This is a joint statement by RCPsych President Dr Adrian James and the chair of RCPsych Faculty of Psychiatry of Intellectual Disability, Dr Ken Courtney, in advance of Learning Disability Awareness Week 2021.
Intellectual disabilities is everyone’s business
People with intellectual disabilities present as patients in all mental health services.
As psychiatrists we may not always enquire about a person’s learning and cognitive abilities and they may wish to mask their difficulties to avoid the stigma of appearing different from others. The descriptive term ‘challenging behaviour’1 may obscure a treatable underlying mental disorder.
As a result, people may not receive appropriate care in a way that they understand. The ‘challenge’ to us as clinicians is to understand the experience of a person with intellectual disabilities and how they communicate their difficulties.
People with intellectual disabilities have higher rates of mental disorders than the general population2.
We know from the inquiry in to Winterbourne View Hospital in 2012 that people with intellectual disabilities are prescribed more psychotropic medication than others3.
Medication is not always prescribed to treat a defined mental illness but rather to manage ‘behaviour’4.
Furthermore, in inpatient services, people with intellectual disabilities are more likely than those without intellectual disabilities to be subject to restrictive practices5.
Cases such as Oliver McGowan6 and Connor Sparrowhawk7 highlight how we need to make clinical care safer for people with intellectual disabilities. In England, Building the Right Support8 advocates providing support in the community rather than admitting people to hospital care that is often at great distances from their families.
There is also focus in the NHS Long Term Plan on reducing the number of people with an intellectual disability and/or autism cared for in inpatient facilities.
The physical health indices of people with intellectual disabilities are poorer than the general population. They die at a younger age, with men dying on average 23 years and women dying 27 years younger than the general population9.
They also have more comorbid disorders with a median of eleven compared with five in the general population10. The COVID-19 pandemic has highlighted the vulnerability of people with intellectual disabilities in very stark terms. Death rates have been three times greater11. The Annual Health Check by GPs goes some way to identifying physical disorders but with low uptake, not everyone has a health check and so disorders go unnoticed and untreated12.
What should the psychiatrist do?
All psychiatrists are likely to have contact with people with intellectual disability who may present to us as ‘just getting by’. We need to be aware of the potential for cognitive challenges in patients and explore them further.
The proposal for mandatory training, known as the Oliver McGowan mandatory training, will go some way to enhance awareness among all health and social care staff of intellectual disabilities13.
As psychiatrists we should inform ourselves more on the needs of people with intellectual disabilities using our services.
What supports are available?
Support is available to clinical services and as advocates for patients we should seek out the appropriate resources provided in health services or by dedicated support groups e.g. MENCAP14 or The Challenging Behaviour Foundation15.
If you think a person may have an intellectual disability, formal assessment should help to clarify their strengths and challenges.
Assessment of adaptive functioning is more informative and meaningful than raw IQ scores. We should support them to access appropriate intellectual disability services. Specialist input from mental health services may be needed with joint working between services to meet a person’s needs. Under the Equality Act16, we are obliged to adapt our clinical practice to accommodate and support people with intellectual disabilities.
The care of people with intellectual disabilities is a major objective of the NHS Long-Term Plan in England17 with the purpose of reducing health inequalities among people with intellectual disabilities.
For example, the LTP sets out how, over the next five years, national learning disability improvement standards will be implemented and will apply to all services funded by the NHS. These standards will promote greater consistency, addressing themes such as rights, the workforce, specialist care and working more effectively with people and their families.
As the Digital Transformation of the NHS continues at pace, the College has stressed that people with intellectual disabilities should not be excluded and every effort should be made to design services that can be accessed by all, depending on their needs.
The Care Quality Commission in England is paying greater attention to how all health and social care providers support people with intellectual disabilities. CQC inspectors are likely to ask all clinical services how they support people with intellectual disabilities.
Proposals to changes in mental health legislation in England and Wales and in Scotland would alter how we support people with intellectual disabilities who are detained18; 19. The emphasis is on the human rights of patients that we can focus on in our current practice. Above all, we should seek to support and empower people with intellectual disabilities who use our clinical services.
Finally, as a College we will shortly be publishing our position statement on medication for people with intellectual disabilities to help address the issue of overmedication. Please do keep an eye out for when this is published.
1. Emerson E, Bromley J. The form and function of challenging behaviours. Journal of Intellectual Disability Research. 1995 Oct 1;39(5):388-98.
2. Cooper SA, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British journal of psychiatry. 2007 Jan;190(1):27-35.
3. Flynn M. Winterbourne View Hospital. A Serious Case Review. Gloucestershire, UK: South Gloucestershire Council. 2012.
4. Sheehan R, Hassiotis A, Walters K, Osborn D, Strydom A, Horsfall L. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ 2015 Sep 1;351.
5. O'Shea LE, Picchioni MM, McCarthy J, Mason FL, Dickens GL. Predictive validity of the HCR‐20 for inpatient aggression: the effect of intellectual disability on accuracy. Journal of Intellectual Disability Research. 2015 Nov;59(11):1042-54.
6. Louch G, Albutt A, Harlow-Trigg J, Moore S, Smyth K, Ramsey L, O'Hara JK. Exploring patient safety outcomes for people with learning disabilities in acute hospital settings: a scoping review. BMJ Open. 2021 May 1;11(5): e047102.
7. England NHS, Region S, Board OS. Independent review into issues that may have contributed to the preventable death of Connor Sparrowhawk. https://www.england.nhs.uk/wp-content/uploads/2015/10/indpndnt-rev-connor-sparrowhawk.pdf
8. NHS England. Building the right support: a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition.
9. England NHS, Improvement NHS. Learning disability mortality review (LeDeR) programme: action from learning. https://www.england.nhs.uk/wp-content/uploads/2019/05/action-from-learning.pdf
10. Kinnear D, Morrison J, Allan L, Henderson A, Smiley E, Cooper SA. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ open. 2018 Feb 1;8(2): e018292.
11. Public Health England. COVID-19: deaths of people with learning disabilities. https://www.gov.uk/government/publications/covid-19-deaths-of-people-with-learning-disabilities
12. Hoghton M, Martin G, Chauhan U. Annual health checks for people with intellectual disabilities. BMJ 2012;345: e7589
13. McGowan P. Compulsory learning disabilities training should be my son’s legacy. https://www.proquest.com/openview/98154466fa6404241f039b9399e9fe3d/1?cbl=2042235&pq-origsite=gscholar
16. Office for Disability Issues. Equality Act 2010: Guidance. HM Government, 2011 (http://odi.dwp.gov.uk/docs/law/ea/ea-guide-2.pdf).
17. NHS. The NHS long term plan. 2019. https://www.longtermplan.nhs.uk/
18. Department of Health and Social Care. Reforming the Mental Health Act. 2021. www.gov.uk/government/consultations/reforming-the-mental-health-act/reforming-the-mental-health-act
19. Independent Review MHA Scotland https://webarchive.nrscotland.gov.uk/20200313205853/https://www.irmha.scot/