By the end of this month all residents from Orchard Hill, the last long-stay facility for people with learning disabilities, will move into the community, a difficult process for residents, families and staff. Louise Tickle finds out whether it has been successful
Leaving your home for a new one is never easy. It’s even harder when you’ve lived there for decades. If you have a learning disability you may also be confused about why you have to move in the first place, so the prospect of packing up is likely to be distressing in the extreme. And when you’re told you are moving, then that the move is off, then on again, then off, for years on end, then uncertainty compounds the upset.
However, by 30 April 2009, Orchard Hill, the last remaining hospital housing people with learning disabilities, will finally have met its closure deadline. By then, its last long-term residents will no longer be receiving institutionalised medical care, but will instead be supported to live in the community via a social care model that aims to offer a level of control over their own lives that none will have experienced before. And meeting the deadline means that those managing the process will have secured the maximum possible funding for accommodation and staffing.
By January 2007 there were 99 residents at Orchard Hill. Now, 79 have already left and are being supported by Choice Support, The Avenues Trust and MCCH. Accommodation is in a mixture of supported independent living and registered residential provision.
Although the final 20 service users will temporarily remain in Orchard Hill bungalows (the purpose built apartments are not yet ready) they will have their own tenancy agreements, and the staff caring for them will have their terms and conditions transferred from the NHS to the local authority. Residents will have to be treated as though they are living in their own homes, quite simply, because they are.
Getting to this point has been a long and traumatic road for all involved – the residents, their families, the staff who look after them and the 10 local authorities and nine primary care trusts responsible for their care. The closure of hospital-style care homes which segregated hundreds of people with learning disabilities from the community has long been government policy. But when plans were made to close Orchard Hill the news created levels of anxiety that were, say the professionals involved, unprecedented in their experience of carrying out many other such closures.
Two judicial reviews of the closure decision were sought by angry family members, to no avail. Added to this, suspicions of abuse at Orchard Hill meant that by summer 2006, a Healthcare Commission investigation of the hospital’s care standards was underway. In early 2007 it reported significant and endemic abuse of the home’s vulnerable residents.
Into this maelstrom stepped Shaun O’Leary (pictured), the man whose job it has been to oversee the final closure. When he took up post as head of learning disability services for the Sutton & Merton Primary Care Trust and Sutton Council in summer 2006, he knew that he was launching himself into a complex political situation, complicated by powerful shockwaves of emotion.
“By 2007 residents, relatives, carers and staff were in a state of grief,” he says simply. Understanding that grief process and supporting people through it has been a central element of his role.
Some relatives felt that promises made in the first judicial review had been betrayed. Staff who worked at Orchard Hill didn’t know if they were about to be summarily sacked. And the service users themselves, disempowered by years of being institutionally infantilised, were in turmoil at the prospect of such a huge upheaval in their lives.
Persuading people that good outcomes were possible has been managed, O’Leary emphasises, only by an immense amount of hard work, goodwill and creativity shown by all three service providers. Senior management teams at the PCTs and local authorities involved have given their unstinting backing over the past two years. Not every single person is yet convinced, but he maintains there has been a major turnaround in attitudes.
“One woman who called me a murderer at first, has since come up to me to say thank you,” says O’Leary. Seeing the way service users have thrived in their new environments has helped families accept the changes, he says.
Fear of change is perhaps inevitable, suggests Steven Rose, chief executive of Choice Support, whose organisation will ultimately support 40 service users.
“When any hospital closure is announced, there are instantly three powerful agendas that have to be dealt with,” he says. “With the service users, it’s all about addressing a carefully worked out person-centred plan that each individual really understands and is signed up to. One of the mistakes in early hospital closures that has been learned from is to make sure friendships and relationships are maintained. In that first closure, lifetime friendships were broken up on the basis of what borough you had lived in.”
The second interest group is families. They, Rose says, are overwhelmingly concerned about whether their son, daughter or relative will be able to live safely in a community that is not necessarily caring of or forgiving towards people who are different from the norm.
Finally, there are the staff. “They’ve got three questions: do I have a job, is the pay the same, and what about my pension?”
Can Rose always reassure understandably anxious employees? “We’ve probably transferred about 800 staff in all the years we’ve been doing hospital closures, and occasionally there’s been the odd dissenter, but we’ve never had an employee tribunal case,” he says.
Experience shows, observes Gordon Boxall, chief executive at MCCH, that “many staff will blossom by working in more rewarding ways”.
