The health needs of people with learning disabilities: issues and solutions
Many people with learning disabilities are not getting their annual health check, facing increased risk factors to a number of diseases as a result. This article considers what more can be done to help those most at risk.
Jim Blair, Consultant Nurse Learning (Intellectual) Disabilities, Great Ormond Street Hospital, Associate Professor Learning Disabilities Kingston and St. George’s Universities (UK)
Understanding how to access the myriad health services can be confusing, with a maze of structures making it difficult to traverse a clear path through.
The pressures on time often leads to short consultation slots that do not provide the in-depth opportunity to explore what makes a person’s health tick or otherwise. This is true for many individuals in society, but for those with a learning disability it is even more of a sharp reality. Such individuals find it hard to navigate a world that is created for people who do not have a learning disability.
Health professionals can struggle to identify what a learning disability is, increasing the likelihood of poor care outcomes. A learning disability is ‘a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence) with a reduced ability to cope independently (impaired social functioning), which started before adulthood, with a lasting effect on development’.1
There are numerous people who are often considered to have a learning disability but who, in fact, do not have one. This includes those with dyspraxia, dyslexia, attention deficit disorder, Asperger’s syndrome or challenging behaviour. Occasionally, people with a physical or sensory impairment are considered to have a learning disability, which is also incorrect.
Individuals with learning disabilities will experience problems with recalling information, telling the time, conceptualising time, maintaining self-care and accompanying activities needed to maintain daily life skills.2 There are three core criteria which must be met for the term ‘learning disability’ to apply:
- Significant impairment of intellectual function (learning new information, remembering and recalling dates, issues, events that would be expected for their age and culture)
- Significant impairment of adaptive and or social function (ability to cope on a day-to-day basis with the demands of his/her environment and the expectations of age and culture)
- Age of onset before adulthood.3
The Confidential Inquiry into the Premature Deaths of People with a Learning Disability4 (CIPOLD) found that people with a learning disability have far worse health outcomes than those in the general population. These include:
- Reduced access to and less likely to receive interventions for their obesity, including screening for thyroid disease and diabetes
- Greater risk of death from amenable causes (avoidable due to medical intervention)
- Variance (approximately 48%) in amenable death rates in the non-learning disability population
- Low take up for national cancer screening programmes (for example, breast, bowel and cervical)
- Low uptake of immunisations such as ‘flu vaccinations
- Increased risk of death due to respiratory infection – one of the highest causes of amenable death.
CIPOLD (2013) also identified that men with learning disabilities died, on average, 13 years earlier than men in the general population, while women with learning disabilities died 20 years earlier compared to the general population. CIPOLD (2013) found the most frequent reasons for premature deaths were:
- Delays or problems with diagnosis or treatment
- Problems with identifying needs
- Difficulty providing appropriate care in response to changing needs.
Annual health checks
Annual health checks are important, as many people with a learning disability regularly have difficulties recognising illness or communicating their needs in an easily understood manner. Additionally, using health services can be challenging for them and their families. GP practices and other health settings can significantly improve the health outcomes of people with a learning disability by enhancing the uptake of the annual health check. Annual health checks should be undertaken on all individuals with a learning disability from the age of 14 onwards.
They are a core way to combat unmet health needs of people with a learning disability and ensuring effective treatment plans, as well as preventative measures, can help to improve health outcomes.
A robust and in-depth annual health check should then trigger appropriate follow-on referrals and reviews. Yet in 2013-14 only 44.2% of eligible adults with learning disabilities underwent a GP health check. This means more than half of people eligible are missing out.8
The annual health check should do a top-to-toe MOT of a person with a learning disability and to get this right, health professionals must involve and engage the person themselves, their families, carers and supporters, as well as community learning disability nurses. This is the only way to enable a complete picture to emerge of what the person’s health status is and how a plan to address health needs can be formulated.
