The story of learning disability nursing is one of survival against the odds. The profession, which celebrates its 100th anniversary this year, has continued despite attempts to do away with the role altogether and a debate that has rumbled on over the decades as to whether or not it is “proper” nursing.
The centenary harks back to the first national certificate for what was then known as “mental deficiency nursing” awarded in 1919 by the Medico Psychological Association (MPA) – the national body for psychiatrists – and seen as official recognition of the role as a distinct branch of nursing.
“They were strong and hardy enough to deal with children who perhaps had behavioural disorders or were aggressive”
But nursing care for children and adults with learning disabilities existed long before that, taking place in private homes – for families who could afford it – or in large institutions that began to be established in the mid-19th century, including four voluntary regional asylums in England.
Institutions tended to be split into a girls side and a boys side and this was reflected in the staffing with female “attendants” working with the girls and male attendants with boys and young men, explains historian Professor David Wright, an expert in 19th century provision for people with mental health problems and disabilities and co-editor of From Idiocy to Mental Deficiency: Historical Perspectives on People with Learning Disabilities.
“The women were often former domestic servants while the men were often former members of the armed services,” he said. “They were strong and hardy enough to deal with children who perhaps had behavioural disorders or were aggressive.”
The workforce was largely made up of working class people who lived locally and were attracted to the role because it was a job. Often several members of the same family would work in the institution up the road.
“They were very suspicious and said many of these nurses weren’t real nurses”
The work was physically and emotionally demanding and “burnout” was an issue with some people entering the profession and then leaving after a short time, said Professor Wright.
“But there were also people who felt quite passionate about it, worked for years and years and were very devoted to their client population,” he said.
He believes the community and camaraderie of institutional work appealed to some who saw it as a step up from domestic servitude. “They saw it as having more status – they were a nurse, they might get extra training and were in an environment that was ‘doing good’ and I think that felt meaningful to young women and men in the sector,” he said.
However, there were huge variations in the standards of care, explains learning disability nurse turned academic and historian Professor Duncan Mitchell, from Manchester Metropolitan University.
“We often have a notion of institutions and asylums providing really poor care and in some cases they were bloody awful places,” he said. “But there was also some very kind care and these often existed side by side so in one ward there might have been a very kind regime while in another there was a really horrible regime.”
Institutions for people with learning disabilities were overseen by psychiatrists. Initially those with nursing qualifications would have been registered as mental health nurses.
“This has resulted in a lack of focus and direction for learning disabilities nursing”
When it comes to the less well-documented nursing workforce caring for people with learning disabilities at home, some may have trained at hospital-based “Nightingale” nursing schools, according to Professor Wright.
The first national certificate for mental deficiency nursing came out of a desire to improve standards but also to exert control over the growing number of institutions spawned by the Mental Deficiency Act of 1913, which recommended segregation and institutionalisation.
The fact early institutions were built around concepts of education and training meant learning disability nurses had a multi-faceted role. Some would have had some basic training in bedside nursing but others would have learned teaching skills or how to pass on a trade.
“So a group of people with learning disabilities might work on a farm and the nurse would be in charge of managing them,” noted Professor Mitchell.
“That would have been considered part of nurse training then,” he said. ”Others would have been trained to look after the children and do some rudimentary teaching – possibly some quite advanced teaching – we don’t know really know.”
Nursing adverts circa 1960
So what did early training and education for learning disability nurses involve?
“As far as we know, there was either little or no classroom training but now and again there would have been a lecture by a psychiatrist and sometimes that involved bringing some poor character who lived in the institution who had a particular syndrome like Down’s Syndrome an exhibiting them in front of the class,” said Professor Mitchell.
In 1931 the MPA published the first textbook for learning disability nurses – the Manual for Mental Deficiency Nurses – commonly known as the “green book” and based on a similar textbook for “mental nurses”.
“Most of that is really about how to manage an institution, how you need a really firm routine to keep control of things because in many of these institutions you would have a nurse working with about 60 people on a ward,” said Professor Mitchell.
Institutions lost lots staff in the First World War with quite a few residents also joining up.
“I think they couldn’t be bothered with the implementation, so they continued with learning disability nursing”
The same happened in the Second World War when nurse, “mental nurse” and “mental hospital attendant” were listed as reserved occupations to try and prevent another mass exodus.
However, some institutions were forced to close many of their wards when once again nurses and the more able residents went off to fight.
