Country Relocation - Advice & Guidance appreciated

[Sparkinside]

Hi , I've just joined this Community and this is my first post. I am currently living in Australia and will be locating to the UK later in the year. I was diagnosed with Scleroderma (Limited) & Raynaud's in Aug 2016. I am keen to ensure my current health /treatment plan is maintained with my UK relocation. Any advice & guidance /tips & hints would be greatly appreciated . Thinking acclimatisation to the cold weather will be a priority struggle!

[amd21]

Hi there - if you have problems with Raynauds then the South East of England is probably your best bet its the dryest & warmest region - southwest is warm but much wetter. Only problem is that its very expensive & overcrowded. The SRUK website is a good place for info on local services as not every area has highly specialist services.

[Sparkinside in reply to amd21]

HI amd21, thank you for your reply it was remiss of me to not mention that I will be relocating to Somerset.

[Mylreaclairelee]

Hi, I have recently arrived back in the uk and we have settled near Shrewsbury in Shropshire. I used to live in Hampshire but find that far too busy and crowded now. 2 years ago when I lived here for 6 months I attended a conference on Scleroderma in Cambridge and was lucky enough to meet Professor Denton who suggested i ask my doctor to be referred to The Royal Free, London specialist Scleroderma Clinic. It took only 3 months only to get an appointment (whereas i had waited for 6 months in Winchester to get an appt with a rheumatologist). It was so worth it!!!!! I believe there are 4 or so of these specialist clinics around England.

You see a doctor, then Prof Denton if you are very lucky, or one of his Rheumatologists and then a nurse. It is a fabulous experience believe me. Everyone understands and cares. They do all the blood tests there and then and the reports got sent out within a week.

So I would strongly recommend it if you are well enough to do the journey. On my next visit which is 4 months from the last one, they will do ECG, Lung Function and Echocardiagram. They have asked my doctor to order a gastroscopy locally and for the results to be sent to them.

All the best with your move and please keep in touch.

[Sparkinside in reply to Mylreaclairelee]

Thank you so much for your recommendation on a Specialist as my current one here in Australia is a Medical Advisor for the Scleroderma Society, so I feel very supported with someone who has a keen interest in this condition. Was hoping to find someone with that similar focus over in the UK. Prof Denton sounds ideal and I would be happy to travel to London to continue the health support program. I will be living in Somerset . Agreed its important to get regular ECG, Lung function and Echocardiogram checkups and will get these done prior to leaving Australia to get one final check up prior to departure. I currently also have monthly blood tests and wondered if that was something that would continue in the UK. I'm just worried about the transition in climate as anything below 20c feels cold to me so going to be a big challenge to keep warm as i'm prone to digital ulcers. Thanks for your guidance and help and look forward to keeping in touch, Many thanks Angela

[MilkMaid]

Hi Sparkinside, I agree with amd21 that really you need to say roughly which part of the UK you are moving to. Support groups & specialists are few and far between in some areas of the UK.

[Sparkinside in reply to MilkMaid]

Thanks MilkMaid, I will be moving to Weston-super-Mare in Somerset. However, for the right Specialist I would be willing to travel. I was mindful of coming from a very hot climate to the cooler weather of the UK which will be a challenge to acclimatise with the Raynauds .

[Mylreaclairelee]

I was having 3 monthly blood tests in NZ but for me here they say 6 monthly. It probably depends on your symptoms.

[Suzyannayoung]

Hi there, I have monthly blood tests. I live in Lincolnshire and my rhumy Dr at Lincoln. I have asked for a referral to the Royal Free as I feel I now need more specialist treatment, am waiting to see if I get an appointment. I have Diffuse Scerledema , polymytosis , raynauds, osterperosis etc, for my raynauds . I have a 5 day ( 6 hours a day ) infusion of iloprost before weather gets to cold, I am booked in for the end I this month, you can have more often. While it doesn't stop the attacks I haven't had fingertip ulcers for 5 years , although still pitted and very sensitive, didn't know if you have heard of this where you are 😊

[Sparkinside in reply to Suzyannayoung]

Hi Suzyannayoung, Thank you for your reply . I do get fingertip ulcers and like you also pitted and sensitive so I am expecting this to be more problematic in the UK. Thank you for the info on Iloporost as I haven't heard of that and will discuss with my Specialist before I leave. Why did you select Royal Free to be referred too for more specialist treatment, has this got a good reputation for our condition ?

[Suzyannayoung]

Hi sparkinside. On this site you will often here about the Royal free hospital in London, there is a Dr Denton and team that specialise in Scerledema , and everyone says how wonderful they are. I have developed microsterma ( think that's what it's called ), basically it's small mouth, the skin tightens around your mouth making mouth look small, thin lips and deep lines around your mouth. It has come on over 5 years but is now obvious and upsets me, with all we have to put up with its cruel that we can't at least look like we used to. Through this site I spoke to someone who had successful treatment at the Royal. It needs to be a specialist plastic surgeon in Scerledema as I've leaned Botox etc can make worse for us, it has to be your own body fat apparently , not a quick fix if as has to be done several times. I am waiting to see if I at least get an a assessment and could be suitable for treatment. I wouldn't be able to get this treatment with my rhumy doc .It is a nhs hospital and anyone can be referred. 😎