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Autism services are ‘letting people down’

People with learning disabilities and autism spending too long in assessment and treatment units

When Tianze Ni, a young man with autism and occasional behaviour problems, was admitted to hospital for assessment it was supposed to be for a maximum of six weeks.

Picture credit: SPL

Yet two years later he is still in hospital and there are no immediate plans for his discharge. Tianze is desperately homesick and his family is distraught.

‘The government promised that people with autism would be given the best possible care in the community,’ says his mother. ‘Instead Tianze has been severely let down by the institutions who are supposed to be helping us and he needs to be back with his family where he belongs.’

Tianze’s experience is far from unique. In fact, the latest annual census showed that 3,000 people with learning disabilities were inpatients in assessment and treatment units (ATUs) in England, with the average length of stay more than one-and-a-half years.

Meanwhile – and some would argue this is not unconnected – a new RCN report reveals that the number of NHS learning disability (LD) nurses in England has fallen by one third since 2010, as has the number of training places.

Yet everyone agrees the situation is unacceptable. A succession of policy initiatives has sought to ensure people with learning disabilities are cared for in the community, recognising that institutions are inappropriate except in times of crisis.

In 2011 the government pledged to end all inappropriate hospital placements by 2014, but the deadline was missed – and we are still waiting.

The latest target, part of the Transforming Care agenda, is to halve the use of inpatient provision by 2018/19. Six fast-track areas have been set up to accelerate progress and measures are being introduced to keep stays to a minimum. These include the right to challenge inpatient admissions and stays through Care and Treatment Reviews (CTRs) and an expectation that discharge planning should start from the point of admission.

Some progress has been made as a result. The number of CTRs had topped 2,000 by September 2015 and more than 750 people had been discharged or transferred in the previous six months.

If you’ve got autism you need routine – taking it away can cause more problems than it solves

Despite this there are few signs that overall inpatient numbers are declining significantly. A situation appears to have developed in which each time a person is discharged, another is admitted. The figure of 3,000 people with learning disabilities in ATUs in September 2015 was just 200 fewer than in the previous two years. Of these, nearly one third did not require inpatient care according to their care plan, 43% had been in hospital for between one and five years and 70% still had no date set for their transfer to a community setting.

Support’ed is a small organisation in Plymouth, Devon, that supports people with learning disabilities to live in the community despite complex behaviour problems.

Funded by social care, the team consists of a specialist learning disability nurse and two social workers backed up by 17 full and part-time support workers.

At present the service, which began last year, is responsible for the care of three people who might otherwise be in institutions because of their challenging behaviour.

The team spends a lot of time with the individuals before creating packages of support designed for their particular needs.

This includes choosing the most appropriate placement as well as deciding on the level of support. Often this could work out at a staff-to-patient ratio of two to one.

Positive behaviour support (PBS) is a fundamental part of this approach, says director Robin Vacquier. ‘It’s absolutely integral to the work we do. You must have that trusting bond as opposed to one that is more about control and containment.’

One way to keep his clients out of hospital is knowing the individual and having the confidence and expertise to allow risks to be taken, within safe limits, he says.

‘We work together as a group of professionals to get it right and are able to share the risk,’ he says.

Working closely with other members of the community learning disability team ensures providers do not feel under pressure to move people out of their normal environment when things go wrong.

Mr Vacquier is ‘100% confident’ that Support’ed has significantly improved the quality of life for its clients. ‘We are supporting people in their own homes or communities.’

One of his clients, for example, enjoys visiting the zoo. ‘He loves exploring nature and going to lakes and beaches and because we look after him he gets access to that every single day,’ he says. ‘He would probably miss out on these things if he was in an assessment and treatment unit.’

So why is this happening? A large number of those in ATUs have extremely challenging behaviour and are often admitted because families or community services cannot manage their behaviour any longer and are concerned about safety.

But, as nurse consultant Jonathan Beebee notes, if the cause of the problem behaviour has not been addressed, it is unlikely that a treatment unit will improve matters – and it could make things worse. ‘While they are in confinement the behaviour can be contained but moving them back into the community is a huge step. And often nothing happens.’

The longer someone with autism or learning disabilities stays in an institution the more disturbed they can become, and the less chance there is of them being discharged.

