By Jack Skinner and Claire Webster
Ten years ago, BBC Panorama exposed the horrific abuse that staff at Winterbourne View hospital had inflicted on people with learning disabilities who were supposed to be receiving assessment, treatment and rehabilitation. A police investigation lead to 11 criminal convictions, a national outcry and a formal government response on the serious failings highlighted.
A series of investigations found that:
- More than half of the people there were over 40 miles away from where their families lived.
- There were over 500 reports of restraint used in a 15-month period.
- Patients at Winterbourne had informal hospital stays inappropriately converted into formal detentions under the Mental Health Act.
In 2012, the government launched the Transforming Care programme, which aimed to significantly reduce the number of people with a learning disability or autism in hospitals and assessment and treatment units (ATUs), and ensure they received good-quality care and support in their own communities instead.
Have we made progress?
Ten years on, have we made any progress in improving the support available to people with learning disabilities, reducing risk of abuse and, ultimately, moving away from large institutionalised settings as a go-to support mechanism?
Tragically, there have been further, and recent, cases of abuse of people with learning disabilities or autism in settings similar to Winterbourne View, such as Yew Trees (2020) and Whorlton Hall (2019). NHS figures state there are still over 2,000 people waiting to be moved. There also remains a question about a general dependence on institutionalised care that is far from family and support networks.
Hearing about some of the successful moves out of hospital, like that of Beth, goes to show the night-and-day difference that can be made when people work together to achieve a common aim.
Social workers’ key role
The key to getting it right often lies with the social worker
Socal work works brilliantly when we build relationships with people. We love this quote from Professor Sara Ryan, a disability studies academic who has become a leading campaigner for the rights of people with learning disabilities after her son, Connor, died, entirely preventably, in a hospital in 2013 “… what do health and social care professionals and students need to know about our families? The answer is: we are all human” (Love, Learning Disabilities and Pockets of Brilliance, 2020).
With a human rights focus, social work can ensure that home, family, happiness and love are central to decisions made in a person’s life.
Challenges in practice
However, this can be very challenging, in our experience. When people are placed in hospitals far away from the local authority it’s harder to build that fundamental relationship with the person and discover first-hand how best to build the right support around them to live the life they want.
When the Court of Protection is involved, proceedings can sometimes go on for months and years rather than days and weeks. All the while, the person is still in a place they don’t call home.
There are always resource implications for working with people in hospital settings, and because there is often no discharge date it can often be drawn out as the person is seen to be ‘safe’.
When the risks are perceived as high, and the multidisciplinary team are conveying the severity of what might happen if they are discharged, it takes a strong-willed social worker to advocate for lessening of restrictive practices.
It’s sometimes the case that skilled support is hard to come by. A good support agency can be the difference between a plan for community-based support working flawlessly or failing, for example, if the agency pulls out with very little notice.
Maintaining a human rights focus
Throughout the academic journey of social work, you will be introduced to the idea of the profession as a vehicle for social change and the need to critically analyse and reflect on your practice experiences.
A strong team – one that encourages innovation and promotes social justice – can nurture the requisite ethos to improve support for people with learning disabilities or autism.
In some teams, you quickly become familiar with a transactional approach of: referral received, visit, complete assessment, complete support plan, set up a service to support a person, plan a review date.
In order to maintain a human rights focus, you almost need to memorise the sequence required to ‘complete’ a process but have that in the background while making sure, in the foreground, you are listening, observing and building trust, and working to ensure the person is at the centre and forefront of the process.
The challenge that arises is securing the right support, at the time someone requires it, at likely the most difficult point in their life. Balancing the wishes and feelings of the individual and their families with available resources can be a challenge, but the skill really lies with a social worker’s ability to work through it with the person, working together to find solutions.
Health and employment inequalities
People with learning disabilities or autism continue to experience inequalities in both access to healthcare and employment, two huge factors that affect their socio-economic experience and lead to much lower life expectancy than the general population.
It is often the case that regular appointments are not followed up, either because things were not considered as urgent or because it was deemed in the person’s ‘best interests’ not to pursue further medical intervention.
The pandemic has further highlighted this, with the blanket applications of DNACPR (do not attempt cardio-pulmonary resuscitation) orders and a high rate of Covid-related deaths, owing to a delay in prioritising vaccinations. Couple this with minimal oversight due to visiting restrictions, and you find a perfect storm of increased risk of abuse and deterioration, both on a physical and an emotional level.
Although we have made some progress in the availability of community support for people with learning disabilities and autism, it has not yet gone far enough to make sure that opportunities are available for a person to live in their own home with the care and support that enables them to live flourishing lives.
Our top tips, based on our experience are:
- Don’t be afraid of the law – the laws that govern these situations are primarily there to protect and empower people, but ensuring that you are up to date with legislation and guidance, and acting within the spirit of the law, is so important in ensuring people have the intended support and scrutiny over decisions that are made.
- Strong advocacy – having great advocates can be indispensable. Build and nurture relationships with advocates. Make them your critical friend.
- Working in partnership with health colleagues – have good conversations about rights and risk enablement. Those honest conversations are absolutely essential in order to work towards achieving what the person wants. There is no one size fits all. Labels are for clothes, not people
- Professional curiosity – always look past the task in hand. You may be the only visitor a person has, and the only opportunity to raise concerns about their care.
- Use your leadership skills – this is not about management skills, this is about challenging situations that may not appear to be in a person’s best interests and use it to promote human rights-based practice.
- Review your decisions – there will inevitably be situations where an urgent placement may need to be made (say for hospital discharge purposes). Review any temporary arrangements as soon as possible and don’t forget to refer to an independent mental capacity advocate if the person lacks capacity to make a decision about their arrangements and the arrangements are likely to be longer than eight weeks.
Further advice is available from a set of resources recently released by BASW, Homes not hospitals, designed primarily to support practitioners in navigating the complex decisions that sometimes present in trying to facilitate a move out of a hospital setting.
Ultimately, this quote from campaign group #SocialCareFuture sums it up “We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing things that matter to us.”
Jack Skinner is a team manager in a community learning disabilities team in Bradford
Claire Webster is a team manager for the Mental Capacity Act team in North Yorkshire