I very rarely ask for a call to arms but I am asking today. If you do one thing today then please tweet @AnnJamesNHS , @Derriford_Hosp , @BBCSpotlight, @itvwestcountry. Why? Well in its infinite wisdom Derriford Hospital that treats the majority of PoTS sufferers and Autonomic nervous system disorders in Devon and Cornwall ( and some even further a field) has decided to cease funding the PoTS clinic and retire an outstanding Doctor called Dr Jamie Fulton.
There is a board meeting at the hospital on Friday 27th March and you can submit a question to @Rich_Crompton via twitter by 12pm today.
Dr Jamie Fulton is amazing and is loved by all his patients. He cares, he listens, he spends time with you and you never feel rushed out the door. He thinks of of out of the box treatments for his patients. Without his help I wouldn't have the treatment regime that I am on now. I am not better but life is liveable. I am not constantly fainting without warning, my blood pressure is higher than 70/40.
Dr Fulton has changed people's lives due to his clinic. People that for years have been told that their condition is all in their head or that they have FII - fictitious induced illness / Somatisation disorder. He treats the whole patient rather than just the symptoms.
Without him I wouldn't have had my aorta scanned, something that is supposed to be done every 3 years ( due to me having EDS) yet in my neck of the wood no one ever bothered to do it despite my repeated requests. He tried all the medications he could to help me and never once gave up when I reacted badly to Midodrine and Ivabradine. I now take pyridostigmine and sudafed ( also known as pseudoephedrine ). It is these two drugs along with salt tablets that have made the biggest difference to me. Yes I am not better or fully functioning but I am better than I was and that is huge to me.
The reasoning behind the closing of the clinic is saving money, under the guise of letting gp's (who are already shockingly overworked and in short supply) manage long term health conditions. The problem is many of us with PoTS won't get better with simple lifestyle changes of upping fluids and salt. If that's all that was needed PoTS clinics wouldn't exist. Many of us need medications that in the UK have to be prescribed initially by a hospital consultant. They then get prescribed by the gp ( primary care ) but on the understanding both the consultant and the gp share the risk if something was to go wrong. Many gp's without a consultants input will just refuse to prescribe treatment. With no PoTS consultant for the majority of Devon and Cornwall some of these patients whose PoTS has been well controlled for years will suddenly find their gp practices will no longer prescribe the medications that have kept them functioning.
There is no PoTS clinic at my local hospital as the doctor that ran it retired last year and no one wants to take this area on. As one doctor told me "No one in their right mind would apply for a devalued, unsupported post as a means of sacrificing their career and ambition" They also let me know that the trust that they worked for had "systematically, eroded the hospitals general medicine and autonomic clinic for quite sometime. They had no forward plan, no succession planning for personnel in place" they were basically letting it die a death banking on the fact the PoTS patients and others that it serves would let it go quietly as we would be too sick to fight.
Well Ann James I am here to tell you that you have vastly underestimated the amount of noise we are going to make. It wont be one or two tweets but enough to ensure that we are heard. Enough to show what a stupidly short sighted decision you have made when so many people who have had Covid go on to develop long Covid and you will not have the services or the expertise to be able to help these people. Shame on you!
So if you can help by tweeting, writing to Ann James at Derriford hospital, contacting the press, writing to your MP then please do it. One Voice isn't enough we need lots of loud voices that are refusing to go away until this ridiculous decision is reversed.
You can find out who your MP is here
Please share this blog post far and wide and get our voices heard!