A Response to the BBC Panorama Programme – Abuse at Whorlton Hall Hospital
A Response to the BBC Panorama Programme – Abuse at Whorlton Hall Hospital & the Inquiry into the Detention of Young People with Learning Disabilities and/or Autism
Today (the 1st November 2019) Parliament’s Joint Committee on Human Rights published their findings on the inquiry into the detention of young people with learning disabilities and/or Autism. This is 6 months after the abuse uncovered by the BBC’s Panorama programme at Whorlton Hall Hospital. It highlights the long term impact on and suffering of young people with learning disabilities who are detained, the anguish their families face, as well as the lack of political focus and accountability to drive change. It sets out proposals for change that include; the development of a ‘Number 10 Unit’ with Cabinet level leadership; the recognition of families as human rights defenders; changes to the Mental Health Act; and changes to the process of inspections by the Care Quality Commission.
Sarah Brown (Clinical Psychologist) met with two parents who have fought hard for better care for their children within special schools, the community and hospital settings. Discussion focused on what they feel the failures at Whorlton Hall highlight, what they think of the Parliamentary report, and how we can support change. We have all written our comments in our own words and acknowledge how much of a responsibility it can feel to speak out about these issues on behalf of our own families and/or those that we work with.
Leanne is a Mum of two boys and lives in Wales – her youngest son is 9 years old and has learning difficulties and Autism. She is a Parent Governor at his special school. Adele is a Mum of four boys and lives in England – her second son is 18 years old; he has learning difficulties and Autism and has been in secure hospitals since he was 13 years old. Over this time, Adele has campaigned for local, community based care for him and other young people in similar situations.
Why does this keep happening?
We all agree that people with learning difficulties are still put in places ‘out of sight and out of mind’. We think this is due to complex reasons including psychological factors; society not being able to tolerate feelings of vulnerability or bear witness to trauma, so pretending it doesn’t exist, political factors; people with learning difficulties not being seen as ‘useful’ when what is useful becomes narrowly defined as contributing economically (otherwise you are a ‘burden’), and the underestimation of what it takes to provide good institutional care.
Judith Herman (2015) in her book ‘Trauma and Recovery’ says that “the ordinary response to atrocities is to banish them from consciousness” – they are too painful and unspeakable. In our experience, when we’ve tried to voice our concerns about services (and what we mean by that is the way our children have been treated by individuals and the organisations), there is an equally strong force that tries to silence us. Judith Herman describes this as the central dialectic of psychological trauma – “the conflict between the will to deny horrible events and the will to proclaim them aloud”.
Stephen Bubb, who was asked to carry out an independent review five years ago following the Winterbourne View scandal in 2011, said on the programme that the government had failed to implement his recommendations around providing community based, person-centered care for people with learning disabilities. We think that this lack of investment in community based care reflects a wider discourse around what it means to be a valued member of society. Adele and Leanne think that life should be more about love and living rather than what you can contribute economically.
What do we think needs to change?
We all think the report out today is a step in the right direction for people with learning disabilities and their families, particularly the focus on human rights and commitment to changes to the legislation.
Leanne and Adele: Fundamentally we want our children to be considered human – for people to treat them with the respect and dignity that all human beings deserve. For them to be acknowledged as capable of feeling emotions just like everyone does. In the programme we noticed how staff considered the residents to be ‘other’, how they talked over them as though they didn’t exist, they were ridiculed and talked about as though they were not human.
Leanne: We want to hear people’s voices. Article 12 of the UNRC Rights of the Child states that every child has the right to express their views, opinions and wishes in all matters affecting them. All staff working with people with learning disabilities must have training so that they know that indirect communication is communication. For example, when my son isn’t feeling safe, he shows it through his behaviours. He talks about things through his special interest and staff need to be ready and able to respond.
The strength and importance of the voice of a child/ adult with a learning disability should be a valued part of the work to improve services. Understanding that a “voice” can mean more than words; maybe an action, sign or talking though a character and play could be their way of communicating and having their “voice” heard. Also knowing how important their voices are, the truth and value of the words they speak and how important it is that we listen to that and allow them to know we value their thoughts and feelings. People spent a lot of time undervaluing my son’s understanding and how he was feeling – the difference it’s made to his wellbeing, to stop, listen and act on his words, has been huge.
