Photo: reif / Fotolia
By Jack Skinner and Claire Webster
Ten years ago, BBC Panorama revealed the horrific mistreatment that Winterbourne View Hospital staff had inflicted on people with learning disabilities who were about to undergo examination, treatment and rehabilitation. A police investigation resulted in 11 criminal convictions, a national outcry, and a formal government response to the grave neglect highlighted.
A number of research found that:
- More than half of the people there were more than 40 miles from where their families lived.
- Over a period of 15 months, there were over 500 reports of reluctance.
- For patients at Winterbourne, informal hospitalizations have been inappropriately converted into formal detention under the Mental Health Act.
In 2012, the government launched the Transforming Care program, which aimed to significantly reduce the number of people with learning disabilities or autism in hospitals and assessment and treatment units (ATUs) and to ensure that they themselves received quality care and support receive congregations instead.
Have we made any progress?
Ten years later, have we made progress in improving support for people with learning disabilities, reducing the risk of abuse, and ultimately moving away from large institutionalized institutions as the priority support mechanism?
Tragically, there have been more recent cases of abuse by people with learning disabilities or autism in settings similar to Winterbourne View, such as Yew Trees (2020) and Whorlton Hall (2019). NHS figures say over 2,000 people are still waiting to be relocated. There also remains the question of a general dependency on institutionalized care that is far removed from family and supportive networks.
Hearing some successful extracts from the hospital like Beth’s shows the difference that can be made day and night when people work together to achieve a common goal.
Key role of the social worker
The key to success often lies with the social worker
Social work works great when we build relationships with people. We love this quote from Professor Sara Ryan, a disability research academic who emerged as a leading campaigner for the rights of people with learning disabilities after her son Connor died totally preventable in a hospital in 2013. Nurses and students need to know about our families knowledge? The answer is: We are all human “ (Love, Learning Disabilities, and Bags of Brilliance, 2020).
With a human rights focus, social work can ensure that home, family, happiness and love are central choices in a person’s life.
Challenges in practice
However, in our experience, this can be very difficult. When people are placed in hospitals far from the local authority, it is more difficult to establish that basic relationship with the person and learn firsthand how best to build the right support around them to help them live their lives.
When the protective court is involved, proceedings can sometimes take months and years instead of days and weeks. Meanwhile, the person is still in a place they don’t call home.
Working with people in hospitals always has an impact on resources, and since there is often no discharge date, this can often be prolonged as the person is considered “safe”.
When the risks are perceived as high and the multidisciplinary team communicates the severity of what could happen if a layoff occurs, it needs a strong-willed social worker who is committed to reducing restrictive practices.
Expert support is sometimes difficult to come by. A good support agency can make the difference in whether a community-based support plan works flawlessly or if it fails, for example if the agency pulls out on short notice.
Maintain human rights orientation
During the academic social work path, you will become familiar with the idea of the profession as a vehicle for social change and the need to critically analyze and reflect on your practical experience.
A strong team – one that drives innovation and promotes social justice – can nurture the ethos needed to improve support for people with learning disabilities or autism.
In some teams, you will quickly become familiar with a transactional approach: receiving a referral, visiting, full assessment, full support plan, setting up a service to assist someone, scheduling a review appointment.
To maintain a human rights focus, you need almost to memorize the sequence it takes to “complete” a process but have it in the background while in the foreground making sure you listen, watch and trust and work to make sure you The person is at the center and at the forefront of the process.
The challenge that arises from this is finding the right support at the time someone needs it, possibly at the most difficult point in their life. Balancing the desires and feelings of the individual and their families with the resources available can be challenging, but the skill really resides in a social worker’s ability to work through these with the person and find solutions together.
Inequalities in health and employment
People with learning disabilities or autism continue to experience inequalities in access to health care and employment, two big factors that affect their socio-economic experience and result in much lower life expectancies than the general population.
It is a common occurrence that regular appointments are not followed up, either because things were not deemed urgent or because it was in the person’s “best interests” not to take further medical action.
The pandemic has made this further clear with the blanket applications from DNACPR (no attempts at cardiopulmonary resuscitation) and a high rate of Covid-related deaths due to a delay in prioritizing vaccinations. Combine this with minimal supervision due to visiting restrictions and you will find a perfect storm with increased risk of abuse and deterioration, both physical and emotional.
While we’ve made some progress in providing community support for people with learning disabilities and autism, we haven’t gone far enough to ensure that a person has the opportunity to live in their own home with the care and support that it does enables them to lead a prosperous life.
Our top tips based on our experience are:
- Don’t be afraid of the law – The laws governing these situations are primarily there to protect and empower people, but making sure you are up to date with legislation and guidance and are acting in the spirit of the law is so important to making sure that people have the intended support and control over decisions made.
- Strong representation of interests – It can be imperative to have great advocates. Build and maintain relationships with lawyers. Make her your critical friend.
- Cooperation with health colleagues – Have good conversations about rights and risk empowerment. These honest conversations are absolutely necessary in order to achieve what the person wants. There is no one size fits all. Labels are for clothes, not people
- Professional curiosity – always look beyond the task at hand. You may be the only visitor a person has and the only way to raise concerns about their care.
- Use your leadership skills – This is not about management skills, but about challenging situations that do not seem in the best interests of a person and using them to promote human rights-based practice.
- Review your decisions – There will inevitably be situations where urgent placement may be required (e.g. hospital discharge). Review all temporary arrangements ASAP and don’t forget to contact an independent intellectual capacity attorney if the person is unable to make a decision about their arrangements and the arrangements are likely to last longer than eight weeks .
Additional advice can be found in a number of resources recently published by BASW, Homes not hospitals, which are primarily intended to assist doctors in dealing with complex decisions that are sometimes made when trying to make a move out of a hospital easier. occur.
Ultimately, this quote from the #SocialCareFuture campaign group sums it up: “We all want to live in the place where we call our home, with the people and things we love, in communities where we take care of each other and do things that are important to us. ”
Jack Skinner is a team manager on a community learning disability team in Bradford
Claire Webster is a team manager for the Mental Capacity Act team in North Yorkshire