In this knowledge article, Nikki Walker and Philippa Shirtcliffe of Quality Compliance Systems (QCS) reflect on the Winterbourne abuse scandal and interview frontline workers, policy makers and charities to determine how much progress has been made to combat failings in the sector.
Nearly a decade has passed since a BBC Panorama documentary exposed a culture of systematic abuse at Winterbourne View. Thankfully, regulators have acted and much has changed since then.
The Government, the CQC and the NHS, asked searching questions which led to the creation of the Transforming Care for People with Learning Disabilities agenda.
The CQC has also made sweeping changes regarding registration criteria for new providers, actively encouraging co-production and overhauling its inspection process.
Quality Compliance Systems (QCS), a leading provider of content, guidance and standards for the social care sector has also had a role to play. Since we founded QCS in 2013, we have been working with thousands of providers to ensure that they have all the tools they need to deliver outstanding care to autistic people and those with learning disabilities.
It is a journey that has a long road ahead – there is still much to do. For example, ten years on, there are some homes where provision fails to meet the mark. As a society, we need to work harder to better understand the needs of autistic people and to help them carve out life-changing opportunities. Sadly, too few autistic people are in jobs. A study conducted by the Office of National Statistics (NAO) highlights that only 22% of autistic people were in paid employment.[i]
Featuring interviews with frontline workers, policy makers and charities, this article will explore the positive impact of compliance, guidance and best practice. We’ll also look at what still needs to be achieved and finish by celebrating some the outstanding work which is being undertaken by some extraordinary providers.
For many in the care sector, particularly the regulator, the Winterbourne abuse scandal exposed a failure to act. The inquiry found that the CQC had ignored the desperate pleas of a whistle blower, Terry Bryan, to investigate the abuse [ii]. Allegedly, Terry Bryan contacted the CQC on three occasions, but his claims were not listened to.[iii] The BBC also reported that even before its filing began, the local council had received 19 complaints by staff.[iv]
Most of all, the soul searching that followed focused on why the residents of Winterbourne View had been let down so badly. The scandal shone a spotlight on what for many was a blind spot. It raised many difficult questions. Why were autistic people and those with learning disabilities being looked after in these inappropriate settings in the first place? Why were they being placed under restraint? Why were they being deprived of their liberty under section, in ‘assessment and treatment’ units’? And most importantly, why were so many people admitted there without any real plan or strategy in place to reunite them with friends and family in community-based settings?
These questions, and many more, led to the creation of the Transforming Care for People with Learning Disabilities agenda, which was published in 2015.
A decade after Winterbourne – a view of the care sector
QCS consultant and Learning Disability Nurse, Laura Wood, who also works in senior quality and governance roles, says that provision for autistic people and those with learning disabilities has significantly progressed in the last decade.
Commenting on why the progress has been made, Laura Wood, said, ‘Since the Autism Act and the Transforming Care for People with Learning Disabilities agenda came into being there have been fewer hospital admissions and more people are benefiting from community care and support. The CQC is also playing a vital role to ensure that people are getting the right support and that systems are in place to underpin that support.’
Laura Wood also said that registering services for people with learning disabilities has become more stringent. This, she says, has been largely driven by the CQC’s report, ‘Registering the Right Support’ and the NHS’s ‘Building the Right Support’ . Both documents clearly set out the service model in which providers should be working towards. From the CQC’s perspective, this means checking that services are not only providing the right level of care and support; but are also committed to instilling the right culture in their services.
However, the sector is facing many challenges, particularly in relation to the Transforming Care Agenda and we must ensure that there are appropriate specialist services for individuals who require a higher level of support to avoid any unnecessary hospital admissions.
Adding context to this task, Laura Wood, explains, ‘New providers must now demonstrate that the home they wish to register has implemented the recommendations set out in the Transforming Care Agenda. Services also need to provide evidence of co-production. They should be asking themselves: do they have strong links to local mental health services, to GPs and to community-based services? Essentially, autistic people need to have the same access to the same services that everyone else enjoys. Only when this happens, will we be able to take a big step forward.’
