Learning disability nursing has a long history with many proud achievements. But it has also faced severe challenges. As the specialty celebrates its 100th anniversary, how does the future look?
A defining moment in the history of learning disabilities happened 100 years ago with the introduction in 1919 of the first designated training course for nurses working in the specialty.
It was established and administered by psychiatrists, and successful students gained a certificate in “mental deficiency” nursing. The language reflects the times which, compared to contemporary nursing practice, may not seem especially enlightened. But the course marked the start of steady progress towards a more humane and insightful attitude towards those once termed “feeble minded”.
The path from there to here has not always been smooth. Institutional care, well-publicised instances of neglect, and a persistent perception of learning disability nursing as a Cinderella service have blighted the specialty’s many achievements.
A BBC Panorama programme in May, aired during RCN Congress, exposed abuse of people with learning disabilities at a hospital in County Durham. The programme prompted an impassioned emergency debate at Congress where speakers roundly condemned the abuse which they said overshadowed the excellence of many services. They demanded government action to safeguard the human rights of people with learning disabilities, including more investment in staff with specialist skills.
Now a new threat hangs over learning disability nursing. The number of applicants has been declining for years but when the student bursary ended in England in 2017 it triggered a challenge that may prove difficult to resolve.
“Most of those who apply to be a learning disability nurse are mature students,” says Jonathan Beebee, who sits on the committee of the RCN Learning Disability Nursing Forum. “And if they don’t have a bursary, it becomes unaffordable for them.”
He cites recent research which found that 50% of universities were considering stopping their learning disability nursing courses. Learning disability nurses now make up just 3% of the nursing register.
Many of those who apply to be a learning disability nurse are mature students. If they don’t have a bursary, it becomes unaffordable for them
But there are other factors, apart from the bursary, that are changing the learning disabilities landscape, as Jonathan acknowledges.
NHS England’s Transforming Care agenda, which ended in March, aimed to establish mainstream services as the starting point for improving the quality of life of people with a learning disability.
Jonathan says the focus of Transforming Care was excellent and much needed, but questions whether its momentum will continue now the programme has come to an end.
And, he says, an unintended consequence of Transforming Care was that the learning disability nursing workforce has become fractured and partially hidden. Apart from the 3,500 nurses employed in the NHS, he says no-one is certain where the remaining 14,000 or so are employed.
“You won’t find us in traditional learning disability hospitals because that’s not what 21st century learning disability care is about,” he says. “But there isn’t a brochure anywhere that says this is what learning disability nurses do because we haven’t got the data on where all the learning disability nurses are.”
Jonathan Beebee with a colleague
Reversing the trend
Other challenges, according to a report by the Council of Deans of Health, include problems recruiting learning disability nursing educators and no clear career pathways for graduates.
But efforts are underway to reverse the trend. In the RCN South West region, for example, work has been undertaken to highlight the crisis in learning disability nurse recruitment, with an item aired on BBC regional news.
The problem is especially acute in the region because its last remaining learning disability undergraduate course, at the University of the West of England (UWE), was at risk of closure last September through lack of applicants. Student numbers had fallen from 30-plus to just 14 last year. “That doesn’t make a viable course,” says Kim Scarborough, UWE senior lecturer in learning disabilities nursing.
Prospects are brighter now, however, after local NHS employers sponsored their support workers to undertake the course. “We definitely wouldn’t be here if we didn’t have such good working relationships with the local trusts that provide our placements,” Kim says.
Although pleased the course is continuing for now, with at least 20 students expected to begin the course in September, she says sponsoring students is probably not sustainable. “I’m not getting the feeling this is a long-term plan. But it’s keeping us afloat at the moment and the university is really committed to continuing with learning disability nursing and practice.”
In the meantime, UWE, like other universities, is reaching out to schools and colleges to promote learning disability nursing and to encourage students who show an interest. The university also works with a learning disability theatre group to offer young people simulated work experience. And at university open days, learning disability nursing students and service users do a brilliant job in attracting potential applicants, says Kim. Those who do sign up tend to stay. Retention is not a problem.
The needs of people with learning disabilities are always going to be there, wherever they live, whatever decade, whatever century we’re in
The value of specialists
But the real tragedy of this continuing threat to undergraduate courses is that people who require the support, care and advocacy that nursing can offer may be jeopardised.
Laura Bond (pictured below) exemplifies the life-changing difference that skilled nursing can make.
Laura is a community learning disability nurse with a children’s service in Devon. She has worked in learning disabilities for more than 30 years and in that time has witnessed considerable change in the way services are delivered. Fundamentally, however, her role is unaltered.
“I strongly feel that the work I do and the people I look after, they remain the same,” Laura says. “The needs of people with learning disabilities are always going to be there, wherever they live, whatever decade, whatever century we’re in.”
Laura began working with Patrick Grattan and his family when Patrick was seven years old.
“When I met him, he was really struggling,” Laura says. “He was in mainstream school, which really wasn’t helping him at all.
“The only way he could communicate his needs was through behaviour, so a lot of my work at the beginning was to try and assess that behaviour and work out for him how I could help him in school, in clubs, in his life.”
At the time Patrick’s parents were finding it difficult to cope. Patrick was aggressive and sometimes violent, and when he wanted to play with other children his approach sometimes upset them, leaving him feeling rejected.
Support offered during his early years had fallen away and although a school nurse tried to give help and advice, she had no specialist training. “His parents were finding it really hard because the school was saying very negative things – not on purpose but just reporting back the things he was doing,” says Laura.
Making people feel safe
With time, patience and persistence, she helped Patrick see how his life could be improved. As with other children she works with, she told him she wanted him to be happy, smart and safe. “I do a lot of work around risk and I always add ‘safe’ at the end, and quite often that makes a child look up and think, ‘Hang on, this isn’t just someone saying you mustn’t do this or that’.”
Bit by bit, she gained Patrick’s trust. Respite, a change of schools, and Laura’s strong advocacy and persistence all contributed. Now, he’s at college and although he’s turned 18 she continues to see him and his family.
Patrick calls Laura a “dear friend”. “She’s been great,” he says. “She’s helped me through my problems and things would be very different without her.”
He describes techniques she suggested to help him in difficult times – when he was finding it hard to communicate his needs, for example.
And she was with him when he first went to college, easing him into unfamiliar surroundings. “She was just there to support me,” he says. “It was very useful. And college has been great for me so far. I’ve been learning so many skills, and made friends and relationships.
“Things are much better than when I was younger.”
Patrick’s mum Karen explains the huge value of having a learning disability nurse to advocate for the needs of her child
Patrick has always been lovable but at seven and eight he was like a whirlwind. He didn’t stop for anything. We had nine months of hell. If I asked him to have a shower at eight-thirty in the morning, by two-thirty he would have calmed down enough to do it.
People don’t understand what it’s like when your child’s having a nine-month meltdown. It was such a bad period and if Laura hadn’t been there, I think he’d be in residential care. I don’t think my husband and I could have coped.
Laura was like a terrier, helping me find the people we needed. She helped in talking to schools and to other health providers. She helped everyone listen to us and hear us. And she supported me.
It’s so hard when you have a child with special needs but it’s even harder when you have an adult with special needs because you have to scream and shout to get them what they need.
But Laura was always there, saying “Actually, this isn’t okay, he needs support”. And if things went wrong, she would help me put them right.
Everything she did was for the benefit of Patrick, so that he could have the best chance to do anything and everything. If he hadn’t had a learning disability nurse, I don’t think he would be anywhere near as well adjusted.
Find out more
Visit the RCN Learning Disability Forum pages to find out more about the specialty and the work they're involved in.