Campaigning for the right to speak and be heard

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Steve Hermon gives an account of how he began his journey as a campaigner for speech and language therapies to be given greater support.

May 2019 was a month that sticks in my memory for a few reasons. Wolves (the football team I support) qualified for Europe for the first time in forty years, our son Eddie celebrated his 4th birthday and an event was organised that would help me more than the organisers will ever know.

I was on the train to work at BBC Radio WM in Birmingham and saw loads of Mums and children carrying posters with various slogans on. I realised they were attending a SEND Crisis March I’d read about. It was being held to raise awareness of the issues facing parents and their children with special needs and disabilities.

Steve and Eddie.

I briefly walked through Victoria Square to see the event being set up and carried on into work to read the news. A short time later, one of our reporters went to cover the demonstration for us. She sent back an interview with one of the organisers, Kate Taylor. Listening to it provided a huge turning point in my own journey as a parent of a child with SEND. On that day she said:

“When you have a child with special needs and disabilities, there’s an element of grieving that takes place, so when you first get your diagnosis or you’re first aware of it, you have to let go of the child you spent your life dreaming you were going to have and you have a whole new journey and that journey is equally beautiful and equally amazing but it’s different and there is a period of adjustment and that’s very hard and often very, very isolating.”

I played those words on the radio in my bulletin but after the red ‘on air’ light went off, the words sank in. I sat there and I cried… because she was right. I dreamt of having a son, who I would take to Molineux to watch Wolves. I’d watch him play for a Sunday league team and he’d get married, have kids and carry on the Hermon name in our family tree. The words were tough to listen to but they were what I needed to hear at that time. I knew he was ‘different’ but I had not fully accepted that we had a child with special needs and I was struggling with the reality that our boy wasn’t speaking when other children were.

That’s despite our SEND journey being well underway by this point. We were in the middle of the EHCP process and had visited special schools that Eddie might attend later that year. My wife Kate is to thank for that. She stayed focused, booking the visits and constantly spoke with Council officers to make sure the paperwork went through. Ultimately, she accepted the situation a lot quicker than I did and crucially spoke to her friends about it. I didn’t speak to mine. I didn’t think they’d find it interesting during a chat over a pint. At home, I also didn’t want to let on to Kate that I was struggling. Instead I did the worst thing and bottled up my feelings. I guess I isolated myself and hadn’t gone through that ‘grieving process’ Kate Taylor referenced.

We don’t have a diagnosis as of writing but Eddie’s primary need is speech and language. He wasn’t hitting those milestones you expect, so we referred him before his 2nd birthday. After a hearing test (which we knew he’d pass because he can hear a packet of crisps open from a mile away), he was eventually referred to the NHS speech and language therapy (SaLT) service in October 2017. It was another 7 months before Eddie attended a session with a therapist but just before we received a letter telling us that due to a lack of resources and demand, his 3 one hour blocks of therapy were being reduced to one 30 minute session.

Raising awareness.

This was the first time I contacted my local MP, Mike Wood because I felt it simply wasn’t good enough. That set me on the road of finding out why our local service was like that. I’ve since spent countless hours of my spare time researching funding levels for SaLT across the country. I’ve met with council staff, politicians, other parents, and the Royal College of Speech and Language Therapists. They’ve been extremely supportive, especially Peter Just and Padraigin O’Flynn. The RCSLT also introduced me to Gillian Rudd, senior lecturer in SaLT at Birmingham City University, as well as a fellow parent, Dave Harford. Both have a passion for the same issue and that led us to co-signing a petition on the Parliament website (https://petition.parliament.uk/petitions/587872) calling for improved support for people with communication and swallowing needs earlier this year. Like many things, it’s been exacerbated by the coronavirus pandemic.

We were delighted when the petition reached 10,000 signatures in less than a month. That meant we received a response from Government, which is great but frankly it won’t lead to change. I’ve received statements from ministers in the past after writing letters and even heard a response in the Commons last year when Mike Wood raised the issue on my behalf. It was appreciated but the response felt hollow.

It’s ironic in a way but words from ministers won’t help my son with his vocabulary. Fairer funding and action will. It’s an overused term but SaLT via the NHS suffers from a postcode lottery. Myself and Dave Harford often say, it’s not right that geographically we live 23 miles apart and yet the quality of service his son had at the vital Early Years stage compared to what Eddie received is like being on another planet. His son attended weekly sessions a short distance away, while our lad was restricted to half an hour! That can’t be right can it?

100,000 signatures on the petition could trigger a Parliamentary debate but that’s only the start. I’ll never give up until things truly change for our son and thousands more children growing up without a voice. They don’t have one, so we must use ours for them. We also need to speak up for the hard working, dedicated therapists in the industry. They’re doing the best they can and my frustrations aren’t directed at them. I want to work with them, so they get the resources they need to meet demand.

Kate Taylor from that SEND Crisis march was right about another thing though. As a family, we’re now on an ‘equally beautiful and amazing’ journey. We’re lucky too. Eddie is a happy boy full of smiles. He loves going to school and responds really well to Makaton (which we learnt by watching Mr Tumble on CBeebies and YouTube videos) and he enjoys his sessions with our brilliant private therapist, Kate Sheffield. We turned to her last year to top up the support he receives in school. All of this has helped Eddie begin to find his voice in spite of the barriers we’ve faced. A conversation with my boy is the ultimate goal but he can now say a number of words and every time he says a new one, it’s the BEST feeling in the world. Not even witnessing a last-minute winner for Wolves can top that.

Steve Hermon
Author: Steve Hermon

Steve Hermon
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Steve is a Dad of 2 children. He has a passion for raising awareness of SEND issues, particularly funding for speech and language therapy. He also works for BBC Radio WM as a Broadcast Journalist, covering News & Sport in the West Midlands.
T: @SteveHermon
I: @stevehermon

 

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