A sombre anniversary and a call for the RCGP to lead on better healthcare for people with learning disability

Peter Lindsay has enjoyed and survived 44 years as a General Practitioner, finding all of it interesting and fascinating.

2025 marks the 80th anniversary of Victory in Europe (VE) day. Less known but of equal importance, it marks the 85th anniversary of the initiation by the ‘T4’ Nazi troops of the murder of roughly 250,000 people with learning disability, practising the same techniques that would be used in the concentration camps of Auschwitz, Dachau and other dark places in which more people with learning disability were killed.^1,2 Well-intentioned visitors to Germany at the time were were not allowed to know these evils were happening, hidden behind prestigious buildings and propaganda.³ in 2025, Laurence Rees warns us in “The Nazi Mind: Twelve Warnings from History”, just how easy it is to dehumanise the disabled.⁴ “Unfortunately, society has long segregated and marginalised people with disabilities, defining them as inherently non-productive. The labelling of people with disabilities as burdensome, non-contributing members of society then often becomes a self-fulfilling prophecy as it occurs in many forms of discrimination [and prejudice]”².

Whilst we can abhor these acts of inhumanity, it is worth remembering that 85 years ago the majority of people with learning disability in our own country were detained in specially built “colonies” or other secure units under the regulations set by the Mental Deficiency Act of 1912 (revised to broaden its definition of “deficiency” in 1917 and finally repealed by the Mental Health act of 1959). From 1913 the Act created the ‘lost generation’ of learning disabled adults and children.⁵ It may well be argued that such detention protected those with learning disability: “…one is left to consider why such crimes were confined to the Nazi state alone … given the enthusiasm for eugenics of the ‘genetically inferior’ and the alienation of people living with …disabilities in the United States and numerous countries across Europe and the Anglosphere.”¹ In 2025 posts on the social media “X” and Elon Musk’s speeches advocate the same eugenics using foul words to describe people with disability⁶ – a clear loud warning to us all of the need for vigilance.

The RCGP was born in the 1950s as the Mental Deficiency Act was being repealed. Consideration had to be given as to what medical care would be given to people with learning disability once they had been discharged into the community.

By the 1970s the secure units and colonies were in operation. I visited a colony as a medical student. I found people of differing abilities, some decorating buildings, playing in an orchestra and repairing cars. They lived alongside others, more severely disabled with physical disabilities, people being allocated to live in a specific building depending on their abilities. Reading ‘Made Possible’⁷ in 2020 came as no surprise. This described the work done by people with learning disability in the creative arts, sport and local government. Nor was I surprised by the autobiography of David Barron when he compared his life in a colony to living in a flat with support, the descriptions of Christmas, work outside and bed-making crying out with shared humanity.⁸ Colony residents were cared for by one devoted superintendent, a Consultant Psychiatrist, who had sole and total responsibility for all their care with some support from out-of-hours or sessional GPs.

In 1978, Conservative politician Keith Joseph repeated the words used by those pushing for the Mental Infirmity Act in 1912: “The balance of our population, our human stock, is being threatened …by those of low intelligence, most of low educational attainment…”⁹ The newly acquired Princes Gate headquarters of the RCGP had no memorable response as Keith Joseph went on to shape conservative and neoliberal thinking at that time in Margaret Thatcher’s government.

By the 1980s, more people with learning disability were discharged than were detained. Their care fell more to general practice, a task willingly and enthusiastically undertaken by many practices. I entered general practice and again met people I had seen as a student in the confines of a colony. They were now living in supported living circumstances, supported by carers who had also been employed in the colony. Professor Michael Kerr, a psychiatrist who supported the transition of his own patients from colony to community, highlighted the increased premature morbidity and mortality of this group of people and commenced the discussion about the value of Annual Health Checks.¹⁰ Interested GPs, now RCGP Members, further demonstrated the significantly higher morbidity and mortality amongst those with learning disability who were 5-7 times more likely to die prematurely. More recently we have found that at least 40% of that mortality is preventable across all social groups not necessarily related to social deprivation.¹¹ Graham Martin, a GP, and others promoted the simple initiative of arranging for each person with learning disability, whether or not they were registered on other chronic disease management registers, to undergo annual health checks and proved the benefits of these. Entering general practice, armed with a tuning fork and otoscope, I was overjoyed to improve cognition in some middle-aged patients by providing them with hearing aids! Older partners, initially sceptical about the checks, came to recognise the decreased numbers of “Friday afternoon crisis calls.” We now know that these checks reduce unplanned admissions¹² and further research is being undertaken on their other benefits. The Equality and Human Rights Commission highlights the benefits of annual health checks.¹³ Graham Martin led vigorous campaigning so that by the turn of the century annual health checks became item of service additions to general practitioners so that now 75% of people known with Learning Disability receive benefit from the checks.

