We speak to families uncovering the trauma they face as a result of navigating the UK care system.
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00:00Hi, I'm Peter Baker, I'm a Senior Lecturer at the Tisart Centre at the University of
00:22Kent.
00:23My name's Vivian Cooper and I'm the parent of a young man with severe learning disabilities
00:28and behaviour described as challenging. And because of my experiences when he was little
00:32trying to get him the support that he needed, I set up a charity called the Challenging
00:36Behaviour Foundation.
00:38The charity provides support to families who have relatives with severe learning disabilities
00:43and behaviour that challenges. They worked with the University of Kent to collect information
00:49that will help families navigate a broken care system and ensure their voices are heard.
00:56We were commissioned by NHS England to investigate, to look at trauma in families who have a member
01:04with a learning disability and or autism. We sent out an online survey to families about
01:12the services they received, about levels of support. What was coming out was that the
01:18stresses that they were under were caused by the services that should be supporting
01:25them.
01:29My name's Sue. My eldest was born with a cyst in her brain which caused her to have significant
01:38learning disabilities, a physical disability. She's got autism and epilepsy and displays
01:47behaviours that challenge. She doesn't live here anymore, although she comes to visit
01:52us. She lives in supported living and it's really broadened her horizons.
01:59So I've had varying experiences with the system. My daughter was at a special school for all
02:07her school years, which on the whole worked well. I would say generally the specialist
02:13teams that we've worked with have been very good and very collaborative in their working.
02:18I think unfortunately some families have had very negative experiences and once you've
02:24had one negative experience it makes you more defensive when you go to another appointment
02:33or meet with another professional because you're worried that things aren't going to
02:38work out. Your defences come up, you're expecting a fight if you like and then obviously the
02:45professional doesn't feel that they're necessarily being listened to and so it develops and before
02:52you know it you've become a problem family.
02:59I'm Mary Busk and I'm a family carer. I have three children and one of them is disabled.
03:05Often on our journey we are blamed, we're considered to be difficult and troublesome.
03:12You're put on waiting lists for diagnoses that take years and years and years, but the
03:18issue is that really the clock doesn't stop for the child and the family. In our case
03:22we've had to go to the ombudsman many times, we've had to go to SEND tribunals, but all
03:28of that sort of accumulates in enormous distress for the family in taking time away from our
03:35other children and you become physically impacted by feeling dread and yet at the same time
03:43you've got to be articulate and maintain your composure and really know more than other
03:51people in the room and be a very strong advocate as well.
03:54My name's Luke Clements, I'm the Cerebral Professor of Law and Social Justice at the
03:59School of Law at Leeds University. What we need is change at the roots so that we redesign
04:07the system. We don't give people counselling and therapy for suffering the trauma, we stop
04:13creating that and I think that the Tizard work is so powerful in showing that it's the
04:20system that's causing this problem and the system has got to change.
04:24And one of the problems is that families aren't dealing with just one organisation.
04:29They're responding to children's social services, adult social services, education, housing,
04:36social security, disabled facilities and issues. They have these multiple systems, each a silos
04:43that they have to interact with and the cumulative impact of trying to work out the rules for
04:48each of those systems is traumatising.
04:51We recruited a group of family carers and we said to them, if you were producing an
04:55awareness raising resource for professionals, how would you do it? And it wasn't a set of
04:59PowerPoint slides. They were very strong about how they wanted to tell their story and we
05:05collaborated so that we had family carers' perspective, we had researchers' perspective,
05:10we had professionals' perspective, so we brought all of that in to say this is not, we're not
05:15looking at it from a silo, we're looking at it from a collective experience.
05:20By using the research findings and truly listening to one another, the group created
05:25a training workshop that many professionals are now being given across the UK.
