How do I get a referral?

[ClaudeV]

Hi guys, I have not posted for a while. I have been diagnosed in December. Took 15mg of pred and have been tapering since. My fingers and toes are really bad now so have to up the pred again. My GP refuses to refer me to a rheumatologist. All I have read point towards being followed by a rhumi. What can I do? Who can I go to at the surgery to complain and be referred? Many thanks 🙏🏼

[Hidden]

Hmmm? It seems our GP is the official gatekeeper! S/he has the right to deny a request to see a specialist. However, you have the right to ask for a second opinion!!!

Check this out, maybe it will help!

nhs.uk/chq/Pages/1317.aspx?...

Best of luck.

PS - My GP said yes when I asked to be referred... although I had seen Rheumy privately a few times and she knew that...

[ClaudeV in reply to Hidden]

Thank you Mamici, actually that’s what I did. I have seen a Rheumy privately who is now saying I have been wrongly diagnosed and ordered a whole series of new tests. She says I am too young for PMR and the pain and puffiness in fingers and toes which doesn’t go away suggests Rheumatoid Arthritis of some kind... seeing her again on Thursday with the results. but was afraid to mention to my Gp... shall I ask her to write to my Gp? The problem is, she is talking about long term treatment and I won’t be able to afford that privately... so need to see someone on the NHS... thank you again. Any advice welcome.

[Hidden in reply to ClaudeV]

Wow! Yes, If she does not automatically write to your GP, which I suspect she will, I would ask her to send letter.

You might also suggest she add that you're looking at "long term treatment," which you will not be able to afford and see if she )Rheumy) can request (in the letter) that you be referred under NHS?

My GP referred me and requested that I continue seeing Rheumy that I had seen privately 3 times... the referral people were ever so accommodating! There was never a lapse in continuity!

I do not understand why they have to be so difficult!!!!

Good luck!

PS - I'm happy if it's not PMR... but don't know a lot about RA. : (

[ClaudeV in reply to Hidden]

Thank you so much Mamici! Hope my GP will understand, she is a very nice person otherwise. She thought we could “handle it ourselves”. I am afraid RA is worst with PMR/CGA there is a chance that it’ll go away. With RA it is something you’ve got to live with from what I understand plus a risk of permanent damages to the joints

Cx

[Hidden in reply to ClaudeV]

I hope she understands too... I know they are under a considerable amount of pressure and the rules/guidelines they must follow are very strict... but sometime I just don't understand the decisions. : (

[GOOD_GRIEF in reply to Hidden]

RA doesn't go away. It's progressive. It can go into remission for a while, sometimes for a long while, but often the meds stop working and you have to switch to something else that doesn't work as well and can't go back to what once worked.

I learned this from friends who have RA: one with juvenile onset, one with adult onset, and one with late onset.

I was relieved when RA was finally eliminated as a diagnosis for me.

[Hidden in reply to GOOD_GRIEF]

Wow! Bummer.

[Rosbud in reply to ClaudeV]

From my experience of working for NHS our consultants would transfer patients to us from their private work automatically if the patient explained they were self funding , so maybe speak to his/her secretary X

[ClaudeV in reply to Rosbud]

Do you mean that my private rheumatologist can refer me directly to a NHS consultant?

[PMRpro Ambassador in reply to ClaudeV]

If you are lucky the private rheumy will be able to simply transfer you to their NHS list. Almost all doctors who do private work in the UK also work for the NHS even though not all NHS doctors do private work. So it is worth seeing if you can find a private doctor who works in a convenient place.

[ClaudeV in reply to PMRpro]

Yes that would be ideal thank you. I’ll ask her tomorrow- I have a feeling she only does private though... but perhaps she can ask one of her colleagues... many thanks for your input most helpful C

[Hidden in reply to PMRpro]

Even a better solution!!!!!

[Rosbud in reply to ClaudeV]

Yes , that was the system when I worked in N H S , they normally just add you to there own N H S list x

[ClaudeV in reply to Rosbud]

that would be excellent, lets hope she can work it out for me...

[ValFF53 in reply to ClaudeV]

I worked as a Staff Nurse in Outpatients for many years and the Consultant who saw the patient privately wrote to his NHS secretary and requested they book an appointment to be seen under him/her at their NHS hospital.

Hope this helps

[ClaudeV in reply to ValFF53]

Thank you, yes that would be great my fear is that she is only working privately. Seeing her this am. Will keep you posted. Thank you all for your input.

[PMRpro Ambassador in reply to ClaudeV]

She may be right - but she is totally wrong on one count: you are NOT too young for PMR. The international guidelines say "over 50" and there are penty in your age group. The guidelines saying over 50 doesn't mean younger people don't get it either - it is just it is less likely.

I can't remember what dose you are on - but RS3PE syndrome causes puffiness and pain in hands and feet and is not uncommon in PMR. It also responds to pred - but maybe you are on slightly too low a dose. I had hand and foot pain and swelling with PMR and it lasted some months after being put on pred. If it is caused by tendonitis/synovitis it can take a long time to resole if you are on a lowish dose of pred.

Of course this is the main reason rheumies are of the opinion that all PMR patients should be seen at least once by a specialist - they feel the specialist has a broader view of the area. That wasn't my experience - but the main reason for not seeing one is the time it takes!

[ClaudeV in reply to PMRpro]

What is RS3PE syndrome?

Yes I might have come down too quickly as I was doing pretty well. But the symptoms of RA and PMR are pretty similar. I just want to make sure I am not ignoring something that will cause permanent damage to my joints as RA unlike PMR is not reversible...

[PMRpro Ambassador in reply to ClaudeV]

Google it

en.wikipedia.org/wiki/Remit...

[SheffieldJane]

I think your GP is being a bit odd. I would be inclined to share the findings of the Rheumatologist with her and insist that you now need the care of a specialist. I wonder if financial cuts are bending our GPS out of shape. Your finger and toe symptoms do not sound typical of PMR although the hands and feet can be involved. This is hard. Is there another GP in the practice that you can see?

Sometimes doctors get a fixed idea about us that they seem wedded too. It is not helpful. I wish you the very best. Let us know how you get on.

[ClaudeV in reply to SheffieldJane]

Thank you Jane, yes that’s what I am planning to do. Go back with the results or get my rheumatologist to send them beforehand with a letter, then go back to see my GP... 🤞🏼

[yogabonnie]

So sorry you are going through this difficulty with GP and diagnosis. Perhaps I missed it. What dose of prednisone are you on now.???

[ClaudeV in reply to yogabonnie]

Went down to 7.5mg now went back up to 8.5mg

[Peggles]

My GP has refused to refer me either. I was 51 when he diagnosed Pmr and I think he's got it right.

If I thought paying a specialist would make me better I'd do it in the blink of an eye!

[ClaudeV]

Hi guys, so I saw the rheumatologist this am. She reckons it’s an inflammatory arthritis, but thought it was mild (for now) I.e. no damage to the joints yet, so need to treat to slow it down.

She had already written to my GP and expect there will be no pb being followed by nhs as my insurance won’t cover it anyway. She seemed very thorough in her investigation and said I can take time to think it over and seek other opinions. So will do that as well. So it seems I will join another club of people with RA now... thanks for your precious advices and support.