10years of abroad RA diagnosis not accepted by NHS

Josephine75

Hi,
I am a 40 something year old RA patient with a 10-years history of diagnosis and treatment from Germany and Austria. Before I came to the UK (to be a proper tax paying employee) I have been treated with Enbrel, which worked wonderfully, but now the NHS rheumatology consultant disagrees and believes I am not suffering from RA. He has not revisited previous letters and documentations (which are in German, I am afraid) nor has he requested to speak to the rheumatologists in Germany or Austria, respectively (they all speak English well).

I am now off Enbrel (and any other treatment except some painkillers) for more than 18 months, the result is devastating.

I am not sure how to proceed from here.
My GP has now requested a second opinion, but waiting times are rather long, especially for second opinions, I understand.

With regards,
Josephine

helpline_team

Hi Josephine,

I’m sorry to hear that you’ve been unable to transfer your RA treatment from Germany and Austria to the UK. Unfortunately, guidelines for medical treatment and even criteria for diagnosis can differ between countries, which can complicate matters for people moving from one country to another.

You have described your current situation, being off Enbrel for 18 months, as devastating. This may well prove the most practical focal point in tackling the situation: your Rheumatologist(s) and GP need to understand and treat your current symptoms. While it may take some time for them to confirm a diagnosis or a medicines regime, it sounds as if it would help to know more about the reasoning behind your Rheumatologist’s diagnosis and his plan for your future treatment. Would it be possible to arrange a conversation with him about these issues? If you do not have a direct contact, then your hospital’s PALS (patient advice and liaison service) may be able to put you in touch.

Regarding waiting times, there are a couple of things you can do that may help to move things along. One is to keep your GP up to date about your symptoms and the impact they are having on your life – if there were any change or deterioration, your GP could flag this up with the hospital. You can also make sure the hospital is aware if you would be willing to take a short notice appointment, e.g. if another patient has cancelled at short notice.

At any time, if it would help to discuss the situation in more detail, or talk over how you’re feeling about it all, you would be very welcome to call the Arthritis Care Helplines (Monday – Friday, 9.30am – 5pm).

Best wishes,

Rachael, Helplines Worker