Margaret Lally is a former Director for the UK at the British Red Cross and is the Committee Chair for the new NICE guideline: Care and support of people growing older with learning disabilities.
She has had extensive experience in supporting people with learning disabilities. Here she discusses the key recommendations within the NICE guideline and shares her feelings about being involved in its development.
Variations in care for people with learning disabilities persist across the country. Some services are good at getting it right for people, and others don’t always provide the necessary support.
There are approximately 1.5 million people in the UK living with a learning disability and more of them are living longer. It’s so important that we make sure services are listening to them and responding to their needs. This is the challenge the new NICE guideline seeks to address.
The guideline has been produced to support adults with learning disabilities to access the services they need as they grow older.
It focuses on the importance of identifying their changing needs, planning for the future, and delivering person-centred services, as well as supporting their families and carers.
Being appointed Chair of the guideline gave me the perfect opportunity to share my experience and ensure that its recommendations tackled the real issues that people with learning disabilities are experiencing.
I felt privileged to be part of a committee with such a committed and knowledgeable group of people. We were particularly lucky to have 3 experts by experience to help us.
One area we explored was the problems that people with learning disabilities have in expressing their needs and being heard, particularly as they grow older. Sometimes what can appear to practitioners to be challenging behaviour is that person saying they are in pain or distressed by the changes in what they are able to do.
Therefore, the NICE guideline recommends that practitioners make a real effort to understand the person with a learning disability and address their changing needs and capabilities.
One way of doing this is to support them to have regular health checks and ensure that action is taken on any conditions identified; thereby helping them maintain health and independence.
Clear communication is so important when supporting older people with learning disabilities. We know that providing clear and regular information is essential to ensure appropriate support, as well as preventing late diagnosis of age-related conditions.
The NICE guideline recommends that practitioners provide older people with learning disabilities with information in an accessible format of their choice. They must also be consulted about and supported to make all the decisions they can about their care.
Another key part of the guideline for me is its focus on providing accessible local services and organising care around the needs of people with learning disabilities growing older, as well as providing proper support for their families and carers.
For example, commissioners and service providers should provide age appropriate day opportunities and help people with learning difficulties stay in touch with their friends as well as make new ones. Family and carers should have access to respite care and support groups.
Planning for the future is really important. Many people with learning disabilities live with their families who themselves are getting older and may not be always able to continue to provide care. This can led to the person being moved in a crisis.
We believe this can be avoided if the person with learning disabilities and their carers are supported to develop a plan for the future. It is best if someone who knows the person really well can help them draw up the care plan which should includes how and who they want to live their life with in the future.
There is no one size fits all solution. For care and support to be truly effective, it must be person-centred, bespoke and in tune with how people receiving care want to live their lives, especially as their needs change when they do grow older.
NICE has also produced an easy read version of the guideline so that people with learning disabilities, their families, friends and carers can understand what help and support they could receive and how their needs should be met.