That said, Laura Wood thinks that there is only so much that the CQC, who enforce the regulation, can do. She believes that Government – at national, regional and local level – need to devise a cohesive integrated strategy.
‘Creating link services that protect autistic people and those with learning disabilities is really important. If an autistic person is in hospital, who is assessing their options? Who is liaising with housing services to ensure, that when that person leaves hospital, they are provided with the right accommodation and have access to the right health care and social care services? As a society, I think we need to get better at realising just how complex, collaborative, and holistic, care packages need to be.’
A lack of education and training remains a huge problem
It is a view shared by Barry Price, a QCS Consultant and former frontline care manager, who has vast experience in supporting people with autism, learning disabilities, and acquired brain injuries.
He says, ‘One of the greatest challenges for the social care sector is to somehow find the funding to properly train staff in how to support autistic people with learning disabilities or people with severe learning disabilities.’
To illustrate his point, Barry Price draws on his own experience of communication challenges that need to be overcome when working with an autistic service user. He says, ‘One day, I volunteered to work in a sister service which was short staffed. An hour into my shift, I met an autistic person whose only form of communication was through Makaton, a form of sign language. I wasn’t familiar with Makaton at the time and had no idea what the person using Makaton was trying to convey. However, I could see that they were becoming more and more frustrated. I quickly called the manager and described the actions to her. Instantly, she understood what the person wanted, which was a screwdriver to fix a cassette tape. Once I provided it to him his mood instantly changed. In another setting, in different circumstances, where staff might have been less patient and less person-centred, it is not inconceivable that the person’s behaviour could have been misinterpreted for aggression, which may or may not have led to some form of physical intervention. That, in my view, would have been unacceptable.’
While Barry Price thinks that restraint is sometimes unavoidable – only when there is no other option – he believes it simply isn’t enough for care providers, who work with service users with complex mental health needs, to just follow CQC guidance. Barry Price says that in addition to accessing the QCS Reducing Physical Intervention Policy and Procedure, providers must gain accreditation with the British Institute of Learning Disabilities for training in Physical Interventions and follow the Restraint Reduction Network’s training standards. This, he says, is evidence that the CQC should ask every provider to document restraint (in any form). Secondly, he adds that accreditation should be a condition of CQC registration.
He adds, ‘Most crucially, restraint reduction needs to be weaved deep into cultural fabric of an organisation. It should not be regarded as a tick box exercise. Instead, the emphasis needs to be focused on treating everyone as an individual, understanding the triggers that lead to distress and intervening early on. Guidance and best practice should be continuously updated.’
QCS has published several policies including an Autism policy and procedure, guidance around whistleblowing and safeguarding, and another around positive behaviour support.
National Restraint Register urgently needed
Even with more compliance, content, education and training in place, Barry Price said that regulators need to take the lead in creating a National Restraint Register. But – how would this differ from the Mental Health Unit’s (Use of Force) Act 2018, or Seni’s Law, which has already been mandated?
Barry Price explains, ‘Seni’s Law currently collects some of this data, but not all of it. For example, the legislation states that mental health facilities are only required to record force that they consider to be ‘not negligible’. This raises two issues. The first is that it begs the question, what is meant by not negligible?[v] Potentially, this is a grey area that could be taken advantage of by an unscrupulous provider. Leaving the responsibility to report to providers might give a tiny minority the power to facilitate abuse. Therefore, I think regulators need to go much further and make it a legal requirement to log any restraint of any kind including the use of chemical restraint. If it was made compulsory to do so, as a sector and as a society, we might be shocked to the core at the extent in which restraint is currently being used unnecessarily and inappropriately.’
