I'm thinking of asking for a referral to a specialist scleroderma/Sjogren's doctor, rather than the general rheumatologist I see here in Wales. Not sure if they'll let me cross into England. But I really hope so. Wonder if anyone on here sees Dr Flower in Bath? I read that she does a lot of research and trials. She's probably my closest specialist. If anyone has any other recommendations in the West of England, I'd be very grateful to hear them.
Thanks so much for your support. And wishing you all the best.
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Duck33
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I’m not great on geography but I think Swindon is in South West - in which case I can recommend Dr Elizabeth Price - who specialises in Sjogren’s but also sees and treats those with Systemic Sclerosis. She diagnosed me with the latter when I saw her privately in 2019, although my local Scottish doctors were reluctant to accept this, so I saw Prof Denton (privately again 🙄) last year who confirmed this unequivocally. They are close colleagues and often work together on complex patients with both.
Hello Duck, I live in Worcestershire and years ago asked to go to the Royal Free, more recently to Bath and last time saw Dr Victoria Flower, she was as lovely and helpful as her name. I will go to see her every 2 years my Worcester consultant in between, plus phone call from him the years I go to Bath. I saw Dr Pauling in Bath previously but he has moved to Bristol so that might be another option. I have a face to face with Worcester consultant today. Very lucky, there have been some cancellations and offered appointment today at the same hospital where I have an earlier appointment for a scan, so that was minor miracle.. this scan will hopefully be my last one for 3 recurring colon cancers, first diagnosed 10 years ago, 2 ops and SABRE radiotherapy the NHS have been wonderful in my case.Good luck with getting a specialist review it is your right to ask.
Best wishes everyone thinking about getting out the thermals.
Oh, thanks so much for replying and for the info. And really hope your consultant appointment goes well today. Sounds like you've been through so much. Really glad the NHS have looked after you so well. That's brilliant. And thanks for mentioning Dr Pauling. He'd be a wee bit closer for me than Bath... though not sure NHS Wales will let me go elsewhere. Reading online, it looks difficult to get a transfer. But I'll keep looking into it. Thanks again and you take care. Thermals! Definitely shaping up for them, now!!
Dr Pauling is a scleroderma specialist. He has moved from Bath to Bristol to start a specialist clinic there. I see him or one of his team around every 6 months at the moment. Don’t think you should have any problems about coming over the border. Going back a few years my mum had an eye problem that needed specialist care so got referred to Bristol eye hospital. Good luck!
Oh that's so interesting that Dr Pauling has started a specialist clinic in Bristol. I'd really like to go there. So good to hear about your mum getting the care she needed despite the border. I think it used to be easier to do cross border stuff, but in recent years it's all changed. Much harder now, apparently. But I'll have a go. You never know. Thanks again for taking the time to reply. All the best.
I've only just seen your post so sorry about the delayed response. I'm in Cornwall and I've been referred to Dr Pauling. I'm seeing him for the first time next week. I managed to get the referral via the NHS Patient Right To Choose.
My doctor wanted to send me to my local hospital, but they don't have a Scleroderma specialist, so I asked to be referred to Dr Pauling. You have the right to choose where you go - your doctor might not like it, but you do!
Yes, make sure you're referred to the right hospital! My referral got held up as my doctor referred me to the Royal Infirmary rather than Southmead.
Hi there, thanks so much for replying. And for the information about Dr Pauling. I'm definitely going to ask about getting referred. Unfortunately though, I spoke to a medic friend recently, and because I'm in Wales, apparently I don't have a right to choose to be seen in England. So it looks like I won't be allowed to cross the border. Frustrating. But I'm going to ask anyway. Hope your appointment with Dr P goes well. Sounds like he's a great guy. All the very best and take care.
That really isn’t fair if you can’t be referred outside Wales, particularly if there isn’t a specialist there. Please keep trying. I’ll keep my fingers crossed.
Thank you. I’m feeling nervous about going even though he sounds very nice!
Thanks so much for your support. Really appreciate it. And I’ll be rooting for you tomorrow. I’m sure it’ll go really well. Everyone says he’s lovely. Safe journey and all the best.
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