05:30So my name is Linda Hume and I am the co-production and engagement lead at the Challenging Behaviour
05:36Foundation and part of that role has been involved in developing workshops. So the training
05:42is a four and a half hour, one day workshop which is built around four chapters of films
05:49that were developed by family members, so writing the script to presenting in it, writing
05:54the materials. So the four chapters that are part of the course really start out on a journey
05:59identifying what trauma is. Then they move into chapter two and that looks at why does
06:04this keep happening. I think some of it is a lack of awareness and not really understanding
06:07that what you do day to day in your job has such a massive impact in terms of how families
06:13might perceive what you do or the impact of some of the decisions you might make all
06:19be well intended, can sometimes be misguided and actually have quite traumatic impact in
06:25terms of family members. We then move into chapter three which then looks at just in
06:31terms of that ripple effect about it's not just the individual and perhaps the child
06:35they're supporting but the impact that has on other family members. And then chapter
06:39four really is about being much more optimistic about actually what can we do to change this.
06:44And one of the things that really resonates with me as a professional is people go away
06:49with a real sense of actually I can make a difference this afternoon, tomorrow, next
06:53week which is really I think one of the uniqueness and empowering things about the course. Really
06:58all you've got to do is to sort of entreat professionals to be kinder, to be more understanding.
07:06The work that Tiszad Centre has done is to show that these individual interactions can
07:12be traumatising but co-production is the answer and once you ask families to explain what
07:18they want, often it's very simple, it's very modest in terms of resources, it can often
07:24be very cost effective and I just don't know why the government doesn't actually do this.
07:30They talk the talk sometimes but they don't walk the walk.
07:34But the hopes are that by training professionals in a way where families have a say, it will
07:39create change in a fragmented system.
07:42My name is Sue North, I'm the Head of Children and Young People with Learning Disabilities,
07:47Autism and Special Educational Needs and Disability for NHS England. I think we recognise that
07:54for many individuals their family carers and their siblings are the people that will follow
08:00them through their life in a way that professionals often don't. We know that there are still
08:06some real challenges in the system. We're aware across different professions that there's
08:12a real growing interest and understanding in how to work in the best trauma informed
08:18way and we know that the training was so well received. I think we had comments back from
08:24several regions from individuals that had done the training saying it was the best training
08:28they'd ever done. It had really made them think about, reflect on their practice and
08:32that it was going to change the way in which they were interacting with families and individuals
08:37and I just think that's hugely important.
08:40Some of the experiences that families describe, there's a big range of experiences so that
08:46can range from trying to get support if your child for example suddenly begins self-injuring
08:54so hitting their head really hard on a wall or something like that. You know, I need some
08:58help with this and people are either saying someone else needs to help you or we haven't
09:04got support for that. As my family was told, we can't manage him locally, he needs to go
09:11to an out of area school so then your child who may be non-verbal, very young, has to
09:18go hundreds of miles away to a service where the people don't know him, as a family you're
09:27not able to provide a family life for them and then in those services a range of things
09:34can happen, things like restrictive practices, that means being held on the floor by a number
09:41of people, they might be given medication, strong anti-psychotic medication even though
09:47they have no diagnosis of psychosis to just try and keep them calm and sedate them to
09:54make them more compliant to fit in with the service.
09:57I have other children who don't have disabilities and the world that I live in with them is
10:03entirely different to the world that I live in with my disabled son so it is a world that
10:08requires you sadly from the earliest years to become a legal expert on education, on
10:16health, on commissioning, on benefits, on so many things. The research and other work
10:23that has been developed around family trauma has really given a sort of a voice and a name
10:29to something that I and other family carers have experienced for a very long time. There
10:35is hope, there is a future in terms of that academic work and the training.
10:41Even though it may take time, this research is the start to making a difference in the
10:46care system.
10:47I would love the Tisard Centre to do more work on this to get this message out. It's
10:54not just a message for professionals, it's also a message for families that they can
11:00articulate their experiences in terms of suffering effectively post-traumatic stress disorder
11:05caused by a system rather than many families blaming themselves.
11:10The collaboration of researchers, professionals and families is only at the beginning of its
11:16potential.
11:17We are continuing to get sort of interest from NHS England and local authorities about
11:24pushing this training forward but really this is only the start. We really do need to find
11:30out more about family experience and also to ask families about what they want in terms
11:36of services and how they think they should be involved. So yeah, this is just the start
11:41of a journey.