Royal Free: Another question! How do I... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Royal Free

volvox45
volvox45

Another question! How do I get referred to the Royal Free SSc specialist unit? I live near enough to make it easy to get to. My care is currently under three departments in the local hospital (gastro, thoracic and rheumy) which seems crazy as they don't talk to each other. My GP hasn't a clue, frankly. So: should I ask my GP for a referral, or one of the consultants, or can I self-refer?

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My GP was more than happy to refer me to the specialist unit.

Okay, I will try asking... and was it worth it, for you? Did it help, and if so, how?

Be your own advocate. Be polite but be forceful. I just recently told my GP that I felt like I had to suit up of for battle in order to receive medical care. It’s true.

Poppy221
Poppy221 in reply to amc282

Aargh. My consultants are great and respond within a couple of weeks at most to a query. GP in person is helpful. It's getting a message through that takes the effort and the time. Like trying to find out the results of blood tests. "Oh, if there was a problem I'm sure they'd have rung you." Hhm - and what about that time when you hadn't received the scan results and hadn't noticed?

amc282
amc282 in reply to Poppy221

I had blood work 4 weeks ago at the GP office because my May 2020 Rheumy appointment was cancelled. Not a dicky bird from anyone.

Poppy221
Poppy221 in reply to amc282

Chase. Politely. Remind them you have a serious illness and are concerned. Or just say stuff it and book a telephone appointment with the GP to discuss it. Once you've managed to get to the front of their phone queue........ In theory reception should be able to tell you whether or not the results are back, though they can't comment on them, and that is then followed by getting to talk to someone who can comment on them....

I see a local rheumy for regular things, and my gp referred me to royal free as well. My local rheumy is now referring me to the gastro unit also at royal free as he says that it is too complicated for the local ones to deal with (although they have been treating me up to now)

I used private healthcare to get a referral there and had my first appointment within a couple of weeks. Good luck!

Must get your GP to refer you

I will certainly ask to be referred, if only for someone to talk to. I told my GP about the problems I have with my guts and his response was, is that an effect of scleroderma? He literally has no idea.

I don't know what "treatment" is possible though. The only thing I have ever been offered was antibiotics for the SIBO and they didn't work at all.

This is such a lonely condition! When you know so much more than your own GP...

You can’t self refer. Your GP or consultant could do it. Jen

I believe every NHS patient has a right to be referred to a consultant of their own choice if they are not happy with their current one, irrespective of location.

I would agree that if you can afford the initial consultation (and it will be something like £150-200 alas), then going private to the consultant of your own choice (assuming they are taking new patients at the moment, which may not be so) is a good way to 'make something happen'. Once the new consultant has taken you on privately, they usually are happy to put you back into the NHS, but to themselves, not whoever you were with.

I may be facing the same issue as you, so will be following your saga!

PS - one of the best things about going private is that you can actually look them up on the Internet, which should also give you teh phone number of their private secretary - who is on the end of a phone line!!!! (SO unlike the poor old NHS.....) The sec can then talk you through how to get an appointment, and whether the GP needs to refer you first. They are well used to patients starting private, then going back into the NHS.

Hi. I did some research, then asked

My GP to refer me to Royal Free. That was 6 years ago. Really happy I did. GP didn’t and still doesn’t understand the condition. “Guess not a lot do. Hope this is helpful.

My understanding is that under the NHS you are entitled to a second opinion if you have a rare condition.

Thank you. I will certainly put in a firm request for a referral next time I see a GP (I say "a" GP because I never seem to see the same one twice, which doesn't result in any continuity of treatment).

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