If the death of a parent who is their carer is sudden and no future plans are made, the person may be placed in a residential home which may be inappropriate, NICE says.
Margaret Lally, chair of the guideline committee, said: “The needs, wishes and capabilities of people with learning disabilities will change as they age – as they do for everyone. The death of a parent or moving to a new home, for example, can have a significant impact on the health and
Future plans should include a person’s housing needs, their support network and what to do in emergencies. It should be reviewed every year or when circumstances change, the draft guidance recommends.
The draft guidance, once final, will advise providers and commissioners on how to support people to stay healthy and active, and how to access healthcare services, such as routine screening.
This could include hospitals planning pre-visits for appointments or hospital stays and arranging for people to have a ‘hospital passport’.
A hospital passport could contain information about their likes and dislikes, for example, what food they prefer to eat, to help staff make them feel as comfortable as possible, the draft guidance says.
Professor Gillian Leng, deputy chief executive and director of health and social care at NICE, said: “People with learning disabilities are living longer and reaching old age. This means that services have had to develop and adapt to cater to their needs. Our guidance will help providers and commissioners support people with learning disabilities to achieve good health and be able to spend time the way they want.”
The draft guidance also highlights the increased risk of dementia in some older people learning disabilities, for example in people with Down’s syndrome, and how health professionals should distinguish symptoms from those associated with their learning disability or any mental health problems.
Professionals should not presume that a change in a person’s health, particularly as they age, is related their learning disability, the draft guidance adds.
Consultation on the draft guideline will run until 15 December. Stakeholders and members of the public are invited to comment on the draft recommendations.