GCA and Myocarditis

[Karendoz205]

I've had GCA since 2016. I have had 4 heart attacks since then one this year. I've been to guys and st Thomas in London twice now. My heart is now damaged and it's not working properly. I've had an attack in April just got sent home when it passed. Live in Eastbourne because of coivid I keep being told I will be seen but the departments aren't even open. I'm now having problems with osteoarthritis and narrowing spinal column have urgent referral from Dr and nothing.

[PMRpro Ambassador]

But the gubmint insists things are working!

[Karendoz205 in reply to PMRpro]

No there not all open. My Gp is so frustrated. The only pain killers I have are co-codamol. My Dr has upped them up to.the maximum but they don't touch the pain. I'm contacting my Gp this week as the pain is unbearable and what makes it worse is not sleeping. My husband has been told by his practice they can't afford to send him for an X-ray so just turn up at A&E. My Gp said that Rheumatology should be opening soon but now there's a second wave he doesn't know.

[PMRpro Ambassador in reply to Karendoz205]

I think I might go to the CCG over your husband's practice. That is NOT acceptable.

[Karendoz205 in reply to PMRpro]

Who are they. I will complain myself to them if they are good. I had problems with rheumatology with my GCA the main consultant at Eastbourne Hospital. I had never seen him before. I was being treated for a good 3 years. Then saw him. He was rude arrogant couldn't look me or my husband in the eye. Said I was too young I was 54 at the time. Rubbished every medication I had taken which they had prescribed. Rubbished the surgeon who I saw twice who said I had it. They had left it 3 months before I had got an appointment with rheumatology. The opthampology department put me on 50mg straight away do by the time I was seen they couldn't do a biopsy. The surgeon said to me what we're the symptoms etc. He said did the pain go really quickly all of it and I said yes. That's GCA nothing but steroids have that affect on it. I reported the consultant to the hospital department. My life has been made hell there since. I even saw a neurologist. They did tests and they said it's GCA. Unbelievable.

[PMRpro Ambassador in reply to Karendoz205]

The Clinical Commisioning Group responsible for your primary care provision,

england.nhs.uk/ccgs/

At the hospital, complaining to the department or PALS gets you nowhere - write to the legal/complaints department. Including the fact you went via the department and are being victimised as a result.

nhs.uk/using-the-nhs/about-...

When my daughter recently made a complaint about poor and delayed management of what was supposed to be an urgent problem, she had a date for surgery within a few weeks. I would never have suggested this in the past but things have become silly.

[Karendoz205 in reply to PMRpro]

Thank you so very much.

[123-go]

Hello lovely lady and gorgeous dog. I think you should push your GP to expedite a hospital appointment. We are told that we should contact our GPsif we are sick and concerned and in your case this is absolutely the right thing to do even if you feel you are being a nuisance which you're absolutely not! Hospitals are open! Your GP should expedite an appointment for you. It's clear that you're feeling extremely stressed and this isn't good for you. Don't let him/her fob you off. As PMRpro has said, the CCG is there for a reason if you don't get any satisfaction from your doctor who, in my opinion, needs kick up the proverbial.

[Karendoz205 in reply to 123-go]

Thank you so very much.