Good morning all.
I am relocating to Wales tomorrow after more than 40 years in NW London.
Can anyone recommend a rheumatologist and a spinal surgeon (Orthopedics)? I will be fairly near St Davids, our nearest hospital is Haverfordwest but I'm told people are referred to Camarthan, Swansea or even Cardiff for treatment.
Grateful for any experiences/suggestions/local knowledge.
Thank you!
Really sorry to disappoint you - Wales is on my list of "can't live there" places I fear.
However, I suggest you PM Wendy on the LupusUK forum who lives down there somewhere and she will tell you about the local set up - she has fought a long battle with the health board to get lupus services improved - their idea of suitable management of a complex lupus patient was a "GP with a special interest" who then disappeared anyway. I was seen by one of them - he hadn't a clue!
It is a long and complicated story which she has written about on their forum. Her own wonder-doc moved to Cardiff and was perfectly happy for her to travel to him but NHS Wales wouldn't allow it. So she was going privately to London.
healthunlocked.com/lupusuk/...
I notice the poster has her email and phone nos as well, Tell her I sent you 
I hope you enjoy the quieter life in Wales.The chance to get back to Nature is a great part of Welsh life , but I am afraid it does come at a price when it comes to Healthcare.
The waiting list for Rheumatology everywhere is much worse than England.
Devolution also means that if you have complicated or less common health problems you cannot be referred over the border to England to the best specialists on the NHS unless they are part of a free CoE.
Wales NHS say that this is because they have specialists there and Rheumatologists but the truth is that they have a severe lack of Consultants everywhere and most of them are only knowledgeable in the more common conditions.
My GCA was noticed by an Opthalmologist on an appointment for something else. She had already been asking Rheumatology to see me for the other issue and I hadn't even received a letter from them , funny considering they had sent me to her for an delaying tactic , sorry evaluation eight months before. She sent me out of region and ordered an emergency check over border despite the rules because she wanted me seen and on steroids quickly this was pre COVID.
I am now in remission from GCA , but still have problems that Rheumatology should be involved in treating , I still haven't had a local Rheumatologist since before that Opthalmologist appointment despite angry requests from Senior Consultants in three other Departments.
I was sent to a Behcets CoE for testing in Aintree around the same time I got GCA and they dealt with recommendations for my care but they couldn't do much because of the differences in things available between Wales and England .
They also wanted me to be sent to a Dysautonomia Clinic in London but the GP used the same argument that they aren't allowed to refer outside Wales , which isn't true , it's just that the Trust's will fight tooth and nail to get out of doing it and having to pay for it.
To be honest , my health is an issue that is likely to make me move back over the border to England as from there they will send you anywhere if you need a particular type of Specialist. Wales is great for people with no long term health problems , whom will only ever need acute care which makes the free prescriptions and parking appear amazing.
The South of Wales has more options but if you feel that you want a more definitive answer or a quicker appointment with a Consultant rather than a junior registrar ( it's the only person you will see first time out ) you may need to pay for an initial private consultant elsewhere and have them recommend treatment to your GP.
If you have already had a diagnosis from a Rheumatologist in England your best step forward is to contact them via their Secretary and ask them to write you a letter explaining your diagnosis and asking them to continue your current treatment plan . Get them to send the copy to you so that you can give it to the GP surgery you are going to join as soon as you sign with them and then ask for an appointment , face to face , with the GP at that Practice most used to treating patients with PMR or GCA.
We have also had a dental crisis similar to that reported on the news in England for more than fifteen years. You may be luckier in the South but the only reason I have a NHS dentist is because my other health conditions cause dental issues which got me on the hospital list.
Before that , I couldn't find an NHS dentist from the moment I moved in 2005 ( well one whom added to my dental problems) , most people I know are not on a list after their dentists retired.
I agree with Pro , contact Wendy on the Lupus forum , ask for her advice on names etc. ( or if you can get pointed in the right direction) on a better Rheumatologist in the area , but more importantly , for a knowledgeable GP surgery near you whom is used to treating things like PMR.
