An outsider's view of the powerful impact of parent carer participation

Wednesday December 5, 2018

Janet joined us at the 2018 National Event for parent carer forums. This year's event marks 10 years of parent carer participation. In this blog, Janet shares what the 10 years mean to her - as someone who isn't a parent of a disabled child.

The 2018 National Conference of Parent Carer Forums shared the date with America's Thanksgiving Day. So it got me thinking about what was I thankful for. 

As I thought about this while driving to the conference, my first reaction was to give thanks for my own health, and that of my children, who are fortunate not to have any disabilities. But as I drove home after an inspirational day - having gained an outsider's view of the world of SEND - I realised I was wrong.

Had I asked the conference-goers what they were grateful for, I think most parents and carers would have said a big thank you for their children with special educational needs and disabilities, who have brightened the lives of their families. Their love, devotion and pride in them certainly shone bright.

Overcoming challenges

Having spent a day hearing about the challenges facing these families, it made me realise that what I should actually be thankful for is  that my life has been comparatively easy. I haven't had to fight for a fair education for my kids, or for the best healthcare treatments for their needs. I haven't had to attend multiple appointments with multiple agencies; sacrifice my career  or worry too much about what happens to my children when they leave education. Nor have I had to fret over what becomes of them when I'm old or no longer here.

These were just some of the real and pressing issues shared by Forum members.  It made me wonder how on earth do you begin to cope with caring for a child or young person with a life limiting disability?  How do you manage in the school holidays? What happens if your youngster has been forced out, or excluded from school? Where do you find the patience and tolerance to deal with people who don't understand, or the emotional resilience required to be a parent or carer? Finally, how do you manage the complexities of what it means to raise a child or young person with SEND and navigate between the various services they require?

Concerns of parents and carers

The scale of the 'mountain' parents and carers must conquer was revealed during question time. Professionals from across health and education bravely answered a stream of questions from the audience. Common concerns were SEND funding; the accountability of schools, particularly around exclusions; tribunals; regional  inconsistencies in joint working and a multiplicity of Clinical Commissioning Groups; culture change; delays in diagnosing ASD; short-breaks provision,  and Local Authority inspections.

Ten years of transformation

It's ten years since the National Network of Parent Carer Forums (NNPCF) gained funding and started its explosive growth,  supported all the way by Contact, which co-hosted the conference.

In an opening address by  sponsor Seashell Trust, CEO Jolanta McCall  looked back at the incredible ten year journey of the Forums and the future challenges of "putting good legislation into practice".

93,412 members and growing

Today, the NNPCF has an active and dynamic membership that's fast approaching 100,000 national members. The 2014 Children and Families Act is transforming SEND provision and has embedded parent carer forums in legislation. Ten years of government funding for the NNPCF has made a huge difference. Thankfully, the Department for Education has confirmed its continued financial support.

Partnership with government

The respect across government  for the NNPCF and Contact is evidenced by the fact that both the Department for Education and NHS England were conference partners.

Recognising the importance of this strategic partnership, two ministers spoke at the conference. Nadhim Zahawi MP, Parliamentary Under Secretary of State for Children and Families delivered the keynote speech, in which he promised that the government will "continue to listen".  Caroline Dineage MP, Minister of State for Care addressed the audience via video link. She was full of praise for the Forums and acknowledged how vital "expert user engagement" is in commissioning services.

There are many examples of joint working with government departments and professionals across health, education and social care. This includes the recent role of Forums in the joint Ofsted and CQC SEND inspections. Much more needs to be done, however, to build these alliances on a national, regional and local level. In particular, progress on co-production is slow in some regions, with a few Forums reporting difficulties in engaging with Clinical Commissioning Groups.

WOW! What a difference

The fantastic impact of the individual forums in improving the lives children and young people with SEND was celebrated  by sharing some WOW moments of outstanding best practice.  The conference WOW board, where these initiatives were captured on post it notes, provided a visual demonstration of  the amazing results achieved by forum members. These WOW initiatives are being collated by the Forum and Contact, who will share them with government and publish them on their websites.

Amanda Batten, CEO of Contact, summed up the amazing impact of participation by quoting a parent carer from Sutton Parents' Forum, who said: "Something quite magical happens when people sit down together, talk, listen and work things out. Barriers come down, fear and ignorance flies out the window, and respect, understanding and goodwill takes its place.

That magic was certainly alive and kicking in the conference hall.

Reasons to be truly thankful

So just how did families cope before they had this valuable and well informed support network? It must have been a confusing and lonely experience for parents and carers, who had pockets of support from the early parent carer forum pioneers, but not on the scale available today.

Although the job of raising a child with SEND still remains exceptionally difficult, the task has been made much easier through the shared fellowship and expertise within the NNPCCF and the support of its partners. That is definitely something to be hugely grateful for  - not just on Thanksgiving Day, but every day!

I'd like to add a note of personal thanks for being allowed a privileged peek into the lives of parents and carers of children and young people with SEND. You have my deep respect for fighting the good fight with such good humour, resilience and professionalism.

Janet Kilpatrick