CQC are conducting a national review into the use of Do Not Resuscitate orders during Covid-19, with a focus on people with learning disabilities and autism and older people.
Following the Winterbourne View and Whorlton Hall scandals, the general public has become more aware of the trauma that people with learning disabilities and/or autism can undergo. However, what is not widely publicised or understood is the trauma experienced by the individual and their family in their daily lives, caused by interaction with the systems of education, health and social care. These systems are meant to support families to care for their loved one with a learning disability, yet we know that this is not always the case.
“Often, community-based services have not been sufficiently well-developed and well-organised to serve them. Placements break down as people whose behaviour presents a challenge can no longer be supported. For those who have been living with their families, there are insufficient local placements prepared to take them. For people already in supported accommodation or residential care, the placement is unable to cope. For some individuals, this means they are required to move from one place to another over and over again, causing distress to them and their families.”
(Mansell 2: Services for people with learning disability and challenging behaviour or mental health needs (2007))
NHS England commissioned a project to help scope the availability of trauma support for family carers of children and adults with learning disabilities and/or autism; what families want, and professional knowledge and awareness.
The Challenging Behaviour Foundation, Respond, Three Cs, and the Tizard Centre came together to work on a joint approach to the three strands of work: The first strand considers what is available to families and what they need.
This was carried out by the Challenging Behaviour Foundation and the Tizard Centre through a family carer survey and literature review. The second strand delivered sessions of trauma support to families and was conducted by Respond. The third strand looked at professionals’ experience of family carer trauma support and was conducted by Respond supported by the Tizard centre via interviews with professionals. All three strands will be brought together in a final overarching report.
The CBF role in this project was mainly focussed on providing family carer input and experiences to the whole project, including the evidence base for need for trauma based support for families and what they would find helpful.
Focus of this report
This report for Strand One of the project has been co-produced with a family carer advisory group. The CBF recruited the family carer advisory group to co-produce an online survey to:
- Provide the evidence base of need for trauma-based support for families
- Scope out what’s available and what works, including evidence-based approaches. This report presents the results of the online survey including family carer comments.
Introduction from the Family Carer Advisory Group
“We are families who have been traumatised by the continual fights with the very services who are supposed to help us make life easier for our disabled family members. Over the years, we keep coming across other families with disabled children who have suffered in the same way as we have and realised that we were not unique in having to constantly fight the system for even the most basic help for looking after our disabled relative.
It begins from the point when hopes and dreams of a life bringing up a child are shattered, often by a professional handing out a diagnosis, and continues forever. We, and our children are transformed instantly from being human beings into something lower, because of the way we are treated by the state, by professionals and by the general public. Our main problem is not our relative, but the response from others, especially those who have the power to help but seem unwilling to do so.
We feel that change is long overdue, that the present system cannot continue to hurt the most vulnerable in our society, because it is inhumane. Something needs and must be done. We hope that this document will provide evidence that the problem is widespread and that there is a way forward. We hope that people in the various care professions take the time to listen and, most importantly, to act to bring about major change. Perhaps then, we can lead ordinary lives, like everyone else, instead of ones full of trauma.”
To read the full report see here:
Support from the CBF
Family Support Service
If you have been affected by any of the issues raised in this statement, you can call the Family Support Service on 0300 666 0126
Or email us at firstname.lastname@example.org
We are open at the following times:
Monday – Thursday: 9am – 5pm
Friday: 9am – 3pm
We offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.
Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority.
Professionals are also welcome to contact the CBF.
Resources on our website
Please consult the following information section on our website, for information sheets and signposting:
We are extremely concerned by continued reports of individuals with Covid-19 receiving Do Not Resuscitate notices solely due to their learning disability.