I told the physio I was crying so much because David Bowie died. It was mostly true but there were definitely tears of frustration in there, the same ones I’ve been sobbing out for years at the lack of help.

When I was diagnosed with Ehlers-Danlos Syndrome in the summer of 2014, the letter my consultant from UCH sent to my GP included several recommendations for referrals to help with management of this condition. Finally, I thought, I would get some help. 18 months later, I feel like I might as well have asked a brick wall.

In that letter I was given a strong recommendation to see a hand and foot specialist. My GP tells me they can’t refer anyone, even diabetics to podiatry. As for hand therapy, my physiotherapist says there is a specialist within the trust I’m having physio under but they only accept referrals from consultants. I no longer have my EDS consultant because cuts to NHS funding mean she can now only diagnose patients then discharge them back to the care of their GP. I’ve asked for a general rheumatology referral and been refused because “why would [I] need it?”. I need it because having a specialist is the only way to get help, apparently, and that should be reason enough. (Other recommended referrals were GI and Autonomic clinic, I’m hoping to get to the Autonomic clinic through my cardiologist who I already had before diagnosis.)

 

Hydrotherapy or massage therapy won’t happen in this trust. How can I get them? “Move”, said my physio, sardonically. I’ve warmed to him slightly. He replaced my lovely bright therapist a few months ago and his vaguely dour approach was quite off-putting. He keeps demanding of me what I WANT from physio and “not to get worse” isn’t a good enough answer. However, he says he has a plan and I’m inclined to trust him. He seems as frustrated at the limitations the NHS has put on treatment of chronic conditions as I am.

It’s exhausting to keep fighting the same battles. It feels like I’m going in ever-decreasing circles, chasing my tail, lost in a maze. I know I’m not the only one in this position because of cuts to health services, and it seems incredible that cuts affecting so many people could have been made.

 

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