That was Mark Neary’s experience. His son Steven has autism. Two years ago Mark had flu so Steven was admitted to a nearby unit for respite care. But because he was becoming unmanageable, he was transferred further away. It was another year before he was discharged home.

‘From the beginning they took the position that his behaviour was very challenging so he must be like that most of the time and therefore it wasn’t safe for him to be at home,’ says Mr Neary.

Yet the opposite is often nearer the truth. ‘For people with autism, routine is the most important thing in keeping anxiety at bay. So to respond to a crisis by taking them out of that routine is taking away one of their foundations and causes more problems than it solves.’

Mr Neary accepts that some people still need to be admitted to inpatient accommodation for treatment on a short-term basis. But, he adds: ‘They have got to live up to their name. People should be admitted and treated and then allowed to get on with their lives.’

It is also clear that many people with learning disabilities remain in these units not because they require further treatment, but because of difficulties in placing them back in the community. One reason for this, suggests Mr Neary, is that ATUs are funded by the NHS, while community care is usually paid for by local authorities.

‘What seems to be happening is that units want to discharge a person but there is no incentive for local authorities to find alternative accommodation because that means they will have to pick up the tab.’

This is compounded by the fact that many community services are simply not geared up to handle people with challenging behaviour.

Many feel nursing holds the key to resolving this impasse. ‘Learning disability nursing has the potential to lead that process of deinstitutionalisation,’ says East Kent Hospitals University NHS Foundation Trust practice development nurse for people with learning disabilities Daniel Marsden. ‘For nursing to provide a lead, we will need investment in education and training to support that development.’

The RCN agrees. ‘Specially trained learning disability nurses are part of the solution, are key to delivering personalised care and can lead the way in providing positive behaviour support,’ it says in its report Connect to Change.

Yet at a time when the need for specialist input seems greater than ever, latest figures indicate that the number of LD nurses in the NHS has plummeted. The number in England has fallen by 31%, from 5,488 to 3,762, in the past five years. Meanwhile, training places dropped by 30% between 2010/11 and 2016/17. Workforce projections suggest those numbers will have declined further by 2019.

2,155 people (72%) were given antipsychotic medication in the 28 days before the census date

735 people (24%) had self-harmed

380 people (13%) were secluded

1,190 people (40%) had been in their current service for up to a year

554 days was the median average length of stay, compared to 547 in the 2014 census

510 people (17%) had been in their current service for five years or more

670 people received care more than 100km away from home

£3,563 The average weekly cost per person of an ATU placement

Source: census information on learning disability inpatient services, September 2015

There is a worrying gap between workforce planning and service delivery, says the report. This is compounded by the fact that the workforce is spread across so many sectors, with the vast majority now working in the private and independent sectors.

Yet the factors responsible for the declining number of LD nurses could be exacerbated in the next few years with a proportion due for retirement and new recruits deterred by the replacement of bursaries with student loans.

For that reason some believe we will have to accept a different skill mix in future, with LD nurses and other professionals taking on increasingly specialist leadership roles, overseeing an ever-larger non-registered workforce.

George Matuska, a lead nurse for learning disabilities who has produced a report on the LD workforce in Kent, Surrey and Sussex, sees this as the most likely model for the future.

A smaller body of specialist LD nurses would become leaders of larger teams of non-registered staff. ‘This unregulated workforce would be the group that will need to be supported, nurtured and given greater consideration.’

If we don’t want people to go into hospital community care has to be properly provided

However it pans out, a key technique for those caring for the most challenging individuals needs to be positive behaviour support, or PBS, says Mr Beebee, who runs a nurse-led social care group, PBS4, in Southampton which helps place and maintain people in the community.

‘Most services in the community find it difficult to cope with people who have challenging behaviour and that often means they are admitted to hospital.

‘If you want people not to use hospitals then you have to have proper alternatives. Instead of closing hospitals let’s get community services right and ensure better local provision.’

But for Mr Neary the fundamental requirement is even simpler: an interest in, and commitment to, the individual.

His son Steven is now living happily at home again, cared for not only by his family but a team of privately funded support workers. ‘We didn’t have many problems finding his support workers,’ he says. ‘My criteria were: Are they interested in him? Do they care? And are they professional in their approach?

‘Ultimately I wasn’t that interested in how experienced they were with autism and learning disabilities. I wanted them to tune into Steven’.

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