Tim Nicholls, The National Autistic Society’s Head of Policy and Public Affairs, agrees that a lack of training and education – not just in restraint – but across the board – is a huge issue. Currently, training is a requirement of the Autism Act and the Mandatory Training on Learning Disabilities and Autism Bill has called for a code of practice to be published for specialist training on learning disability and autism. Even with the new legislation, Tim Nicholls says the great challenge we face is that too few staff understand what it is like to be an autistic person. We think that every professional carer, who looks after an autistic person, should have training in autism.
‘Commissioning needs to change’, Tim Nicholls believes that even after the Winterbourne View inquiry and subsequent scandals, such as the Whorlton Hall investiation, autistic people are still not getting the right support.
Tim Nicholls added, ‘The reality is two thirds of autistic people say that they do not get the support that they need in the community. This means that sometimes autistic people are placed in secure units when there are gaps in housing provision. Troublingly, there is also a shortage of crisis intervention services, which mean that often it is carried out at the last minute to avoid detention under the Mental Health Act. The big commissioning challenge moving forward is to tackle unmet need. Creating more services that offer mental health support when autistic people become anxious or depressed would be a positive first step, as early intervention can prevent bigger problems down the line.’
Securing meaningful jobs and forging careers still a big challenge
Another key pledge of the Autism Act is to secure a greater number of opportunities for autistic people to secure paid employment. While Laura Wood believes that charities such as The National Autistic Society have succeeded in raising public awareness of the condition, she believes that Government needs to work harder to provide autistic people, and those with learning disabilities, with training and more career openings.
One supported living provider that’s providing job opportunities for autistic people and those with learning disabilities is 1st Enable Ltd. Founded in 2012 by former NHS assessment treatment staff, the organisation, which supports approximately 250 people, works on the principle that hospitals and other registered services were often not the right environment to give people opportunities.
Jeff Dawson, 1st Enable’s CEO, strongly believes that people with autism and/or learning disabilities should be treated as equal participants in society and should not just have the same rights, but the same opportunities as everyone else.
1st Enable is based in Cheshire and also provides services in the North West, the North East of England and Wales. The provider found that many of the traditional day services left those that the organisation supports feeling ‘tired, bored and unenthused’.
Jeff Dawson, said, ‘We noticed very quickly that the day services were not meeting people’s aspirations. Therefore, the first thing we did was sit down with the people that we support to find out their hopes and dreams. We then spoke to the local commissioners in our area and worked closely with them and the people we support to ensure that their aspirations could be met. It quickly became apparent that many of them didn’t want to be wrapped in cotton wool or be hidden away from society. Many people wanted to work.’
While some people remain happy to volunteer, 1st Enable believes, wherever possible, they should be paid for the work they do.
‘As an organisation, supporting aspiration and achievement is deeply rooted in our DNA’, says the CEO, ‘The people we support are on journey of discovery and we’re on that journey with them. Our job is to help them to realise their ambitions – whatever they are. (They might not be work related, for example). But, if they feel empowered to seek a job, we will work with them to ensure that the job is right for them, that they are properly supported, and, most importantly, not exploited.’
Creating a sustainable work strategy
Jeff Dawson and his team met to devise a sustainable and workable strategy; but it wasn’t until he took a walk on his local high street that he had his ‘Eureka’ moment.
He says, ‘In Ellesmere Port, one of the towns that we’re based in, like so many other places, Government cuts to services are very visible. The local library, for instance, had lost a café. It was a real wrench for the regulars who visited it, as they would have a coffee, or a slice of cake perhaps, as they met with friends or read the books they had borrowed. When I told the story to my staff, that’s when we had a collective flash of inspiration. What if the not-for-profit enterprise was to take over the library café and our service users ran it?’
The idea was shared with the council who ‘were very receptive’. Jeff said that as the café wasn’t being used, 1st Enable could pay a nominal rent. The service is sustainable, and they are able to pay their service users who run it an hourly rate, which is just above the national minimum wage.
1st Enable is also working in partnership with the Action Transport Theatre . Some of the people the organisation supports ran a café on behalf of the theatre, which is based in Ellesmere Port.