A comprehensive step-by-step guide for GPs undertaking annual health checks was created by Hoghton (2010)9 in partnership with the Royal College of General Practitioners. An annual health check necessarily should involve exploring the following issues:
- Mental and physical health
- Thoughts, feelings, moods
- Sexual health
- Blood pressure
- Heart health
- Bone strength
- Blood tests
- Age-related issues such as dementia
- Specific syndromal concerns.
Once the annual health check has been completed a plan of action, referrals onto other health practitioners, health education, promotion and surveillance should be developed that is accessible and that can be easily understood (that is, in as few words as possible or utilising pictures, photos, signs and symbols). In this way a person with a learning disability can gain an appreciation and awareness of how they can improve their health.
An annual health check is also a good opportunity to ensure the person with a learning disability has a hospital passport.
This is completed by the person or their family prior to admission or attendance at a clinic and can greatly enhance the outcome and the proposed plan for treatment because of the depth of detail contained within them. However, they do require health professionals to know about them. A great many other individuals with a range of disabilities and health conditions can benefit from them since they enable health professionals to know and understand the person behind the health problem. Passports can come in a variety of formats, including video and photographic, and there is no one model that fits all. They may also be called health passports, my health and a variety of other names, but they are all based on the premise of vital information that will enhance the quality of health interactions, diagnosis and outcomes.
Preparing someone for hospital
Preparing people with learning disabilities to go to hospital is not easy, but there is a useful guide available on NHS Choices (http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Going-into-hospital-with-learning-disability.aspx).10 Additionally, and in the Books Beyond Words publication Going into Hospital11 there are two stories of people with a learning disability going into hospital and their experiences of what happens.
In Books Beyond Words, the stories are told through pictures to enable a person with a learning disability, who may read through pictures rather than words, to go through their understanding of what is likely to happen with a person who knows them well. The book includes tips and guides about how to get care right in hospital that will prove helpful to people with a learning disability, as well as those health professional supporting them.
The website has a wealth of information about a variety of health issues in an accessible format www.booksbeyondwords.co.uk.
Their capacity to consent
It is always good practice to check how much a person has understood about what is happening to them whatever age they are. Capacity to consent must be assumed unless assessed otherwise. It is essential to remember that each decision is time, location and decision specific. A variety of communication tools should be employed to aid a person’s understanding to gain a full picture of their knowledge, such as signs, photos, videos, music and Books Beyond Words materials. These will assist health professionals to get care right alongside following the five main principles of the Mental Capacity Act.
Mental Capacity Act 2005 – 5 main principles
1. A presumption of capacity – every adult has the right to be supported to make decisions – use photos, pictures, props, signs, symbols etc
2. The right of individuals – to be supported to make their own decisions
3. Individuals must maintain that right – even if the decisions might be seen as unwise or eccentric – for example, can the person weigh up the risks and benefits of having or refusing treatment?
4. Best interests – always act in the client’s best interests
5. Least restrictive intervention.
Factors to take into account when:
- Do not make assumptions based on the person’s age, appearance, condition, disability or behaviour
- Find out the person’s past and present wishes, beliefs, values and feelings and any other factors they would be likely to consider if they had capacity, including any advanced statements
Take note of the views of other people who know the person best.
If the capacity of an individual over the age of 18 is in question, health professionals need to carry out a four point capacity test, in accordance with the Mental Capacity Act (2005).
It should be established if the person is able to:
- Understand the information relevant to the decision
- Retain the information long enough to make the decision
- Use or weigh up the information
- Communicate their decision.
If the person lacks capacity:
- Can the decision be delayed if the person may regain capacity?
- Act in the best interests of the person
- Consider holding a Best Interest meeting under the Mental Capacity Act (2005)
- Always use the less restrictive option
- Encourage participation in the decision
- Consult all relevant people
- If the person has no relatives consider a referral to the Independent Mental Capacity Advocate Service (IMCA).
A helpful way to assist in capacity assessments is to employ the CURB BADLIP approach. CURB is used to assess and document capacity:
- C Communicate – can the person communicate his/her decision?
