Learning disability nurse Lynne Westwood shares some top tips on improving the experience of people with learning disabilities in practice
1. Know the statistics for health inequalities
Back in 2001 the Valuing People1 report recognised the poor health of people with learning disabilities. In this report the then government called for a confidential inquiry to provide clear evidential links. The Confidential Inquiry into Premature Deaths of people with Learning Disabilities first published its results in 2013 showing above average deaths of young people plus concerns2 about ill health among the rest of the learning disability population. Subsequent LeDER3 (learning disability mortality) reports continue to show progress towards improving health for people with learning disabilities and therefore narrowing the gap between life expectancy of the general population and those with a learning disability.
People with a learning disability have a lower life expectancy than the general population. Statistics show that, on average, females’ lives are shorter by 27 years and males’ by 23 years.
2. Consider appointment times
Mencap’s campaign Don’t Miss Out4 looks to support people with learning disabilities to get the best healthcare they can, and suggests giving people with learning disability double appointments so that they have time to share any health concerns and you have time to ensure they fully understand what you have discussed. Consider using first or last appointment slots so that people are not rushed.
3. Find out how the person communicates best
People with learning disabilities have different levels of verbal communication, with many using few or no words. Look around your building – are posters easy to understand? Is there a space that could be used as a quiet area for people who are challenged by excess sensory stimulation? Learning a few simple Makaton or British Sign Language signs is a good starting point.
4. Read and use the person’s hospital passport
A hospital passport is a document that provides lots of useful information – make sure it is available for everyone to read. The hospital passport will share health information, medication and uses a traffic light system, with red indicating must-know information. Use the hospital passport to communicate with the person and their carers.
5. Reasonable adjustments make a big difference
The NHS has useful ideas on its website5 for people with learning disabilities. Reasonable adjustments can include using simple words or pictures. It might be better to visit the person in their own home instead of seeing them in a busy clinic. If they are stressed, they may take longer to understand instructions and questions and this may delay recovery from ill-health.
6. Remember to see the person and not just their learning disability
Diagnostic overshadowing is a real problem. Often professionals see the learning disability rather than the physical health issue that brings the person in to your service. Pain can be missed by diagnostic overshadowing, leading professionals to make an incorrect diagnosis. As an example, a person who has no verbal language might hit their face and scream, which may be viewed as a behavioural issue, but they might actually have a headache or toothache.
7. Build a relationship with your local learning disability liaison and community nurses team
It’s good to develop links with the local community learning disability nursing team and the hospital learning disability liaison nurse. Find out who your local teams are and where they can be found. Many people will not have accessed these teams, so having good multiprofessional working relationships will be beneficial for all.
8. Become a learning disability champion for your practice or service
Why not be a champion for people with a learning disability? It is useful to have at least one person who is interested in supporting this part of our population. Perhaps you need to employ a learning disability practitioner who can help you meet the needs of this population in your service.
9. Allow the person to be the expert about how they feel
The Mental Capacity Act (2005) empowers people with learning disability to make their own decisions and they should be supported to do so. Give them time to absorb any information you discuss before you ask for their answer. A delay in cognitive processing can lead to a delay between receiving information and giving a reply.
10. Implement the NHS Improvement Standards
Developed in 2018 the NHS Improvement Standards for Learning Disability6 work around four priorities as listed below:
- Respecting and protecting rights.
- Inclusion and engagement.
- Specialist learning disability services.
Lynne Westwood is a learning disability nurse and course leader for disability nursing at the University of Wolverhampton
- Department of Health (2001) A New Strategy for Learning Disability for the 21st Century: A White Paper. London (Cm 5086).
- Heslop P, Blair PS, Fleming P et. al. Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD). Lancet. 2014 Mar 8:889-95. doi: 10.1016/S0140-6736(13)62026-7
- University of Bristol. The Learning Disabilities Mortality Review (LeDeR) Annual Report 2018. 2018.
- Mencap. Don’t Miss Out. https://www.mencap.org.uk/advice-and-support/health/dont-miss-out
- NHS England. Learning Disabilities. https://www.england.nhs.uk/learning-disabilities/
- NHS Improvement. The learning disability improvement standards for NHS trusts. https://improvement.nhs.uk/resources/learning-disability-improvement-standards-nhs-trusts/