Adele: We want people with learning disabilities and their families to have a safe haven when they are in crisis. When people are at crisis point services currently are not suitable for an adult or child with learning difficulties/Autism. As we’ve experienced, when a 136 suite is utilised, with its unfamiliar staff, it’s bright lights, loud unexpected noises such alarms, screams and shouting from those already detained, strange smells and sterile rooms, it causes much distress and discomfort. This often causes communication through behaviour that challenges, which can result in long unnecessary inpatient admissions, as well as the awful trauma that the person and their family will experience whilst subject to a 136 suite / cell. My son and I think that a safe haven is needed. A place where the whole family or carers can be part of helping to resolve / support through the crisis. Access to a multi-disciplinary team and practitioners who are experienced in learning difficulties and Autism as well as an understanding of how to use Positive Behaviour Support. Sensory areas, short break availability and therapy that includes holistic therapy for families. This is what my son, in his own words would call: ‘Mission Accomplished’.
Sarah: We want there to be much more of a focus on the importance of a fully integrated approach from services supporting disabled people and their families from childhood through adulthood and into old age. A society can only be truly measured by how well it includes and supports its most vulnerable citizens and this report shows that the UK is failing disabled people and those who support them.
An integrated approach would include, for example, equal access to play and toilet facilities for our most profoundly disabled children and taking into account the challenges of care workers providing intimate and personal care. In the Panorama programme we noticed comments about feelings of disgust and derogatory comments about residents’ bodies. We want staff teams to have support to consider their feelings about this and the challenges of providing care to young people or adults with adult bodies. With a colleague, Jude Liberman, Educational Psychologist, and a Specialist school in the South West, we developed an intimate care plan for students. We found that a whole school approach to intimate care legitimatised this as an area where the skills of teaching assistants and care workers are valued. It also led to students’ dignity and opportunities for them to develop their skills in independence and communication being considered as important as other areas of the curriculum.
Leanne: Whilst we welcome changes to the Mental Health Act, we want to see a stronger commitment to the exclusion or near exclusion of restraint for children, young people and adults with learning disabilities. In the Panorama programme it was clear that restraint was used as a form of power and control over vulnerable residents in a way that is likely to have been traumatic, and was clearly unnecessary, out of proportion and undignified. After finding out through a freedom of information subject access request that my son had been restrained in his previous Specialist school, I worked hard to contribute to a child-centred, collaborative and transparent culture in his new school. This has been supported by strong leadership and support from health services. They have shown that it is absolutely possible to create environments where restraint is not used at all. However, there are countries who have gone much further in ensuring expectations about restraint are clear. For example, in Victoria, Australia, legislation ensures that restraint is only possible as part of an agreed and reviewed Positive Behaviour Support (PBS) Plan. We want this to be the case in the UK.
Leanne: Positive Behaviour Support as a framework has been helpful for individuals, services and families. For myself and my son it has been really positive, and I felt it gave us useful insight. So much so that we shared the PBS plan with the wider family and got everyone on board including the GP. We are also mindful that for some people with Autism telling us it can be seen as dehumanising. Services and staff need to have a human rights and dignity based approach. Sarah thinks that integrating systemic and attachment based practice into PBS plans can ensure that young people’s relationships and communication, and their humanity, remains central.
Adele and Leanne: We want services to treat families like human beings and listen to them – to not blame them. We all think that families should have the right support at the right time, that is not dependent on having a diagnosis, and which is accessible and non-stigmatising from the time you have concerns.
Sarah: In Gwent we are taking a community psychology approach to the psychological wellbeing of children and young people. Ensuring that communities have what they need to nurture all children’s wellbeing, including children with learning disabilities is key. This involves considering how universal provision is inclusive and how we support families and young people far before things become so challenging that hospital is seen as the only option.
Our final hope
We want realistic investment in the services that make this vision possible. We want people to focus on people’s strengths and what is positive and yet remain willing to hear the negatives, think the unthinkable and respond effectively. Conversations like this are really important. We must keep talking.
With thanks to Victoria Jones, Systemic Psychotherapist
Contact: [email protected]
Sarah is the interim lead for the ACP community psychology network