This is a copy of an email that I have just sent to the CFS team at Southend University Hospital. I saw my GP and was referred to the clinic as my symptoms have become so bad that I have been housebound for the last year and a half. The referral was refused!
I am sending this email about a refusal of referral because not only does it not make sense, it is also unfair and ridiculous!
I was diagnosed with ME or CFS as it is now known in 1997 by Dr Elizabeth Dowsett at Billericay Hospital, I still have the original paperwork but I also asked for a copy to be put into my notes.
This diagnosis was after I was admitted to Cardiac care and then transported to the London Chest Hospital, I was later readmitted to Southend Hospital with a chest infection but like many people with ME, I was later dismissed as being fake despite developing ECG changes with an inverted T wave, not sure how you fake that?
The fatigue was both mentally and physically very very difficult but through pacing and other techniques, I managed to return back to work in 2008. However sods law popped its head up and I had an accident at work shortly after a difficult surgery on my left knee and had to start using a wheelchair and then after a total knee replacement I was left in even more pain.
This flared up the ME/CFS as everything was more difficult and also the pain takes a lot of energy and so after having been basically housebound for over a year, my wife and I decided that I should ask for a referral to the CFS clinic at Southend Hospital.
The GP agreed to the referral but I was told that I needed blood tests before I could be referred, I was told that the blood test had to be at Southend Hospital as one test had to be taken straight to be tested or something like that. I was then referred to the CFS clinic.
I can’t describe what it is like to feel like this every day, it destroys you inside and I struggle so much to cope and so when I am told that a service that is there to help me has refused my referral, well this 6’ 4” man burst into tears, why? Well it really feels like no one gives a damn. I have no care plan, doctors just don’t seem willing to help in any way and honestly, I am scared of how quick my health is declining.
So I spoke to the GP secretary today, she said that the CFS clinic at Southend Hospital has said that I should be treated by the GP, however if my symptoms get worse I should ask for a referral…to me that is unbelievably a load of nonsense, why do they think I asked for the referral in the first place? I explained to the GP secretary that I saw the GP because my symptoms are worse and so she spoke once again to the secretary at the CFS clinic.
The outcome was that if my symptoms have become worse, they have said I should see my GP to get a referral!
I sometimes feel like I am on a hidden camera show, because stuff like this is so unbelievable that it has to be some form of sick joke?
I rarely go out, I struggle to do anything because I overheat, my brain gets all foggy and I struggle to think straight and the fatigue beats me. I went to the GP, I went to the hospital for blood tests and now I am expected to do it all over again?
I am sorry but no!
Can anyone else see how ridiculous and cruel this is?
So I have to write an email to explain the situation and that means that I then feel like I can’t see the CFS team because I am only doing so because I have complained about them!
I have added a CC of this email to Dr Charles Shepherd, I initially emailed him about the refusal of the referral and he asked to be included in any communication. I didn’t initially contact anyone because I hoped it would be resolved, but of course it isn’t. I have also included the PALS team at Southend Hospital and my GP surgery. I am also publishing my email as a blog post and it will be shared via social media.
This is no way to treat people who are battling through everyday, we have already been dealt an unfair hand by being unwell and the slightest bump in the road can really cause us a lot of upset. It causes more upset than it should really and that is because we are already coping with so much that it doesn’t take very much for it to be an upsetting event.
I think that there needs to be a rethink in the way these referrals are dealt with, we are human beings who deserve to be treated as such.