Caught up in RA and GP political fight. Forgetting patients needs...

[rubina786]

Hi all, in a flare and been trying to get prednisolone from my RA for 5 days now. messages, letter and went in personally but they said the GP has to prescribe it. Went to GP and they insist it has to be from the RA. Am stuck in what appears to be NHS politics or something...shunted from pillar to post went you can hardly move due to pains is very hard to bear. The GP (locum) said he could not prescribe it as it was not his area of expertise! I have had RA for over a year and 4 or 5 flares...I know how many tabs work and how to wean myself off too. To call me in for an appointment to tell me that was so stupid. I feel totally let down the RAs nurse is never available. GP on hol and others not helpful. Even offered to pay for meds myself but was told I had to have a private RA prescription. NHS has gone gown so bad that patient's care seems least important. Now really desperate. Has anyone used pushdoctor? Online service or ordered prednisolone online? No way I can make it to 111. Am 62 and alone. Literally have no one to call or ask for help from.

Online ordering seems the only quickest and easiest option.

Will try that first and also pushdoctor to join when I can function again (i hope) ...let me know please if anyone has had any experience with these...sorry if not clear..am in too much pain to think and to type. Xx

Rubina

[Treetop33]

Yes definitely my experience, and sorry to hear you are in so much pain. GPs can prescribe Pred themselves.

I wrote a letter to the practice manager of the GPs which moved things along well. Are you able to do that?

[Mifford]

I’m not sure but if the rheumy wants the gp to prescribe it I think they are meant to write and tell them. My gp won’t do me a steroid injection without the rheumy say so so the rheumy nurses send a fax to the practice asking them to go ahead urgently and then they do it. Maybe if the rheumy office are saying it must be the gp ask them to send them a message confirming that? It removes the responsibility side of it from the gp and they become a distributor kind of thing which keeps them happy so it might just do the trick. If it doesn’t work then your gp practice should have a patient liaison officer - ask to speak to them and see if they can help. The hospital will also have a PALS and you could speak to them as well.

Do your RA nurses have an answerphone service? The way it works here is I ring the number, leave a message and they get back to me within 24 hours - it’s usually the same day depending on when I leave it and how busy they are but always within 24 hours during the week.

Good luck and I hope you get some relief soon xx

[rubina786]

Will try that. Thanks

[Lupiknits]

The piggie in the middle problem happens too often. Sometimes the consultant in question is high and mighty and the GPs resent that, but the patient should not suffer. Rheumy should have written to the GP to indicate the meds, then the GP takes over, That's normal practice, unless it's something that only hospitals can prescribe and supply. I can't understand the problem with your GP refusing because it's not exactly an unusual med and your GP is your primary provider.

i think the advice to speak to the practice manager is a good one.

[maggielee]

It a interesting discussion for me, as I specifically ask rheumy nurse last week if they would prescribe prednisolone to as part of my treatment if required & outright said no they don't do that. Wanted to know as I realise it is often given to control flares, will see what GP says as I have been struggling as well. ML

[spzgirl51]

Hello rubina786 ,

I hope talking to your practice manager helps? As it is the weekend and your gp surgery is probably closed? I would suggest doing the thing of last resort?

By that I mean call an ambulance and ask for an assessment in a and e ? But only if your pain levels become too much to bear? But it is horrible that you are left to struggle on alone?

I think I would have to be half dead before I did that myself. But it depends on how restricted and in pain you are. Keep trying ! You are worth it?

[rubina786 in reply to spzgirl51]

Once when this happened I did have to call an ambulance. Was taken to hospital. Kept waiting for 8 hours in agony and then finally sent home. I could hardly walk even with a zimmer frame. Few hours later they called and said they had made a mistake!!! and were going to prescribe it now and get my chemist to deliver it!!! They insisted I have 12 tablets of 5mg.. for 3 days...which I said was way too much as I have only ever took a max of 4 or 6 for a flare then reduced slowly. The doc insisted so I did! Landed up in A&E with a heart attack the next morning! Back in emergency and that resulted in stents. The whole ethos of not treating in time and then overdosing me seems to be an on going saga (with my old GP and hospital). Sadly my current GP and RA are both away. So am scared to go to A&E. 111 might be an option but can't drive today. In bed. Nothing going to happen till Monday. It is very hard to get taken seriously. No ownership for a viable alternative to their processes...the bottom line appears to be... treat patients so bad they leave or die.

I earned a 6 figure salary and paid my dues for over 40 years in taxes and NHS contributions. Only been sick a year now. The system fails you when you need it most. I am sorry...having a right moan...but they cause so much stress and in a flare nothing is easy to handle...the pain must strain the heart too I suspect...

Ordered some online and am hoping they will arrive soon!!! ..relying on GP or 111 or A&E will waste more days and swelling is increasing in hands ..luckily can still waddle about. Took a taxi to a&E once. Was sent home then too. Giving up the fight.

[spzgirl51]

Wow rubina786 ,

I am truly sorry you have had such an horrendous experience at a and e!

If that was me I would never want to go there again? (Unless I was unconscious and unable to object?)

Do you have a local chemist that deals with your medication regularly? Perhaps you could phone them and ask if they could issue you with an emergency supply? Sometimes they will be able to help?

Do you live in a town where food can be delivered from a local restaurant? By deliveroo for example? I know its expensive? But if you feel sore and immobile , cooking becomes difficult?

Perhaps you need to take things slow and try and manage till Monday morning ? You will be able to phone your gp for help and a prescription then? And ring your consultants secretary or their department's helpline?

Sometimes, when I feel a bit stuck and sore I make a big sandwich and a cup of tea and have an early night. I hope I will be able to do more tomorrow?

Sorry if I am not helping much?

Please take it easy and have a quiet rest this weekend xxx