All institutions, which had previously been private or run by local authorities, were taken over the by the NHS in 1948 and in the early 1950s all nurse training was taken over by the General Nursing Council (GNC).
There had been a parallel scheme up to that point with the GNC providing some training for learning disability nurses – launching its first exams for mental deficiency nursing in 1926 – but most still came under the umbrella of the psychiatrists.
“The GNC were very reluctant to take it on and I suspect they were forced to do it,” said Professor Mitchell. “They were very suspicious and said many of these nurses weren’t real nurses – they worked in workshops, schools and farms and didn’t do what the GNC considered to be nursing.”
Training for learning disability nurses was subsequently brought in line with training for other branches with much more emphasis on bedside nursing.
“When I interviewed some nurses who trained in the 1960s they said most of their formal training was around illnesses, putting bandages on and treating people who were ill in bed,” says Professor Mitchell. “Most of them quite liked that but said it was nothing to do with the job once they qualified.”
The role continued to lack status and was not seen as a vocation or particularly desirable career.
Professor Duncan Mitchell
“The vast majority of people who went into learning disability nursing either had a relative who worked in the institution or couldn’t get into general nursing,” said Professor Mitchell. “Some just fell into it accidentally and there is some evidence to suggest some didn’t really realise what they were coming into.”
He recalls interviewing a German nurse who arrived Britain in the late 1940s thinking she was about to embark on general nurse training.
“A whole group of them came on a boat and were taken on a bus to somewhere in Liverpool where they were allocated to these hospitals. Soon after she arrived she found out she had been sent to a learning disability institution,” he said.
“She had no idea this was what she would be doing and nor did anyone else. She thought she was going to get the SRN [State Registered Nurse]. As it happens she really enjoyed it and made a successful career out of it but she said some others didn’t and were appalled at what they had to do.”
He believes attitudes began to shift in the 1970s and 80s with many more people – but not everyone – making a positive choice to work in the field.
Key developments that had a big impact on the profession in the meantime included the 1959 Mental Health Act, which meant people could only be admitted to institutions on a voluntary basis unless they were a danger to themselves or others.
A series of care scandals also shone a spotlight on the sector. In particular the abuse and mistreatment of patients at Ely Hospital in Cardiff, exposed by the News of the World in 1969, led to a hard-hitting inquiry and a government push to improve services.
“After many years of neglect a lot of investment went into these institutions. Typically big wards of 60 beds were split into around 15-bedded units and there were all these bizarre barriers put in place to try and separate up the buildings,” said Professor Mitchell.
Ely Hospital Cardiff
Source: Cardiff People First
Then began a slow and gradual period of closure. Some nurses were resistant to change but others championed new models of care and actively helped close institutions. When these started to be disbanded many thought learning disability nursing might also cease to exist.
The 1972 Briggs report on the role of nurses and midwives in hospitals suggested nursing was not the right place for work with the “mentally handicapped” and that a new professional group was needed.
This led to the Committee of Enquiry into Mental Handicap Nursing and Care, chaired by Peggy Jay and the 1979 “Jay report”, which recommended learning disability nursing be replaced by a role based in social care.
But these recommendations were not adopted for a number of reasons including a change of government.
“It was in the early 1980s when the Tories got in and, frankly, I think they couldn’t be bothered with the implementation, so they continued with learning disability nursing,” said Professor Mitchell.
Another reason the profession continued was the fact a growing number of people were getting jobs in community nursing and “doing really useful learning disability work when there was nobody else to do it”, said Professor Mitchell, who worked in resettlement before becoming a community nurse himself.
NHS-employed community “mental handicap” nurses were gradually introduced from the mid 1970s onwards, forming part community learning disability teams consisting of a nurse, social worker and often a psychologist.
Other community nurses worked in residential settings and their employment status varied. Some were still employed by hospitals, others by community NHS employers, and others by local authorities or the independent sector, according to Professor Mitchell.
“The institutions for all their many faults provided a focus and a voice for learning disability nursing”
Those employed by the NHS retained their status and employment rights as nurses but some left their nursing status behind to establish new roles in social care.
The start of a steady decline in nurse numbers and training places can be linked to the closure of institutions. The majority had their own nurse education centres, which were merged into the larger nursing schools and later into universities, said Professor Mitchell.
“During the various mergers numbers were gradually cut and in many cases courses were dropped altogether as they became unviable,” he said.