Someone on this forum may be able to help with a good GP near St. David's.
The GP is more important than the Rheumatologist if you have already been diagnosed in Wales , as the Rheumatologist , when they do see you , are less likely to see you more than once ( if at all ) . They will confirm your diagnosis but then discharge you , or won't see you again even if you are on the list , after treatment begins , especially now post pandemic.
Good luck with your move , Bee
Thank you so much for the time you have taken to respond so fully.
What is a" free CoE" please? That means Church of England to me!!
As Pro said , not sure if there are Centre of Excellence units for PMR or GCA , but if there are Pro would know.
Not that I know of. Leeds would rank alongside them because of Prof Sarah Mackie but it isn't official. Gateshead and Norwich have superb teams too.
Health facilities in Wales are not exactly first class. My family have lived in Carmarthenshire and now Swansea. My sister’s godmother who had PMR who lives in Swansea used to go up to London by train to see a rheumatologist there. She is now in remission though.
Thank you for responding. It all sounds a bit gloomy!
Pembrokeshire is lovely. As a child we used to go down to Whitesands Bay near St Davids virtually every weekend and go camping. Fantastic wildlife.
It's a beautiful place - but the healthcare options really are disastrous in places. Rural areas are always difficult, I own the perfect retirement flat in Whitby which my daughter lives in as that was where she was stationed when she qualified. She has told me I can't live in it - it is 45 mins in blue lights to the nearest hospital anytime, along roads that are packed with tourists in the summer and snow/ice in winter. Cousins live in deepest Dorset - no snow but tourists clogging the roads to the "real" hospitals. They naively said "but they'll move over when they see the blue lights ...". There is something called the golden hour for severe trauma and cardiovascular events - living in a remote area means you would need the helicopter to meet that. They don't fly in bad weather and often not at night.
My friends used to live on a farm near Harlech. A couple of years ago the husband had a heart attack , my other friend had to give her husband CPR for 55 minutes before the Ambulance could get to him , not in tourist season but in Winter because of the difficulty getting down the lanes. They've moved onto Anglesey now , but even if the Ambulance can get to us quicker our local small hospital is not open (except for minor injuries as there is no doctor) after 8 pm and at the weekends . That means a 30 minute drive even with the blue lights on to the hospital in Bangor or a lift in the helicopter.
My other friend was heading to a myocardial event and went to our surgery which just diagnosed a possible cold. She went on holiday to Kent where she had her heart attack. As she was there the hospital could send her straight to Papworth where she had an ablation and pace maker fitted. They told her categorically if she'd been at home she could have died as the service here would not have known what to do for her particular event. They got her a interim accomodation to be able to have the right cardiac physio as they checked and did not want to put their good work to waste. As she needs regular checks and care they made the reluctant decision to move down to Kent leaving their parents just to be sure they would get the right care.
Wales also has an unwritten one cataract surgery if you can get away with it policy if the patient is over a certain age. If I could advise anyone with a chronic illness considering moving to the country I would definitely say choose somewhere other than Wales , the staff work hard and can be lovely but they just don't have enough specialists or any up to date services.
Sounds scary. However, we are not really in a rural spot and certainly not isolated. There's a hospital in Haverfordwest and the roads are actually very fast. Here's hoping...!
Sorry - that counts as rural. My daughter was a paramedic based in Whitby, now works in Scabs, the other hospital is James Cook in Middlesborough. Haverfordwest is about 15K population? I have a hospital down the road in a similar size town - we are rural and the cardiac cathlab is 50 miles away. We have 4 helicopters for a region twice the size of Pembrokeshire. That ambo has to get to you first and that adds time. We sorry to disillusion you - but Wales NHS is in a mess, worse than England.
As a note - Haverfordwest hospital has 260 beds, Carmarthen is the largest hospital with 400 beds and more major services but even so - it will be Morriston in Swansea for the big stuff.
Risk of PMR to GCA
From 5mg of pred to 40mg 🙄
Methotrexate to get of Prednisolone 
Down to 5 mg of prednisone 
