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Revealed: National plans to transform learning disabilities care branded as 'failing' by nurses

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Shortages of learning disabilities nurses are hampering long-drawn national plans to end the practice of vulnerable people being inappropriately sent away from their families for care, leading nurses have warned.

Their caution comes as a Nursing Times investigation reveals that NHS England is way behind on its pledge to slash the number of people with a learning disability and/or autism in inpatient facilities by up to half – with just six months to go until the deadline.

“We have a crisis in learning disabilities nursing currently and that’s not helping”

Joann Kiernan

The target was set out in the Building the Right Support report (see attached) published in October 2015 as part of the Transforming Care programme, which was launched in the wake of the Winterbourne View abuse scandal in 2011.

The updated pledge followed criticism that NHS England had been too slow with commitments to ensure fewer people with learning disabilities and/or autism needed to go into hospital for care.

The Building the Right Support report, developed in collaboration with Local Government Association and the Association of Directors of Adult Social Services, outlined plans to close 35-50% of inpatient beds by March 2019 and invest money into new services in the community.

At the time, 2,620 people with a learning disability and/or autism were receiving care in an inpatient setting. The authors of the report vowed to lower this to between 1,300 and 1,700.

However, latest figures from NHS Digital – analysed by Nursing Times – show at the end of September 2018 there were still 2,315 people with complex needs admitted to a hospital bed.

“We should be able to attract many more people into the profession than we currently do because there has never been a greater need”

Jim Blair 

Another promise made in the report was to “reduce length of stay overall”. But, according to the latest data, the average length of stay has actually gone up from 1,942 days in October 2015 to 2,016 days in September 2018.

In addition, the percentage of people spending five years or longer as an inpatient has risen from 34% to 37% over the same period, including 370 who had been in hospital for a decade or longer.

However, on a positive note, more inpatients had been discharged (170) than admitted (100) in September, with 67% discharged back into the community.

The document included a promise to develop an “appropriately skilled workforce to build the capacity to support people in the community”.

Yet latest data shows there are now 1,888 community-based learning disabilities nurses in the NHS – a drop from 1,899 in October 2015 and 2,341 in June 2011, when Winterbourne was uncovered.

Overall, the number of learning disabilities nurses working across both hospital and community settings in the NHS has fallen by 12% since Building the Right Support was released.

Joann Kiernan, senior lecturer in nurse education at Edge Hill University in Ormskirk and a learning disability consultant nurse Alder Hey Children’s Hospital in Liverpool, said there was not enough provision available in the community to support the plans, compounded by a shortage of specialist nurses.

She told Nursing Times: “The announcement, when it was originally made, was made with good intent. But I think the capacity of the community to support people was not necessarily available, which has resulted in people being unable to move back into their own communities so I’m not sure the infrastructure was there to support them to move back into the community.

“Improving the lives of people with a learning disability, autism, or both, is a priority for the NHS”

Jane Cummings

“There is a shortage of places across the country, there is a shortage of expertise, particularly learning disabilities nurses,” she said. “Inpatient facilities are very expensive environments, but at the same time with high level skills and I think we have a crisis in learning disabilities nursing currently and that’s not helping.”

Learning disabilities nurses were “fundamental” in discharge and community planning, she added.

Dr Kiernan, who has been in learning disability nursing for 34 years, said when people were admitted to an inpatient unit the team should “immediately” be working towards discharge through a “bespoke” and “holistic” plan of action that often spanned across health, social care and housing.

However, she added that difficulty in accessing funding to put all the necessary provision in place led to delays in discharge.

She said: “I think on admission people are working towards discharge immediately and that’s the correct way of doing it, however if there is not appropriate provision for people to be discharged to then that delays the discharge process and means that that person’s care ultimately is not continuing as we would want it to.

“For some of those people, that means being away from their families, being away from their communities that can support them, and that is not ever what we would want for somebody,” she noted.

Dr Kieran said she had been involved in the movement to transfer the care of people with learning disabilities from hospitals and institutions and into the community since it began in the 1980s and that much progress had been made since then.

However, she warned that the learning disabilities nursing “crisis” needed to be addressed to continue improvement.

“I think we have come a long way; the institutions are shut and that’s good, but we know we have a specific problem around the expertise particularly in LD nursing in relation to how many nurses we need to meet the needs of the population and the health inequalities as well,” said Dr Kieran.

“Families are deeply worried that the NHS will fail even to meet the bottom of the 35-50% reduction in beds promised”

Dan Scorer

She said she believed the removal of bursaries for nursing students in England was fuelling the decline in the workforce as the profession tended to attract older people who were less likely to want to take out a loan for education.

In August, Donna Kinnair, acting chief executive of the Royal of College of Nursing, warned that the decline in learning disabilities nurses and students was risking a return to institutional-style care.

