Recent figures show that 60% of people with learning disabilities who are inpatients in hospital settings have been there for more than a year, despite promises of reform after the Winterbourne View. So, has anything really changed for the better?
When Care Services Minister Norman Lamb announced in December 2012 that nobody with learning disabilities would be inappropriately housed in institutional-type settings for long periods by June 2014, along with a raft of measures to achieve this aim, there was genuine optimism in the sector that much-needed change was coming.
But, 12 months on, it appears that little has changed on the frontline. Figures collated from the Health and Social Care Information Centre on September 30 2013 found that, of the 3,250 people with learning disabilities who were inpatients in hospital treatment centres, six in 10 have lived there for more than a year and, of those, more than a quarter have been resident for more than five years. Only two in 10 were reported to have been resident for three months or fewer.
It also appears that significant numbers are still being sent to facilities out of their local area: one in five people were placed more than 100 kilometres from their home.
In a joint statement, Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, said the “shocking” figures revealed: “… that the pace of progress has been distressingly slow. This is undermining the confidence of families in the government process as they are increasingly concerned it will continue to fail to protect their loved ones.
“We recently found out that 13 people who were at Winterbourne View are still in in-patient units and the census reveals that this is only the tip of the iceberg. If the Government cannot get it right for even the 48 people who were at Winterbourne View what chance is there for the 3,250 people stuck in similar units?
“We have been granted a once in a lifetime opportunity post-Winterbourne View to get care right. If the Government and local areas don’t stop dithering, we will miss this unique opportunity. In so doing, they continue to fail not only people with a learning disability, but everyone who saw or heard about what happened at Winterbourne View and demanded change.”
After this news, it was announced that Chris Bull, director of the Winterbourne View Joint Improvement Programme (WVJIP), which was set up to help commissioners transform care, had left the organisation, along with his deputy, Ian Winter.
Bull’s replacement is Bill Mumford, managing director of learning disability charity and support provider MacIntyre, who has been seconded to the WVJIP for 18 months.
For Andrew Holman, director of accessible information publisher Inspired Services, commissioners of services have to bear a lot of the responsibility for services. “They may be in an impossible situation having to implement cuts, but we can’t go making things worse for individuals or just storing up problems for the future,” he says.
“Putting social and health care monies together may improve matters, although it won’t get rid of the main issue for many areas: the lack of money being spent on good local social care. This is now down to cuts made by local politicians ignoring any central guidance. And learning disabilities will never be far from bottom of the spending pile.”
Holman adds that most people with learning disabilities and behaviour that challenges could have their needs met in the community by a good local service. “The problem is such services are being cut and, especially after they have done a good job and people’s difficult behaviour has reduced, standards of care go down, which means that people’s needs are not met,” he says. “They are then seen as needing specialist care, then that care doesn’t meet their needs, behaviours increase so these people are perceived to have major problems and need to stay in hospital and off we go again on the cycle.”
Change takes time
Mumford, speaking before his appointment from his own perspective, agreed that there is a feeling in the sector that little has changed since Winterbourne View, but noting that there are many organisations and individuals working to make change happen.
“I am aware there is a lot of activity going on in terms of moves towards shoring up community-based services so there will be less chance of people falling out of the system and having to go to assessment and treatment units, but it hasn’t been adopted yet,” he says.
“This does take time. There has been an acknowledgement that, while people at Winterbourne View were being abused and needed to be moved, the speed of moving them to a place of safety didn’t necessarily work out as the best move for them. This is not straightforward; people have a complex range of needs, and the support arrangements that people need aren’t always in place… to do it well takes time.
“Whether that masks inaction or inertia only time will tell. We may end up with a mixed picture – some areas will have got their act together and found solutions while others never quite make it and get distracted by other priorities.”
For Mumford, local leadership is the key to making change happen. “The examples I’ve come across in the past couple of years where there have been good local solutions have often been down to good local leadership and people who are just determined to get it right. Every area has issues, has structural change, etc – the difference comes down to good local leaders. We want to energise those individuals as much as possible in all areas.”
Mumford adds that while central government policy is needed to drive the change agenda it is down to local leaders to make it happen. “The whole programme has to be focused, more local, not national and that way we will see change on the ground, otherwise I think we are just going to be talking about it. It is a case of putting your mind to it.”
Mumford believes there is a financial imperative to make services more community-based. Once local area services have been built up, which can support people with learning disabilities and behaviour that challenges, it will reduce the amount of crises individuals face and provide better options for them.
“All the evidence shows it will save money in the long-term because assessment and treatment centres are ridiculously expensive,” he explains. “Person-centred, wrap-around local services are expensive by most definitions but are still significantly more affordable than assessment and treatment units, so it will end up saving local areas money.”
But while there is a drive to move away from the assessment and treatment model, there is still some uncertainty over what constitutes a good service, especially for people with behaviour that challenges, says Alicia Wood, chief executive of the Housing & Support Alliance. “People use the language and talk about driving up quality but I don’t think they really visualise what does it looks like for people with significantly challenging needs to live in their communities to have control and improve their lives.”
To try and achieve this, a group of service providers, the Driving Up Quality Alliance, came together in September 2013 to launch the Driving Up Quality Code, which asks support providers to ensure they aim beyond the Care Quality Commission’s (CQC) minimum standards to improve the lives of people in their care. It aims to ensure that another Winterbourne View-style scandal does not happen again.
“What really prompted the main content of the code was that we’ve got to go beyond meeting minimum standards,” Wood says. “We’ve got organisations that aren’t even meeting minimum standards but if we just keep to [the aim of] meeting the baseline minimum standards then people’s lives are always going to have major deficits and we’re not going to help people take control of their lives.”
Since the launch of the voluntary code 94 providers have signed up, along with seven local authority commissioners and one clinical commissioning group. Encouragingly, Wood adds that more are joining weekly.
Driving up quality
“I felt it was really important that providers took some responsibility nationally for driving up quality, that there wasn’t any policy makers telling them what to do.
“With all the scandals – Mid-Staffs, Winterbourne View – there is a real lack of trust in provider organisations, understandably, and the good providers need to stand up and say ‘we do a really good job, but we are flawed as any organisations are. We do get things wrong but we are not afraid to say so and we don’t hide.’ That’s really important.”
A key tenet of the code is getting independent verification of services by people with learning disabilities themselves. Groups such as the Q-Team, who started out as part of Southdown Housing Association, interview their peers and undertake quality reviews of services. Wood believes this is fundamental to making it work.
“We hope that through this code organisations and commissioners get a real vision for what is good and not good and that it makes a difference,” she says.
“We want to work with commissioners to only commission providers who are not only signed up to the code but are also self-assessing and getting independent verification. I’m keen on driving out poor providers; there are plenty of good ones in the sector.”
This provider-led initiative is indicative of the desire for change within at least some of the sector and there is a feeling that the process of change will accelerate towards the government’s June 2014 deadline. But as the recent case of Slade House, an assessment and treatment centre in Oxfordshire, which was assessed by the CQC as meeting none of the minimum standards, shows, there is still much work to be done.
Editor’s note: This feature appeared in the January/February 2014 issue of Learning Disability Today, before the recent NHS figures on the number of people still living in assessment and treatment centres. For more information on that, click here.