- U Understand – can he or she understand the information you are giving?
- R Retain – can he or she retain the information given?
- B Balance – can he or she balance or use the information?
If an individual does not have capacity move onto BADLIP to consider if a decision can be made following a review of best interests:
- B Best interest – if the person lacks capacity can you make a best interest decision
- AD Advanced Decision
- L Lasting Power of Attorney – has Lasting Power of Attorney been appointed?
- I Independent Mental Capacity Act Advocate – is the person without anyone to be consulted about his or her best interest? In an emergency involve an IMPCA
- P Proxy – if unresolved conflicts exist, consider local ethics committee of the Court of Protection appointed deputy.12
Just because a person may lack capacity at one time about one particular decision, it does not mean they lack capacity in other areas or aspects of their life.13
We all need help at different times in our lives and each of us is unique, but to ensure care is adjusted to meet a person with learning disabilities’ specific needs a TEACH approach, first developed in Hertfordshire by the Community Learning Disability Team, is required:
- T Time – take time to work with the person
- E Environment – alter the environment, e.g. quieter areas, reduce lighting and waiting
- A Attitude – have a positive solution orientated focus
- C Communication – find out the best way to communicate with the person, their families, carers, supporters and also communicate this to colleagues
- H Help – what help does the person, family, carers and supporters need and how can you meet these needs?
Following these will greatly enhance every interaction and make sure that each contact counts.
Everybody has a right to expect good healthcare and the best possible opportunities for positive health outcomes. The annual health check, along with the hospital passport, are key ways in which general practitioners, community learning disability nurses and other health professionals can make a tangible and sustainable difference to the lives and life expectancy of people with a learning disability of all ages. Ensuring that in each GP practice health checks are undertaken is a huge step towards achieving this and it is in the gift of every GP to check out what is going on and explore via the annual health checks how a person’s health really is.
1. Department of Health (2001).Valuing people. London: HMSO, 2001
2. Blair J, Emergency Nurse Oct 12 Vol 20 number 6 pp15-19 2012
3. Blair J, http://theqni.tumblr.com/post/129772074291/to-know-or-not-to-know-being-alert-why-it-helps
4. Bohmer C, Niezen-de Boer M, KlinkenbergKnol E et al. American Journal of Gastroenterology. 94, 804810, 1999
5. Galli-Carminati G, Chauvert I, Deriaz N, Journal o intellectual Disability Research. 50, 10, 711-718, 2006
6. Hardy S, Woodward P, Woolard P et al, Meeting the Health Needs of People with Learning Disability: RCN Guidance for Nursing Staff. Royal College of Nursing, London, 2011
7. Heslop P, Blair P, Fleming P, et al.(2013)’ Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD)’. Bristol: Norah Fry Research Centre, 2013
8. NHS Choices ‘Learning disabilities: Annual Health Checks’ http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/AnnualHealthChecks.aspx (Last accessed November 15)
9. Hoghton M, http://www.rcgp.org.uk/learningdisabilities/~/media/Files/CIRC/CIRC-76-80/CIRCA%20
StepbyStepGuideforPracticesOctober%2010.ashx (Last accessed November 15)
10. NHS Choices ‘Going into hospital with a learning disability’ http://www.nhs.uk/Livewell/Childrenwithalearningdisability/ Pages/Going-into-hospital-with-learning-disability.aspx
11. Hollins S, Avis A, Cheverton S, Blair.J, Going into Hospital London: Books Beyond Words 2015
12. Hoghton M & Chadwick S, RCGP Mental Capacity Act (MCA) Toolkit for in England and Wales 2011’ www.rcgp/~/media/Files/CIRC/CIRC-76-80/CIRC-Mental-Capacity-Act-Toolkit-2011.ashx (Last accessed November 2015)
13. Blair J, Clinical Risk 19: 58–63 2013
This article was originally published in the British Journal of Family Medicine, March/April 2016. It is reproduced here by kind permission of the BJFM.