Currently, the theatre is undergoing a makeover, but once it is completed, 1st Enable is looking to run the box office and restaurant.
In addition, as a part of a new venture, 1st Enable has also begun identifying several local businesses, who have lost workers due to Brexit. According to 1st Enable’s CEO, Jeff Dawson, many organisations require staff where limited skills or experience are greatly valued.
So how does the business model work and how does it create a career pathway for 1st Enable’s service users?
Jeff Dawson explains, ‘For example, we’ve worked with a local charity to devise a fairly innovative model. Essentially, we hire a member of staff directly from that employer. That person receives comprehensive autism and learning disability training. They are then sub-contracted back to the employer but are line managed by one of our senior managers. The person then has the skillset and experience to supervise the people that we support. This enables the organisation and that in turn, creates a safe environment for them.’
While Jeff Dawson says that there have been some ‘bumps in the road’, he believes, that 1st Enable’s approach is also proving to be a progressive model for local authorities and commissioners, as well enriching lives of its service users.
He explains, ‘More often than not, secure units are inappropriate places for autistic people with learning disabilities. Several of the people we support would see their long term ‘home’ as the hospital or secure unit. Coupled with low mood, they would often require medication. We have first-hand experience of helping the people we support to navigate a clear pathway out of hospitals and into the community. As a result, some are no longer taking any medication and, in some cases live their lives without any support.’
It is rewarding outcomes like this and the chance to transform lives that drives Jeff Dawson and his employees. Whenever Jeff has a bad day, he says that he remembers what a mother, whose daughter uses 1st Enable’s services, said on a recent documentary. The programme, which was called ‘Home Free’, aired on Channel 4 and detailed how 1st Enable helped service users to profoundly change lives.
Reflecting on the impact 1st Enable’s services had on this particular family, Jeff said, ’When the young adult’s mother was interviewed, she said that medical staff had told her that her daughter, who has severe learning disabilities, would never be able to live independently. But her daughter has proved her doubters wrong. She cooks for herself, pays her own bills and has taken responsibility for her tenancy.
However, what really stands out in addition to the extraordinary story, is the joy and deep sense of pride that the girl’s mother feels for her daughter’s remarkable achievement.
’It was an incredibly poignant moment and one that gave my staff and I fresh motivation to want to achieve even more.’, Jeff recalls.
Also, this account perhaps provides tangible evidence that after the Winterbourne View inquiry nearly a decade ago, and following the reforms that have followed, lives are being changed for the better.
Quality Compliance Systems (QCS) is a major provider of content, guidance and standards for the social care and health sectors. To find out more about QCS, contact our compliance advisors on 0333-405-3333 or email firstname.lastname@example.org.
Nikki Walker is QCS’s Chief Executive Officer
Nikki leads QCS and is accountable for growth targets and enabling QCS to scale. She is the guardian of QCS culture and coach to QCS staff. Nikki has had a broad career with over 20 years’ experience across diverse industry sectors. She has operated at board level for market leading FMCG and Technology companies overseeing Finance, Strategy, Operations and Culture.
Philippa Shirtcliffe is QCS’s Head of Care Quality
Philippa started her nursing career 30 years ago in Leeds. For the last 20 years she has worked in social care, starting out as an Area Manager managing several home care branches and extra care schemes. Her career to date has been varied, undertaking both operational and strategic leadership roles that have included national business development and the development and implementation of reablement and intermediate care services.
[i] People Management. Shocking data reveals only 1 in 5 autistic people are in employment By Lauren Browne, 11th, March, 2021
[ii] BBC News. Timeline: Winterbourne View abuse scandal Date: 10 December 2012
[iii] Fighting Monsters. Undercover Care: The abuse exposed – A Review of Panorama Date: 1 June 2012
[iv] BBC News. Winterbourne View: Care workers jailed for abuse Date: 26 October 2012