As learning disability nursing celebrates its 100th anniversary this year the profession faces two key challenges, according to leading figures in the sector.
“The biggest concern is the steady decline in the number of learning disability nurses actually in practice plus – in recent years – a considerable drop off in the number going into training,” said Simon Jones, chair of the Royal College of Nursing’s Learning Disability Nursing Forum.
“The reduction in learning disability nurse numbers has restricted access to mainstream services”
Linked to this is the second big issue – ongoing lack of awareness of what learning disability nurses do and the difference they make. “If you don’t know what somebody does, then it’s very easy to say ‘we don’t need them’,” said Mr Jones.
Health Education England is warning of a 30-35% shortfall in learning disability nurses by 2020 and there is evidence shortages are affecting the quality of services.
“The reduction has restricted people’s access to mainstream services and waiting lists for specialist care are growing, while people’s health conditions deteriorate,” warned Mr Jones.
Research such as the Learning Disabilities Mortality Review (LeDer) programme continues to highlight the huge inequalities in health outcomes for people with learning disabilities.
“We’re invisible and the client group is invisible”
The number of learning disability nurses on the UK-wide Nursing and Midwifery Council register has fallen steadily from nearly 19,000 in 2013 to 17,142 in September last year.
In June last year the number of learning disability nurses employed in the NHS in England hit a record low of 3,192 – representing a more than 40% drop in less than a decade.
In England, the removal of the nursing bursary is thought to have hit learning disability nursing courses particularly hard, because they tend to attract more mature students less keen to get into debt.
A knock-on effect of diminishing numbers has been the closure of courses with some parts of the country left with little or no training options.
However, Mr Jones noted “some glimmers of hope” with some courses re-starting and several new pre-registration masters and undergraduate courses launching.
These include an honours degree at the University of Winchester, which gets under way this autumn, and a distance learning degree from the Open University from 2020.
Meanwhile, many experienced nurses in practice are nearing retirement age. In particular, a large number with “mental health officer” status – and therefore eligible to take early retirement – are now at or very near that point.
“What we’re actually seeing now is that when people qualify there are more jobs than students”
It is not as if no one saw this coming, noted Bob Gates, professor of learning disabilities at the University of West London, who pointed out the sector had been warning of problems for many years.
“It has gone from a chronic problem to an acute episode and unless someone really takes it seriously and has a mind to resolve some of these issues I fear it will just get worse,” he said.
Wales, Scotland and Northern Ireland, where the nursing bursary is still available, have seen an increase in commissioned places, according to Ruth Northway, professor of learning disability nursing at the University of South Wales.
“I think we’re now getting people into the workforce in far larger numbers than we maybe did five, 10 years ago,” she said. But whether that will balance out the numbers due to retire was hard to say, she admitted.
All agree a range of action is needed. New routes into nursing – including nursing associates and apprenticeships – are seen as one way to bring in more people. However, some suggest the sector has been slow to capitalise on these.
Apprenticeships in learning disability nursing have yet to really take off, although the Open University will be offering a registered nurse degree apprenticeship from next year.
“Until we have clear, strong leadership with authority at very senior level then I suspect we’re just going to have this muddle”
HEE told Nursing Times it was working with providers to introduce trainee nurse associates to learning disability services, with the expectation some may later embark on nurse training.
“An apprenticeship route is key and we are working with employers and higher education institutions to deliver this,” said an HEE spokeswoman.
The Department for Health and Social Care said it recognised the need for more learning disability nurses and initiatives already under way or in the pipeline also include the fast-track graduate Nurse First programme launched in 2017 and £10,000 “golden hello” payments for 2018-19 postgraduate students taking up employment in the field.
The DHSC said it was working with the NHS and university sector to finalise the details of the latter, which will be set out “in due course”.
Some employers are offering financial incentives. For example, students who enrol on an undergraduate learning disability nursing degree at Hertfordshire University this September are being offered a £3,000 grant courtesy of Hertfordshire Partnership NHS Trust and Hertfordshire County Council.
Funding is important, stressed Ian Unitt, a third-year learning disability nursing student at Wolverhampton who came to the profession in his 40s, having previously worked in the rail industry. “I was lucky enough to get the bursary but it’s not even enough to cover my rent,” he said.
“Learning disability nurses do amazing work with people with a learning disability and we just need to recognise the value that brings”
Qualifications can also be a bar to suitable candidates getting places.
Despite working with people with learning disabilities and completing a foundation degree in health and social care, his course application was rejected “out of hand” by three universities because he did not have GSCE Maths and English.
“I have managed to get good grades so those universities are missing a trick,” he said.
However, he agrees perhaps the main barrier to recruitment is the fact many people do not seem to know learning disability nursing exists. “It’s about getting the message out to the right people,” he said. “People already working in care and support are a good place to start.”
