06/02/2017 11:08 GMT | Updated 07/02/2018 05:12 GMT

Specialist Mental Health Support Helped Us - But It Isn't Reaching Enough People

My son Archie was diagnosed with Duchenne Muscular Dystrophy in 2008, aged just three years old. It is a severe, degenerative, muscle-wasting condition, which will one day lead to him being unable to move by himself and will significantly shorten his life.

The condition is now starting to impact Archie's daily life, a situation that will only get worse.

For a long time I kept my head down about what we faced in the future. I was heavily involved in the campaign with Muscular Dystrophy UK to get a drug that would help Archie, Translarna, available on the NHS. It gave me something to put my drive into and it was fantastic. And from that campaign, people came to know me as being strong.


We won the campaign late last year, and the drug was funded by the NHS. But once it was over, I really struggled and I could feel depression come on. It put a huge strain on my marriage.

And that was just me. The real problems started when Archie Googled his condition. He has started to ask questions and I don't always know how to answer them - about what will happen in the future and when he will stop walking, for example. And when Archie got very down or upset about it, I would crumble and couldn't handle it.

Archie's condition is rare, but we are not the only ones facing this situation. A 2015 survey of 700 people with muscle-wasting conditions found that one in five patients experienced suicidal feelings during diagnosis, and half experienced depression.

It is easy when someone is newly diagnosed with urgent physical health needs, to overlook the mental health effects of their condition. But it's an extreme situation that requires specialist support - and there are nowhere near enough specialists working to help patients with rare conditions, like us, through their diagnosis and changing conditions.

This isn't just about the patient, either. You need a strong family to support someone in Archie's condition. But the family also needs help, to make sure we can be there for him, and can all work through our emotional issues in a healthy way.

We have been lucky enough to get to see a psychotherapist so we no longer have to face the difficult questions, and what they mean for us, alone.

I have learnt so much in a short time from having specialist support. I take on board what our psychotherapist said to me and just take things slowly, explaining things in simple terms to make it clear it's not his fault. We've had to repeat that a lot. She's at the other end of the phone if we need her. The funny thing is that we haven't even needed to do that. But it's as much about having the reassurance of the offer - that emotional safety net - as it is about having the service available.

And it isn't just about Archie, or me. The whole family meets with her, including my son Leyton, to talk about how he's coping too.

I feel much better about the situation knowing we have this support, it's really turned the family around and we feel more positive about how to handle difficult situations now.

I've even started working at a retirement village two days a week so that I am doing something for myself, all thanks to the psychotherapist.

She is one hundred percent part of the care we need to support Archie, both now and as his condition changes in the future.

But it took too long, far too long, for someone to ask us about how we were all coping. Too long to find out that this sort of support was out there, and too long to actually get to see someone.

I have met other families in our position who haven't even thought about finding this sort of support, but I can't imagine now what it would be like without her. We need everyone going through a life altering diagnosis to have access to support from a psychologist, ideally one with specialist knowledge and expertise in rare conditions.

It's made the world of difference to our lives - but we know there are thousands of more Archies and families out there need this support in place, now.

For more information or support on muscle-wasting conditions, call our free helpline on 0800 652 6352 (Mon-Fri, 8.30am-6pm) or email us at info@musculardystrophyuk.org.