In 2001 the UK Department Of Health publication “Valuing People” described the need for health and social provisions to be adapted to the needs of people with Learning Disability.¹⁴ In 2010 the RCGP was instrumental in the publication of “A Step by Step Guide to Annual Health Checks”¹⁵ and put a toolkit of further advice on their website. Others, including NHS England, linked their own advice to this toolkit and our annual meeting featured it in 2012. Inexplicably the toolkit, visited by many, subsequently disappeared. Those such as NHSE who produced guidance linked to the toolkit stopped referring to the RCGP and nowadays The  British Institute for Learning Disabilities no longer lists the RCGP amongst its supporters though it has GPs as members. The RCGP continues to put other toolkits on the website acknowledging their benefit: “Toolkits like these are effective because they provide structured, actionable steps, enable us to measure progress, foster motivation, and can include elements of incentivisation. They can also help us share learning and processes across practices and regions, as we will all be following the same, or similar steps.”

I can find little further mention of learning disability at our annual meetings since 2012 when the College moved to the new headquarters in Euston Square. Meanwhile the Royal College of Physicians (RCP) and the Royal College of Paediatrics and Child Health have included the care of people with learning disability in their postgraduate education and advocated for annual health checks to start at age 14 years. The RCP has linked with a university to create a modular course on the care of adults with learning disability, open to all doctors. The course stresses the dangers of diagnostic overshadowing, atypical presentations, and premature ageing and educates on the need for consulting arrangements and styles to be altered to patients’ needs.¹⁶ However The RCGP does maintain a special interest group for learning disability which is large, thriving and welcoming and is granted an annual date in the College One Day Essentials calendar.¹⁷

50% of young offenders in prison and 25% of all offenders are considered to have learning disability. The RCGP Secure Environments Group produced “Learning and Intellectual Disabilities in Secure Environments.¹⁸ Anecdotally, I have found a high incidence of people with undiagnosed, but clinically obvious, learning disability amongst those who are homeless. There is much that needs to be done to ensure we recognise all those affected by learning disability as their needs can be overlooked.¹⁹ 75% of people with Learning Disability are not on the GP Learning Disability register.²⁰

The 2019 Covid Pandemic was particularly hazardous to people with learning disability. I was disappointed to see no RCGP guidance guidance on their care or priority to receive Covid vaccine. It was known that the 50% of the increased premature mortality of people with Learning Disability was due to respiratory conditions. More recently the College e-learning program on influenza vaccine has not highlighted the need for people with learning disability to receive influenza vaccine. The recent Darzi Report stressed that the care of adults with learning disability was a priority, “Only 4 in 10 people with Learning Disability will live to see their 65th birthday. People with Learning Disability are twice as likely to die from preventable causes and four times as likely to die from treatable causes—with areas such as respiratory care and cancer care of particular concern.” I was unaware of a meaningful response by the RCGP to this challenge. Instead the RCGP headquarters housed a ‘Health Equalities’ exhibition which did not highlight disability. The Equality and Human Rights Commission state: “There is increased recognition of disadvantages that people with Learning Disability face.The result is that many learning disabled people are still excluded and continue to face inequality in every aspect of their lives…”¹³

Since I was a student I, like many others, have learnt so much from people with learning disability and still do. I have had the privilege of teaching students and GP trainees about people with learning disability. The skills they learn as they work with this population can affect the whole of their learning about the clinical care they give to all patients. There are now multidisciplinary learning disability teams who have created their own “easy read” or other accessible information about healthcare for people with learning disability. Commonly that literature has been found to be very useful for people without the label of learning disability because the excellence, empathy and thoughtfulness within the literature and its means of presentation make it easier for us all to read at times of ill health. Teaching our trainees and students these attitudes and skills can only benefit us all. To enter into the world of those with learning disability and to remove the fear and dread which lies in loneliness, uncertainty and the unknown we must all be the best doctors, the best people, we are capable of being … and think of the effect that could have on our NHS. Those who cannot write or speak can still express and explain, in their responses to basic kindnesses, the meaning of our humanity.

