Give carers of kids with challenges good advocacy

Don't just offer mere sympathy to parents with challenging children. Picture: Phil Wilkinson

Don't just offer mere sympathy to parents with challenging children. Picture: Phil Wilkinson

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Straight-talking solutions are best, writes Sophie Pilgrim

As defined by the Scottish Independence Advocacy Alliance, independent advocacy is a way to help people have a stronger voice and to have as much control as possible over their own lives. Advocacy is an important means of ensuring that statutory provision is equitable and accessible to those who, for whatever reason, have more difficulty in being heard.

At Kindred, we provide an advocacy service for families of children with disabilities and longterm conditions that is hugely in demand.

We have seen a year-on-year increase in the numbers of families that turn to us for support. For the first time in 22 years we have had to temporarily close all our projects to new enquiries, to catch our breath. This week, I looked out the numbers for an application to the Big Lottery Fund. Since 2011, the number of families we have supported per year has almost doubled, rising from 492 to 909.

It is daunting to experience an increase in complexity of families using our service. We now support a high proportion of families of children with life-limiting conditions, many families on the paediatric intensive care unit at Sick Kids, families with the most troubling histories of abuse and neglect, parents with learning disabilities, and, more recently, families requiring food banks and emergency grants.

Almost half of the families whom we support access Child and Adolescent Mental Health (CAMHS) and we have a curious insight into the workings of the CAMHS teams to the point where I sometimes feel vaguely voyeuristic.

We can see, for example, the desperate plight of families of children sent to England because there is no inpatient care for children with autism and learning disability in Scotland, and the way in which this dire situation impacts on community CAMHS teams.

For children and young people, diagnosis of conditions such as Autism Spectrum Disorder often come about as a result of challenging behaviour, including self-harm. Usually parents have had to endure ill-informed judgements on their parenting while waiting for a diagnosis, especially when there are long waiting lists for CAMHS services.

This is one reason that parents often respond with relief, or at least mixed feelings, if they do receive a diagnosis.

As advocates, we can support parents to believe in their own knowledge of their child.

I recently took a call from a parent who told me, with tears and angry outbursts, about her 17 year old son’s inadequate care package. I was feeling over-stretched myself, so I fired off a series of quick, impatient questions, interrupted her answers and, showing no sympathy, moved on to what we could do to address her situation. After 20 minutes she shouted at me, “You really get this don’t you? In 17 years I’ve never spoken to anyone who has got it.”

But of course I got it. She had just described exactly the same series of events that I had experienced with my own son.

And I knew from my own experiences that she did not want my sympathy.

She wanted advocacy – someone to explain, support, sort evidence, and represent – so that she could make her case and get back to running her successful business and carry on being a carer of a young man with extremely challenging needs.

Why is advocacy so little understood unless you’ve been on the receiving end? Even after six years in post I have struggled to answer that question. The reality is that not enough people know enough about it and how to access it.

It is nice to have our staff described as “guardian angels”. But probably the reality is something more down to earth. Most of our staff at Kindred are parents of children with disabilities (12 of our 16 staff). Between us there is not a lot that we haven’t experienced ourselves, from CAMHS to hospital care, from specialist schooling, equipment and home adaptations, to the vagaries of diagnosis, from our low-birth weight babies to our six-foot tall adult children. 

Parents of children with disabilities often know no one who shares their experience of caring. Because of this they experience a particular kind of isolation and find themselves struggling to explain themselves over and over again. 

There is a clear need for independent advocacy services to be more widely available and above all, a statutory right for those who need it.

Young people with mental health issues and their families are amongst the most vulnerable in our society – let’s make sure we do all that we can to give them the help and support that they need.

• Sophie Pilgrim is director of kindred advocacy and a member of the Scottish Children’s Services Coalition

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