Rheumatologist Recommendation in Bridgend South Wales

[Snowy12]

Can anyone recommend a private rheumatologist who possibly specialises in GCA in the Bridgend area of South Wales. I am willing to travel 30miles or so?

See my Post below

Thanks

healthunlocked.com/pmrgcauk...

[Hidden]

I'll send you a pm. I see several different Consultants at The Heath, including a Rheumy.

[Hidden in reply to Hidden]

Thank You Spartancloak 🌷

[jinasc in reply to Hidden]

How far is Bridgend from Bristol?

Also contact Wendy Morrison Southwest Support Group. 👍

[Snowy12 in reply to jinasc]

Hi not too far I’d be happy to travel there.

[jinasc in reply to Snowy12]

Britstol Royal Infirmary,one of the best.

Professor John Kirwan ran the Rheumatology, one of the most respected leaders in research on PMR & GCA. In fact put his name in your search engine and take a look.

uhbristol.nhs.uk/for-clinic...

This link takes you to the names of the Consultants.

The PMR GCA Southwest Support Group can also tell you about the dept.

[PMRpro Ambassador in reply to jinasc]

Doesn't mean it is still good though I fear!!

[jinasc in reply to PMRpro]

I think Sami is still around. If they contact Southwest PMR GA support group they know the best in that area.

[Blearyeyed]

Are you willing to cross the border for a consultation?

Going a little further or seeing a Rheumatologist in England with the right specialism whom can give good advice to your GP and strongly recommend the right referrals and tests going forward , even if you do not see them long term , may be very beneficial in your case.

I know from conversations with other sufferers of Chronic Illness ( they are trying to deal with little help for Fibro , Lupus and others ) that there is a shortage of knowledge as well as Rheumatologists in the Bridgend area , just as in my area of Wales.

[Snowy12 in reply to Blearyeyed]

Yes I definitely would be willing to go as far as it takes.

[Mrsd12f in reply to Blearyeyed]

That’s for sure!

[Sho-Sho]

Dr Jo Robson at the BRI is excellent - I have GCA and was referred to her by My Rheumi in Bath.

[Snowy12]

Had call from Proff Choy’s sec not available till March next year!

[Hidden]

spirehealthcare.com/spire-c...

Have you tried all of these? I haven't looked to see what their specialties are.

Some years ago, I was having problems with my Health Board & with seeing an Ophthalmologist somewhere other than where they wanted me to go. Specsavers told me to go to the A&E dept at the hospital I wanted to go to, which I did. I then saw the Consultant I wanted to see. It's hard work Snowy but you'll get there. It's a pity your GP is so uncooperative

[Snowy12]

I am wondering now if I need to see a neurologist instead of a rheumatologist May be a quicker route

[Blearyeyed in reply to Snowy12]

You need to see both really , as quickly as possible.

The call about a March appointment and no other practical help or advice offered is terrible , and shows a complete lack of responsibility for the dilemma that this Rheumatologist is part of causing.

This , unfortunately , is another common thread in care in Wales at the moment too. They have no real system set up for treating ' Orphan' or less common Chronic Conditions but refuse to refer people beyond the border for the right help either. It's a fight that needs playing out , and has nothing to do with Westminster but the Welsh Assembly whom are in charge of NHS Wales decisions and funding . Unfortunately, all the people being affected by the system are just too tired or Ill to take up that fight for themselves .

In the meantime , I would say getting to the GP and politely demanding a Neurology Referral as soon as possible is key first .

Voicing your concerns at being given new drugs without any real diagnosis yet , and the fact that you are unhappy that in reality they are in no position to say that you have GCA or not because of how far along you are in treatment and how that gives false negative results , and that if it is GCA , changing your treatment would be irresponsible.

I would complain about your treatment at the GP and ask for a new Primary Care Giver.

And request for the GP to step in to request a quicker Rheumatology appointment as well immediately as well .

You could ring up and put in your initial request for an immediate appointment and complaint to the Practice Manager tomorrow , and ask to be seen either tomorrow or Monday by a new GP.

I would definitely call Rheumatology back and tell them the appointment is unacceptable and explain that you will have no choice but to make a complaint to the Chief Executive unless this is dealt with more considerately .

That you would like an appointment with a different rheumatologist for a second opinion , as you are unhappy with your treatment so far with your current Specialist.

If they do not sort something out , write a new post to let us know and we can give you more help to manage this complaint.

If you can , and have a friend or family member that is calm and polite in a crisis, ask if they can help with some of these calls and conversations for you , as the amount of stress the Health Service are putting you under is not going to be good for your health.

Yes, the irony of the health system making people more ill than the illness they should be treating is clear to us all.

I think it may still be a good idea to see a Rheumatologist privately , for help and speed , as this could help clarify things for you .

If it is GCA they will be able to confirm this , and come from the same Specialism so your current Rheumatology Department are more likely to listen to their views.

The GP will also be under more pressure to follow their recommendations immediately , reducing the waiting time you have in going through tests with a new Department.

If they actually agree with the Rheumatologists opinion they can give you a better idea of what you should do next , and which questions to ask and tests you need the Neurology Department to investigate , a letter can then be sent to local Neurology to enforce your position with a new Department. Which I will warn you now , will treat you like a brand new patient that has had no diagnosis at all , and you will feel like you have to build a new relationship with them .

I'm so sorry you are going through this , very much like me , but for other reasons.

My previous CoE in Liverpool , whom told me to get new referrals that they could not make for me because of the border situation, were genuinely dismayed about the inequality in services and access to specialists across the border we receive in Wales . They even asked wether I'd be willing to move . At the moment it is a step I am seriously considering.

Keep us updated , and perhaps try a cross border specialist that is highly recommended privately by the Charity itself , or , in the opinion of the moderators will be most helpful for patients with complex cases and GCA.

Take care and get as much rest as you can between the battles. Bee xx

[Snowy12 in reply to Blearyeyed]

Thank you so much for taking the time to provide me with all this valuable advice. Without you all I think I would have jumped off a bridge. I was thinking about it yesterday for a little while until one of my dogs intuitively jumped up on my lap and licked my arm as if she knew how I was feeling. This put me in a different frame of mind immediately.

I am so lucky to have joined this forum and grateful for all the advice and support you all provide xxx

[Blearyeyed in reply to Snowy12]

We are all here for you , not sure we could all fit in your lap with the dog but we are sending you that same sort of support whenever you need it.

You will get there xxx

[PMRpro Ambassador in reply to Snowy12]

Neurologists rarely deal with GCA in the UK - different in other countries.

[Hidden]

Lots of Cyber Hugs 🤗 Snowy 🤗

[Snowy12]

Xx