Many have called for a targeted national advertising campaign, pointing out that current high profile campaigns to recruit nurses do not appear to feature learning disability nurses – neither do hospital dramas or television shows based in real NHS settings.
Others highlight the need to promote the specialty to young people thinking about future careers.
With this in mind, the RCN’s Learning Disability Nursing Forum is due to launch a short film specifically designed to be shared on social media and promote learning disability nursing to 14-19-year-olds.
As well as bringing in new people, there is a need to focus on retention, said Professor Northway. “It’s about support to make that transition from student to newly qualified nurse and then supporting people to develop leadership skills and explore their options,” she said.
“The best critics of our service and how worthy we are as nurses are surely the people and families we have served for 100 years”
There are now many more career options open to people who have trained as learning disability nurses, which should be used as a selling point, she said.
“There are still a lot of myths that go round – that’s there’s no future, no jobs,” she said. “What we’re actually seeing now is that when people qualify there are more jobs than students, so people are able to pick and choose.”
These include many interesting and well-paid roles outside the health service, pointed out George Matuska, clinical lead for intellectual disabilities for HEE’s south of England region and national lead for autism, who flagged up a tendency to focus on NHS-employed nurses.
“People only talk about NHS-employed and that really winds me up because they only represent a minority of the learning disability workforce,” he said.
He also highlighted a tendency to “talk to the converted” and not those from the rest of the profession who only have sketchy idea of the inspirational work learning disability nurses do.
HEE has been doing some work to support nurses in other sectors to develop skills and move into the field as well as supporting trusts to offer return to practice schemes.
However, one area that sector leaders said needed more attention was “return and retire” schemes, to avoid losing the expertise of experienced nurses who can then mentor and develop new recruits and help other gain advanced skills.
Efforts to promote the specialty include the Celebrate Me project, jointly commissioned by NHS England and the HEE London region, and led by the Foundation of Nursing Studies.
Via a series of social media and face to face events with frontline nurses and people who use services it has attempted “to try and understand more about what learning disability nurses are doing that makes them unique and special”, said Theresa Shaw, who chairs the advisory group for the project.
She said it had uncovered many “powerful” examples of truly transformational work with a report setting out a series of “aspirations” due to be published by the end of April.
Key messages include the fact the role – and learning disability nurses’ person-centred and holistic way of working – was highly valued by services users and increasingly by nursing directors who saw the potential for deploying this broad skillset in other services and wider roles outside of the specialty.
“We set out to create a new narrative for learning disability nursing but what we realised is that narrative is already there – learning disability nurses do amazing work with people with a learning disability and we just need to recognise the value that brings,” said Dr Shaw.
Video to support social care nurses with revalidation
Many argue the first step in raising awareness of learning disability nurses is to boost the public profile of people with a learning disability.
“We’re invisible and the client group is invisible,” said Helen Laverty, professional lead for learning disability nursing at the University of Nottingham, who said the profession needed to “stand up and shout that bit louder”.
In July, last year NHS Improvement launched learning disability improvement standards for trusts developed with service users and families as a new way of measuring performance.
Workforce is one of four key strands with trusts expected to have plans in place that “manage and mitigate” the growing shortage of specialist practitioners.
This could include supporting emerging roles such as advanced practitioners, apprenticeships, consultant nurses and clinical academic roles, say the standards, which are set to be rolled out to all NHS-funded care starting with independent learning disability hospitals.
Work around the standards has also involved showcasing good practice and the work of learning disability nurses, said David Harling, head of learning disability at NHS Improvement, including producing four short films where people with learning disabilities talk about the support they have received from their local learning disability team.
Service users are perhaps the best advocates for the profession, he suggested.
“The best critics of our service and how worthy we are as nurses are surely the people and families we have served for 100 years,” he said.
He added: “How might it look if we said to them ‘Tell us what you think an LD nurse should be about, should deliver and where they need to reside’? With that I think we’d create quite a different focus to what has to some degree been quite inward-looking.”
Above all there is a need for strategic direction at the highest level to bring everything together, according to Professor Gates, who believes this has been “appallingly managed” to date.
“Until we have a vision and, clear, strong leadership with authority at very senior level – and not tacked onto the end of someone’s job – then I suspect we’re just going to have this muddle,” he says. “There was talk of a learning disabilities minister and I still feel that’s the kind of thing you need to do.”
They may be cause for optimism in the long-term plan for the NHS in England with its emphasis on addressing health inequalities. Learning disabilities and autism is one of four clinical priorities.
Many like John Trevains, former head of learning disability and mental health nursing at NHS England and now director of quality at the 2gether NHS Foundation Trust, would argue learning disability nurses are “very much the engine room of delivering that improvement” with hopes they will feature prominently in the workforce implementation plan due to be published later this year.
According to new chief nursing officer for England, Dr Ruth May, there has “never been a more important and rewarding time to be a learning disability nurse”.
Learning disability numbers
Source: Jennifer Van Schoor