Care and support for older people with learning disabilities NICE guideline

What is this guideline for? To make sure people with learning disabilities get the right support as they grow older. To make sure staff think about what each person wants and needs. They should not just look at their age or learning disability.

What do you think? NICE wants to know what you think about what this guideline says.

What the guideline covers Choice and control slides 5-9 Support from health services slides 20-26 Local services slides 10-11 Care for health problems slides 27-31 Changing needs slides 12-15 Planning end of life care slides 32-33 Planning support slides 16-19 Staff skills slide 34 How to use this slide set This slide set explains NICE’s guideline on care and support for older people with learning disabilities. It is an accessible version and can be used by anyone who wants to comment on this guideline. In slideshow format you can click on each coloured box on this summary slide to link to different sections of the guideline. The last slide in each section has a home button to return to this summary. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say?

5. Choice and control Make sure older people with learning disabilities can use the same services as everyone else. Services mean things like health, housing and social care. It also means getting support as a carer if they look after a family member. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendation 1.1.1, 1.1.3, 1.1.4

6. Choice and control Give people clear information about services. Tell them what different services are for and how to use them. Make sure they understand this information. Provide an independent advocate. (An advocate helps people speak up.)    Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.1.5, 1.1.6

7. Choice and control Support people to communicate in the way they prefer. A person’s communication needs might change as they get older. Ask people regularly if they need more support. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendation 1.1.5, 1.1.7

8. Choice and control Support people to make their own decisions. Make sure they always have a say, even if they need help to make decisions. Don’t put the views of family, carers or others before the views of the person themselves. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendation 1.1.8, 1.1.11

9. Choice and control Involve families and carers, if people agree. Involve everyone in the person’s support network. (The support network is everyone who helps the person, like friends, family and carers.) Check regularly if families and carers are happy and able to give this support. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.1.9, 1.1.10, 1.1.12

10. Local services Find out what services people with learning disabilities need in their local area. Think about what they need, now and when they are older. Provide these services close to home and help people use them. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: section 1.2

11. Local services What people need Support to live where they choose Help to use health services One person to talk to for all advice Help for families, like respite breaks Ways to stay active in the community Ways to meet people and make friends Help to get around Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: section 1.2

12. Changing needs As someone gets older their needs might change. Offer people regular assessments of their care and support. (An assessment means finding out what people need.) Assessments should be done by staff who know the person well. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.3.2 and 1.3.3, 1.4.1

13. Changing needs Staff doing assessments should ask if the person cares for other family members. Offer a carer’s assessment to support them as a carer. Think about how caring will affect them when they are older. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.3.6 and 1.4.7

14. Changing needs Staff doing assessments should look out for changes as people get older. Changes could be due to a health problem, not because of their learning disability. They could be feelings, like being worried or sad. They could be physical problems like pain or losing weight. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.3.2 and 1.3.3

15. Changing needs Staff doing assessments should find out what help families and carers need to support the person. Offer them a carer’s assessment. Ask if they need more help at least once a year or when something new happens. Tell them how to register as a carer. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.3.6 to 1.3.10

16. Planning support Staff who know the person well should help them write a plan. Plan what support the person and their family need now. Also write a plan for the future. Ask if they are still happy with the plan once a year or when something new happens. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.4.1, 1.4.3, 1.4.5 and 1.4.6

17. Planning support What to put in the plan Where people might want to live Who will support them Who will help them make decisions Who will help them with money Who to talk to if something goes wrong Decisions about care near the end of their life Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.4.7

18. Planning support Help people stay in their home as they get older if they want to. Put new equipment in their house if they need it, like a lift or support phone. If people live at home with help from support staff, check at least once a year if their needs have changed. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.4.10, 1.4.11

19. Planning support If a person wants to move to residential care help them plan this early. Involve family or an advocate. Help the person visit the place before they move there. Plan how they can keep in touch with their support network and make new friends. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.4.11, 1.4.12, 1.4.13

20. Support from health services Give people longer visits with the doctor. Someone who knows the person well should go with them. If the person needs to be examined try to do it somewhere they know. Make sure the person always knows what is happening. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.1, 1.5.2, 1.5.3, 1.5.4

21. Support from health services Try to make sure people see a doctor or nurse they know. One staff member should be in charge of supporting people and their families. They could be from the community learning disability team or a nurse with experience in learning disabilities. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.7 and 1.5.18.

22. Support from health services Health staff should always know that someone has a learning disability. It should be written in their medical record. The record should also show the person’s communication needs and other needs. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.10

23. Support from health services Every healthcare team should have a staff member who knows how to work with people with learning disabilities. They should talk to people with learning disabilities to find out their needs. Share this information with other staff to help them support people. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.9

24. Support from health services Offer people the same health checks and screening tests as other older people. (Screening tests check for health problems even in people who feel well.) Ask people if they see a dentist. Ask if they know how to look after their teeth. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.11, 1.5.15, 1.5.16

25. Support from health services Give people advice about keeping well as they get older. Tell people what changes to look out for in their health. Teach people and their families and carers how to spot problems that might need treatment. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.6, 1.5.13, 1.5.16

26. Support from health services Dementia can happen earlier in people with learning disabilities. (Dementia is an illness that affects memory and how you think and feel.) Give families information and support about signs of dementia. Make sure support staff know how to spot dementia. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.36, 1.5.37

27. Care for health problems If someone has a health problem all staff who support them should keep in touch about the person’s care. Involve the person and their family too. Help the person keep active and well by doing things they enjoy, like sports and hobbies. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.8, 1.5.21

28. Care for health problems Give the person and their family information about their health problem. Make sure they understand it. Talk to them about treatments and medicines. Teach them how to take and look after their medicines. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.20

29. Care for health problems If someone needs to go to hospital staff should help them and their family plan this. Find out what support they will need. Help them visit the hospital first and meet staff who will be looking after them. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.25, 1.5.26

30. Care for health problems A family member or carer should be able to stay with the person in hospital. They should be able to sleep there too. Staff should give the person the same care even if they have a family member or carer with them. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.28, 1.5.29

31. Care for health problems Involve people and their families in planning when to leave hospital. Hospital staff should talk to the person’s local care team. Everyone should work together to care for the person. Think about what support their family needs too. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.5.31, 1.5.32, 1.5.33, 1.5.34

32. Planning end of life care Help people plan early the care they want near the end of their life. Help people decide where to have care. Check regularly who the person wants to involve in planning. Involve everyone who is important to the person. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.6.3, 1.6.4, 1.6.5, 1.6.6

33. Planning end of life care Staff in different services should work together to give people the right care near the end of their life. Staff should get to know people to understand their needs. Listen to family and carers because they know the person best. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: recommendations 1.6.2, 1.6.7, 1.6.8, 1.6.9

34. Staff skills Staff working with older people should know how to support older people with a learning disability. Learning disability staff should know how to support people as they get older. Staff in these services should teach each other. Questions that facilitators could ask What do you think about the recommendations? How could they make a difference in your life? How could we make these recommendations better? Can you tell us if there is anything else you would like these recommendations to say? Guideline reference: section 1.7

Artwork is from the Valuing People Clipart collection and cannot be used anywhere else without written permission from Inspired Services Publishing Ltd. www.inspiredservices.org.uk Recs 1.9.8 to 1.9.10