Family Trauma: Navigating A Broken Care System

KentOnline / KMTV

We speak to families uncovering the trauma they face as a result of navigating the UK care system.

Transcript

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.

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