“The institutions for all their many faults provided a focus and a voice for learning disability nursing, the more diverse group of employers, especially those outside the NHS had no such voice and without the demand for nurses from employers the numbers in training reduced,” he added.
One thing that quickly became apparent was that the shift to community care did not mean people with learning disabilities being absorbed by mainstream health and other services – far from it.
As a result learning disability nurses became advocates “crucial to helping people with learning disabilities live their lives and do that in a healthy way”, said Professor Mitchell.
However, in 2011, a Panorama investigation exposed abuse of people with learning disabilities at Winterbourne View in South Gloucestershire.
Around the same time a UK-wide review of learning disability nursing led to the publication of the Strengthening the Commitment report in April 2012, which highlighted the need to boost capacity and ensure all people with learning disabilities could access the nursing expertise they needed.
This flagged up the fact the learning disabilities nursing workforce was “smaller and more widely distributed across the health and social care sector than ever before” with some in specialist roles but many others in generic care or managerial posts.
“This has resulted in a lack of focus and direction for learning disabilities nursing, fragmentation of the learning disabilities nursing community and, potentially, a loss of core nursing and specialist learning disabilities nursing skills to the system at a time when demand is likely to increase,” said the report.
The profession has continued to be shaped by a growing understanding of the physical health needs of people with learning disabilities and the shocking health inequalities that persist for this vulnerable group.
“Support workers do a lot of the day to day domestic stuff now”
Joanne Delrée, learning disability nurse and interim external engagement lead at London Southbank University, has seen curriculums evolve to include “much more” clinical content.
Roles have also changed with learning disability nurses doing more signposting and training and education of other professionals. Some jobs are less hands-on. “Support workers do a lot of the day to day domestic stuff now. If there is a learning disability nurse there, then they will be the manager,” said Ms Delrée.
A constant theme throughout the profession’s history has been whether or not learning disability nursing counts as nursing and Ms Delrée’s students continue to face the same kind of negative comments she experienced when she was in training.
Earlier in her career, Ms Delrée admits she was not that bothered about whether she was a “nurse” or not but she is now fiercely proud of that title.
“I am very much a nurse – particularly with more modern definitions of nursing, which is about person-centredness, individualised care and holism,” she said. “Now that we know so much more about the health inequalities of people with learning disabilities we have never been more needed.”
One theory as to why learning disability nursing has “always been the poor relation” among the four main fields of nursing is there is an element of transference, explained Ms Delrée – the idea that those working with an oppressed and discriminated against group are in turn undervalued.
However, she believes the tide is turning. Alongside work to raise the profile of people with learning disabilities and ensure their voices are heard and contribution valued, there is increasing recognition of the broad skillset and unique combination of specialist and general skills required to be a learning disability nurse.
Lead nurses and directors of nursing in particular are recognising the skills and qualities of learning disability nurses, said Ms Delrée, evidenced by the fact her students are now finding jobs in a much wider range of places with big trusts and employers “clamouring” to get hold of them.
“When our learning disability nursing courses were under threat because of the bursary cuts and reduction in applications the response from our trust partners was huge,” she said. “There really is a shift – people are finally starting to understand the skillset. We don’t just glue pasta onto pieces of paper.”
“There really is a shift – people are finally starting to understand the skillset”
Despite ongoing concerns about nurse numbers, the profession again appears to be weathering the storm. Ms Delrée believes it has survived in part due to the type of people now attracted to the role.
“Learning disability students tend to be older, have a bit more life under their belts and stuff has happened to them that has knocked their edges off,” she said. “They are kind and compassionate people from the outset but if you’re going to work in learning disabilities you also need to be tenacious by nature or you won’t stick it out.
“Once you have qualified and know you are the only registered professional with any knowledge of this whole population of really vulnerable people – you are not going to let that go,” she said.
Most also have personal experience of learning disability whether that’s a family member or friend with a learning disability, work experience, volunteer work, or “just some little moment in their life”.
For her it was a friend at primary school. “Everyone has their story and I wonder if that is why we are such a tenacious bunch because there is that element of it’s not work, it’s kind of personal,” she noted.
