in England. This research is a good start. It gives local areas an idea of the numbers of people with PMLD coming through the system. However, local areas have got to build on this and do a proper audit of numbers and needs.
• A number of useful research papers around PMLD are listed in the resources section of the PMLD Network website.
• In 2004, Mencap commissioned a report about research into the lives of people with PMLD. This paper gives a useful overview of some of the key research in this area. For more information, download 'People with profound and multiple learning disabilities: A review of research about their lives' by Dr Steven Carnaby (PDF).

Good practice

Mencap and the British Institute of Learning Disabilities (BILD) are currently running a project called 'Involve Me', which is sponsored by the Renton Foundation. The project is about how to creatively involve people with PMLD in decision making. Find out more about Involve Me. 

 One of the creative approaches being used in the Involve Me project is 'Getting to Know You' (peer advocacy). This is about self-advocates with a learning disability getting to know and speaking up for people with PMLD. This is a way to make sure that people with PMLD, who don't use formal communication, can get their 'voice' heard. Find out more about  'Getting to know you'.

Mencap and the PMLD Network have also produced a top tips guide for partnership boards about how to include people with PMLD. Read the top tips guide.

Mencap's approach

Through developing partnerships and sharing information within and beyond Mencap, we want to increase awareness and understanding about what it means to have PMLD and enable professionals working in the field to work confidently and creatively with people with PMLD.

We are currently providing support to many people with PMLD, and through our direct support services we are supporting people to achieve the things that are important to them in a variety of settings. We know that to do this our staff need the support of high quality training, enabling them to understand the issues for, and to work well with, people with PMLD.

For more information about Mencap's direct support, visit our services section.

How we work with others

• We are part of the PMLD Network which is a group of people and organisations who are committed to improving the lives of people with PMLD. The network brings together expertise in this field and campaigns and shares information. It also runs an email forum where professionals, parents and carers can debate issues and share information. For more information, visit the PMLD Network website.
• We also work with other organisations to campaign for the rights of people with PMLD. For example, we are part of the Changing Places consortium campaigning for suitable toilets for people with PMLD to be in all big public places. Fore more information, please visit the Changing Places website.
• Find out about the work Mencap is doing to campaign for the rights of people with PMLD.

Useful resources

• Meet the People: a CD-Rom introducing you to six people who have PMLD.
• Top tips guide for partnership boards: how to include people with PMLD.
• In the Moment: a DVD about the arts and people with PMLD.
• See the end of this section for a full list of further reading, resources, factsheets and training. You can also find more resources on the PMLD Network website.

We want to continue to develop our resources and we need your expertise and help to do this. Please tell us about your resources or how we can improve ours, and let us know about the work you are doing so we can share your good practice with others and see how we can work together. Please contact:

The campaigns team
Email: campaigns@mencap.org.uk