General Practice has a role in the care of people with Learning Disability. This role must be supported by the RCGP. This year’s sombre 85th anniversary marks a suitable rallying point. The College must reclaim its role in advocating for the health of those with learning disability. A suitable toolkit should be put back on the RCGP website. E-learning on influenza vaccine this autumn needs to include the need of people with learning disability. These must be publicised regularly and widely to all practices, supporting the NHS 10 year plan – “both learning disability and autism and respiratory disease, and more specifically pneumonia, have been recognised as a priority for the NHS”.²¹ “The most common of all contributing factors in death were diseases of the respiratory system.”¹¹ This would also highlight to those caring for the 25% who have not had annual health checks that people with learning disability are a significant minority within their practices who are subject to health inequalities leading to higher premature morbidity and mortality. The care of people with Learning Disability can easily be addressed by a keynote lecture or plenary session being organised for the 2026 Annual Meeting.

The care of adults with learning disability is our duty even though they constitute a minority. That minority cannot always speak for themselves without our support. It is up to us to speak up so that learning disability is recognised and acted on as a priority in the College.

References

1. Michael Robertson, Astrid Ley and Edwina Light The First into the Dark: The Nazi Persecution of the Disabled. UTS ePRESS. (2019) https://www.jstor.org/stable/j.ctv1w36p9p.8 [accessed 2/5/25]
2. Evans S, 2007, Hitler’s forgotten victims, Tempus
3. Waddell D, 2014, Field of Shadows, Bantam Press
4. Rees L 2025 The Nazi Mind: Twelve Warnings from History, 448pp. Viking. £25.
5. Sarah Wise, The Undesirables: the Law that Locked Away a Generation, OneWorld Publications, 2024, PB, 352pp, £13.26, 978-0861544554
6. Kirkland J Guardian. 3/3/25 ‘The basis of eugenics’: Elon Musk and the menacing return of the R-word https://www.theguardian.com/world/2025/mar/03/r-word-right-wing-rise [accessed 2/5/25]
7. Salman S 2020 Made Possible Unbound Publishers, ISBN 978-1783528264
8. Barron D A (1996) Price to be Born: My Childhood and Life in a Mental Institution, MENCAP Northern
9. Keith Joseph “Speech at Edgbaston” Online 1974. Margaret Thatcher Foundation Website, https://www.margaretthatcher.org/document/101830 [accessed 2/5/25]
10. Kennedy N, Kennedy J,Kerr M, et al.2022 Health checks for adults with intellectual disability
    and association with survival rates: a linked electronic records matched cohort study in Wales, UK. BMJ Open 2022;12:e049441.doi:10.1136/ bmjopen-2021-049441
11. Rydzewska E, Nijhof D, Hughes L, et al. Rates, causes and predictors of all-cause and avoidable mortality in 514 878 adults with and without intellectual disabilities in Scotland: a record linkage national cohort study. BMJ Open 2025;15:e089962. doi:10.1136/ bmjopen-2024-089962
12. Iain M Carey, Fay J Hosking, Tess Harris, Stephen DeWilde, Carole Beighton, and Derek G Cook. ( 2017) “An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database Health Services and Delivery Research, No. 5.25
13. Equality and Human Rights Commission 2016 England’s most disadvantaged groups: People with learning disabilities. An Is England Fairer? https://www.equalityhumanrights.com/sites/default/files/2021/is-england-fairer-2016-most-disadvantaged-groups-learning-disabilities_0.pdf [accessed 2/5/25]
14. DOH HMSO 2001 Valuing People. A new strategy for Learning Disability for the 21st Century. London
15. Hoghton M and RCGP 2010 Learning Disabilities Group A step by step guide for GP Practices RCGP
16. https://www.rcp.ac.uk/events-and-education/education-and-learning/clinicians-as-clinicians/training-programme-to-meet-the-medical-needs-of-adults-with-a-learning-disability/ [accessed 2/5/25]
17. RCGP Special Interest Group https://www.rcgp.org.uk/about/communities-groups/learning-disabilities [accessed 2/5/25]
18. https://elearning.rcgp.org.uk/mod/book/view.php?id=13151&chapterid=625 [accessed 2/5/25]
19. Lunsky Y 2008 Frequent use of the emergency department by a man with learning disability: an analysis of clinical and systemic contributors Advances in Mental Health and Learning Disabilities Volume 2 Issue 4
20.  The Rt Hon. Professor the Lord Darzi of Denham 2024 Independent Investigation of the National Health Service in England. Chapter 4 Sections 25-27
21. https://www.longtermplan.nhs.uk/online-version/overview-and-summary/ [accessed 2/5/25]

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