- Focus: Learning disability nursing – how to halt the decline
- Focus: Meet two learning disability nurses – our case studies
Timeline of key dates affecting learning disability nursing
Throughout the decades learning disability nursing has been shaped by prevailing attitudes and theories about treatment and care – many that would be unacceptable today. Here are some of the key events and developments in policy and legislation:
- 1842 – Lunacy Act recommends the building of asylums for “pauper” lunatics with no clear distinction between people with mental health problems and learning disabilities
- 1850s and 60s – Establishment of large asylums for “idiots” including four regional settings in England
- 1886 – Idiots Act relating to care, education and training distinguishes between mental health and learning disabilities for the first time
- 1908 – Report of the Royal Commission on Care and Control of the Feeble-minded set up by Winston Churchill recommends compulsory institutionalisation for the “feeble-minded” and sterilisation of the “unfit”
- 1913 – Mental Deficiency Act identifies four grades of mental deficiency – idiots, imbeciles, feeble-minded and moral defectives. Recommends segregation and encourages the building of more institutions
- 1914-1918 – Many attendants and residents of institutions leave to fight in the Great War
- 1919 – First certificate in “mental deficiency nursing” awarded by the Medico Psychological Association (MPA)
- 1920 – General Nursing Council is established by the Nurses Registration Act of 1919. It goes on to launch its own exams for mental deficiency nursing in 1926
- 1931 – Publication of the Handbook for Mental Deficiency Nurses by the MPA – mainly focused on managing large institutions
- 1939-1945 – Staff join up in World War II despite the fact nurse, “mental nurse” and attendant roles are listed as reserved occupations
- 1946 – National Association of Parents of Backward Children founded – later to become Mencap
- 1948 – Institutions and “colonies” for people with learning disabilities subsumed into the newly-created NHS becoming “hospitals” overnight
- 1950s – GNC takes over responsibility for all nurse training including for learning disability nurses leading to more of an emphasis on learning bedside nursing skills
- 1953 – Nearly half the NHS’s hospital beds are for “mental illness or mental defect” with concern about spending a likely factor in shifting government thinking towards community care
- 1959 – Mental Health Act says patients should only be admitted to a hospital on a voluntary basis unless they were a danger to themselves or others
- 1961 – Minister of health Enoch Powell says mental hospitals will close within 15 years
- 1971 – Better Services for the Mentally Handicapped white paper advocates a reduction in hospital beds for adults from 90% to 40%
- 1972 – Briggs report suggests support for people with learning disabilities should take place outside the nursing profession
- Mid-1970s – Community “mental handicap nurses” start to be introduced in some areas – eventually spreading to most parts of the country
- 1979 – Ely Hospital scandal exposed by the News of the World leading to an inquiry chaired by Geoffrey Howe and a drive to improve and invest in services championed by secretary of state for social services Richard Crossman. That year also saw the publication of the Jay report recommending learning disability nursing be replaced by a role in social care
- 1986 – Closure of Starcross in Exeter – the first large long-stay institutions for people with learning disabilities to close its doors
- 1990 – NHS and Community Care Act enshrines the right to full needs assessments and the expectation that services should be tailored to those needs where reasonably practicable
- 2001 – Valuing People white paper emphasises the rights of people with learning disabilities to “lead their lives like any others” and highlights the key role of nurses in providing support
- 2007 – Mencap publishes the Death by Indifference report exposing serious failings in NHS care for people with learning disabilities
- 2008 – Healthcare for All – the report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities supports the introduction of acute liaison nurses in hospitals
- 2009 – Valuing People Now sets out a new three-year strategy for people with learning disabilities with a focus on employment, health and housing
- 2011 – Winterbourne View care scandal is exposed by BBC Panorama programme
- 2012 – Strengthening the Commitment – the report of the UK modernising learning disabilities nursing review sets out its vision to strengthen the capacity, capability, quality, leadership and visibility of LD nursing
- December 2012 sees the publication of Transforming Care – the response to Winterbourne View – emphasising the need for a well-trained workforce with good clinical and managerial leadership and asking for a progress report on Strengthening the Commitment
- 2013 – Strengthening the Commitment: One Year On says the profile of LD nursing has increased and the role in gaining more recognition but more work is needed
- 2016 – Learning Disabilities Mortality Review (LeDer) gets under way highlighting the scale of premature deaths
- 2018 – Number of learning disability nurses in the NHS hits a record low. Learning disability standards for NHS trusts launched by NHS Improvement, highlighting the important of the right workforce and specialist skills
- 2019 – 100th anniversary of learning disability nursing. Published in January, the NHS long-term plan for England places a new emphasis on tackling health inequalities with learning disabilities and autism one of four clinical priorities
Learning disability timeline
Source: Jennifer Van Schoor