At the time, Dame Donna said: “Without the specialist support provided by registered nurses, more patients may end up in institutions, away from their families and friends and shut off from society – this bleak Victorian image is not what care should look like in the 21st Century.”

Helen Laverty, professional lead for learning disability nursing at the University of Nottingham, also cited the shortage of learning disabilities nurses as a barrier to discharge from inpatient units. She told Nursing Times: “It’s got to be thought about in a global context as in the whole of England.

“In terms of that global context it’s about competing priorities and competing agendas of commissioners. If there is nowhere for somebody to go to, if there isn’t a robust support package for somebody to go back to because there aren’t sufficient learning disability nurses to support that programme, or there aren’t providers who are able to provide that support to the individual, then of course people stay where they are,” she said.

“It’s almost like we have the same analogy from seniors’ care where we see ’bed-blockers’ during the winter bed crisis, because there is nowhere for people to go to,” she added.

The figures show that in September 2018, 650 people who were in an inpatient unit did not need to be there according to their care plan, and of those 105 had experienced a delay in their transfer of care. Among the top reasons for delays listed were lack of suitable housing or residential care.

Dan Scorer, head of policy at learning disabilities charity Mencap, labelled the programme “failing” and criticised a lack of transparency around it.

He said: “Families are deeply worried that the NHS will fail even to meet the bottom of the 35-50% reduction in beds promised back in 2015.

helen laverty

helen laverty

Helen Laverty

“On top of that it is unacceptable that NHS England have for months been sitting on an independent evaluation they commissioned of the Transforming Care programme, which is likely to contain important analysis and learnings that need to be acted on to turn around this failing programme,” he said.

He added: “NHS England need to make an urgent statement on what will happen beyond next March, when this programme is due to end, how they will turn it around and whether it will be a central part of the new 10-year plan.”

Jim Blair, health advisor at the British Institute of Learning Disabilities, said it was “vital” that work on the Building the Right Support programme continued.

“People should not be spending long period of time outside of their ordinary living environment and away from their home and circle of support, it should always be for the shortest possible time,” said Mr Blair.

”That may be some time for some people, longer for others, but there should always be a key focus on getting people back to where they should be, which is close to their families, to their homes, to their environment and support networks,” he said.

“Services need to be at the core for assessments and treatments with short periods in the main stay and if people need to be there for a longer period then that needs to be clearly identified with rationale provided as to why that place is the right place for them, but also how can they still interlink and maintain a close link with their families, friends and loved ones within their communities so they don’t become dislocated from their own environment,” he added.

Jim Blair

Jim Blair

Jim Blair

As part of ambition to transform care for people with learning disabilities and/or autism, NHS England introduced “care and treatment reviews” for patients, which can be carried out in hospital or in the community.

Mr Blair said care and treatment reviews were “very important” in achieving the ambitions of the scheme and when taken place in the community could help to prevent people either returning to hospital or being admitted in the first place.

He also called for the profile of learning disabilities nursing to be raised to help tackle the recruitment issues.

“We definitely need learning disability nurses, whether we are going to get more is debatable because it’s whether people choose to do it, but I think we need to paint a different picture of what a learning disability nurse is, what the career pathway is and what the skill sets are, because we should be able to attract many more people into the profession than we currently do because there has never been a greater need,” Mr Blair said.

He added: “Learning disability nurses need to work across health social and education settings in order to address health inequalities and prevent avoidable deaths. Together with those with living and lived experiences we can get care right.”

When approached by Nursing Times, NHS England said there were now 20% fewer people with a learning disability only in hospital than in March 2015 with around 5,500 discharges into the community.

It highlighted that it had decommissioned more than 410 inpatient beds, unlocking £53m that would be given to local health organisations to support community-based initiatives across 2018-19.

It added that an additional £98.6m was being made available to support the initiative.

NHS England noted that 57% more pre-admission care and treatment reviews were undertaken in 2017-18 than in 2016-17, with 80% leading to a decision not to admit into inpatient care.

NHS England/NHs London

England’s chief nurse to oversee health service in the capital

Jane Cummings

The organisation insisted it was tackling the learning disabilities nurse shortage through a major recruitment campaign launched in July and a new postgraduate programme announced a year ago.

Jane Cummings, chief nursing officer for England, one of the leaders of the scheme, said: “Improving the lives of people with a learning disability, autism, or both, is a priority for the NHS and as better community alternatives have come on line there are now 20% fewer people with a learning disability in hospital than in March 2015.”

Winterbourne View was a private hospital in Hambrook, South Gloucestershire, owned and operated by Castlebeck. A Panorama investigation aired in 2011 revealed patients with learning disabilities were suffering physical and psychological abuse at the hands of staff.

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