Royal Free appointment

[Badflower]

I was due to be seen at Royal Free in May for my annual appointment. I was informed today it has been cancelled and rescheduled 6 months later in November. Anyone else having appointments cancelled? Are they short staffed I wonder!

[Prettyfalcon]

Hello, I’ve had the same - appt in March moved to late August. Are they your local hospital or do you have shared care and access to another consultant more locally to you?

[mind1e in reply to Prettyfalcon]

Hi, I've has my April appointment moved to August too, unfortunately.

[Badflower in reply to Prettyfalcon]

I saw a local rheumatologist once. At the time I was waiting to be seen at Royal free. I was promised another appointment 6 months later. It never arrived so I never chased as I thought I would be looked after at Royal Free. I have now got in touch with the local team who admitted an error made and I now have an appointment scheduled. Think I’m going to need a local team as Royal free scleroderma team obviously have problems with appointments

[Prettyfalcon]

I have shared care with the RF and my local hosp in Suffolk. If you don’t have the same arrangement, it might be worth asking for it. Your local hosp can do a referral or the RF can do it. Mine was processed really easily and I see Prof Denton at the RF twice a year and a rheumatologist at the west Suffolk twice a year. They do all the treatments/scans/med reviews/iloprost infusions etc locally under direction from the RF and it is working well so far.

When my appt was moved, I assumed it’s because they have labeled my SSc as ‘mild’, and there are others who need to be prioritized but maybe they are short staffed like everyone else.

I hope you get sorted soon - if you are struggling and need to be seen, maybe give them a call and see where you are on a cancellation list? Good luck

[Badflower in reply to Prettyfalcon]

blimey ! My experience very different. I’ve never seen professor Denton. My appointments are yearly. I was told scleroderma mild but they didn’t identify I had severe pulmonary hypertension. Luckily a scan done locally for another reason identified it so I did end up with the pulmonary team at Royal Free who saved my life and care superb.

[cpns in reply to Prettyfalcon]

sorry to jump on someone else’s post, but looking at the responses people like yourself are talking about shared care. I live in just outside London and am seen by the local hospital. It is ok, 6 monthly appointments are regular,have been pro active on hand therapy lately, but annual heart scan and lung function tests have not regular. I know the nhs is struggling and I am not aware that there any major changes there, so I am just waiting it out. I have often thought about a referral to the royal free, but did not want to jeopardise the care I have locally - especially as taking time out of work is hard. The idea of shared care sounds very appealing. Can I ask what this looks like and how it came about

[Prettyfalcon in reply to cpns]

Don’t be sorry! The shared advice and guidance on this forum is what led me to see Prof Denton in the first place

A consultant at my local hospital mentioned a referral to the RF in Jan 24 and not knowing why, I did some research and discovered the Scleroderma Clinic. The waiting times were pretty lengthy so I was fortunate enough to use my PMI through work and managed to see Denton 3 months later as a new patient. He wrote to my GP (who has fortunately been incredible at expediting various treatment requests and tests) and my rheumatologist at the West Suffolk. Denton did mention that some PCTs can be funny about shared cared due to funding pots but that the majority recognize the need for specialist care with this condition. Denton has also popped me on the list for Botox in my hands for my Raynauds, something I never could have accessed locally. I’m basically seen by someone once a quarter and with some of the issues I’ve had, this has been amazing as I’m only 2.5 years into my diagnosis and I’ve needed different treatments and the condition has progressed. Denton put me straight on to MMF which is something my local trust refused when I requested it and it’s been an absolute game changer for me, despite giving me spots!

Shared care shouldn’t jeopardise your local care and I’d start with a convo with either your GP or your rheumatologist. As badflower said, you have to keep advocating for yourself to keep things moving. Good luck! x

[cpns in reply to Prettyfalcon]

Thank you so much, that is really helpful and has boosted my confidence in making that initial request xxx

[Prettyfalcon]

I should probably preface my story with the fact that I used private healthcare through work to access Denton in the first place and he then suggested/enabled the shared care. It’s all a bit of a lottery isn’t it!

[Badflower]

It sure is a lottery and advocating for yourself is the only way through the minefield but it gets so tiring x

[tanya1981]

just call them and they will reschedule. I did so recently when they pushed my Feb annual appointment to August. Now it’s back in the diary for March

[Badflower in reply to tanya1981]

I will try that thanks