“On the whole, people find that working in the independent sector rather than the health service is quite liberating,” agrees Rose. (Pictured: Emily Moss who moved out of Orchard Hill and into Lulworth residential home for disabled adults with learning disabilities in Worthing, Sussex in 2007)
It may be liberating but it requires hard work to change ingrained ways of thinking about how to treat people with learning disabilities.
“A lot didn’t realise they were doing anything wrong,” says Paul Regan, who is overseeing the implementation of the transfer of services for Choice Support.
Transforming the mindset of people who have worked in a certain way for years is clearly not an easy ask. But the overarching goal has been to help staff see why moving from a medical to a social model of care is so important to the life opportunities of the service users.
To this end, a staff consultation was carried out in 2007-8, which challenged employees to look at how they currently support service users, and consider other ways of doing this that might be better.
Major retraining has had to be carried out around the values and principles which underpin a social care model that supports people to flourish in the community where they are to live.
Non-medical staff have learned how to administer medication, a job that was previously done only by nurses. There has also been training in food preparation and hygiene so that service users can be supported to choose and appreciate ingredients, decide on their own meals, and then prepare their own recipes – or, if they are not able to do so, at least exert influence and choice over this vital aspect of independent living.
This, Regan points out, is a particularly meaningful change for people who for decades had never exerted any choice over what they ate mass-cooked meals were still being wheeled in to Orchard Hill dining rooms in December 2007.
Job titles and job descriptions were also changed no medical titles such as “nurse” are in use any more.
“There have been lots of changes in targets, intended to encourage staff to get service users out into the community and doing more activities,” says Regan. “Those targets were and continue to be met.”
It sounds like an awful lot of learning in a fairly short space of time, but Regan says there have been no redundancies, voluntary or otherwise. “The majority were on board, because after the Healthcare Commission report they realised there had to be significant change.”
The point of all this, as O’Leary points out, is to ensure that people who have been shut away from all the potential richness of a life lived alongside other people can fulfil their potential.
“When we planned this, we were not planning a move, we were planning a lifelong commitment to make lives different,” he says forcefully.
“We’re designing a lifelong service, where infrastructure in the community supports that service and where we have a whole health service workforce transferred to the council to provide that integrated service. People were told they could only ever live in closed communities, protected, but now they can and enjoy thriving lives in busy suburbs. It’s a triumph of the human spirit, and it doesn’t need to cost any more.”
JENNY KNIGHT and BRIAN LAWTON Advocacy Partners
‘Many have had a dramatically improved quality of life’
So, is the aspiration of independent living truly being lived out by former Orchard Hill residents?
Most are unable to speak for themselves, so Jenny Knight and Brian Lawton from the independent organisation Advocacy Partners, who have worked with service users and their families, speak on their behalf.
They confirm that for the large majority, moving from Orchard Hill has been a positive experience. “Some people, including those who have experienced major change, have had a dramatically improved quality of life in a very short space of time,” says Knight.
The challenge, she says, was to ensure that each individual’s move and the services that were put in place were genuinely based on that person’s views.
“That has not always been easy. We have had to emphasise the need to respond to each person, even when this might make the overall process harder. At times, our duty has been to resist ‘one-size-fits-all’ solutions and push for more person-centred approaches,” says Knight.
The slow closure process, Knight explains, resulted in people spending far too much time in an institution that was being run down. And despite the delays, she says plans for some service users were rushed, giving rise to tensions between those wanting to sort things out quickly and the right long-term decisions being taken.
For many of those who have made the move, though, life has improved out of all recognition, says Steve James, chief executive at The Avenues Trust. His teams currently support nine people who moved into their own tenanted flats in the autumn of last year. They will soon be working with 20 in total.
“This is the first time people have been moved from hospital to their own flats in one jump. All the things you would ordinarily do, like buying food, they’re doing. They have their own front door, their own locks, and when I go round to the flats, they’ll invite you in if they want and they’ll tell you no if they’re busy. This is their space now. They already understand that, and they’ve not been there a year.
“There are people there who have shown significant challenging behaviour that is already beginning to diminish,” he says. “It’s too simplistic to say they displayed challenging behaviour because of boredom and frustration, but I do wonder.”
Amid all the delays and associated aggravation, what has heartened him the most?
“It’s the small things. When one lady moved in, she brought a telly, and it took her a couple of days to realise she had complete control over what she watched.”
Published under the headline ‘The sun finally sets on Orchard Hill’ in the 2 April 2009 edition of Community Care