Anybody with County Durham and Darlington NHS Trust?

[EmilieD]

Hi,

I was wondering if anybody here is being followed by the rheumatology team from County Durham and Darlington?

I've now seen a physio, a consultant and a nurse form the team. I know the name of the physio, but I forgot those of the nurse and consultant. The consultant I saw is not listed on the webpage. On the boards I've seen people mention their "rheumy nurse" and a "help line" they could call to ask question. I saw the physio in UHND and the nurse and consultant in Shotley bridge. My follow up care (including the bloodchecks for mtx) will be at UHND. My guess is I'll be seeing the nurse who works that day, and not necessarily the one I saw last week? Also, I'm pretty sure I was not given any phone number to call if I have questions.

What's your experience with this NHS trust?

Best wishes,

Emilie

[Ruth12345]

Sorry not in your NHS trust area however do live in North East and have been trying to find support group further south than Newcastle. That is the neareast one the NRAS have knowledge of. Do you know of any? Good luck with finding out the information you need.

[priss58]

This is an interesting post as I'm considering moving up to Durham this year. I was a bit worried about the situation up there. I live in the South East and have had RA for 26 years. My treatment here has been good. I see the rheumy nurse more than the consultant, and there is both a helpline and email contact. I'd be very keen to know how you get on.

[EmilieD]

Hi both. Thanks for your replies. I am very new to all this, so my experience is pretty limited. I had my first contact with the rheumatology team early December and was diagnosed (I think) last week. I am still trying to find out about things like groups, helplines and what to expect in terms of care.

What I can say is that the GP told me that the rheumatology consultants who were based in Durham all left a while ago, and that they have not been replaced yet. So my guess is that the team must be pretty stretched, with the consultants from the other hospitals covering Durham.

[priss58]

That sounds very odd to me, and a bit worrying. Is this the University Hospital Durham? How are your symptoms being managed now? Ordinary GPs won't be able to give you the specialist meds you will need. It's also my opinion that physio won't help, though it's good to move whilst you can - but don't push it! Having had RA for a very long time, I've been on several methods of treatment. My sister and brother also have RA. If you like, I'd like to keep in touch with you on here. I'll be looking into this myself, as I was hoping to move to Durham to be near family, and had hoped that my biologic treatment would be available. What about Newcastle? Can you get a referral to see someone there? Maybe get in touch with NRAS by phone /email. They might know something. You can't be the only RA patient in the area. Best wishes to you.

[EmilieD in reply to priss58]

Dear priss58. Yes, this is the University Hospital of North Durham. It is indeed a bit strange and worrying. Thankfully, I am under the care of a rheumatology consultant, just not at UHND. I had my first appointment with him in Shotley Bridge (about 30 minutes drive from UHND). I haven't received my second appointment yet. I don't know where it will be. But I know that my follow up appointments (blood work every two weeks for the next month or so, as I just started methotrexate) will be at UHND. She told me they don't do the follow up in Shotley Bridge. This is convenient to me but to to people living in Shotley Bridge, I guess.

From the look of the website, I would say that Freeman Hospital in Newcastle seems to have a more specialised RA clinic. But I am already doing a lot of travelling (I live mainly in Durham but work in Nottingham where I spend 3 nights a week), so I thought it was better to reduce the travelling where I could!

I am pretty sure I'm not the only RA patient in County Durham, but I haven't met any of the others. In fact, I've never met anyone who has RA (or at least who I knew had RA)!

Over all I can't complain I guess. I was first referred at the end of October (with pain/stiffness in hands and feet for over a year). Saw a rheumatology physio in early December who saw the need for urgent referral to rheumatology consultant. The referral happened at the end of December and I was given an appointment a month later. So I managed to see a consultant within three months of my first referral. I probaly would have been able to get the first referral earlier, but would probably not have seen a consultant any earlier since my symptoms remain mild until sometime in November. I was just too busy with work and life to push for a referral, and I had gotten used to the symptoms: it was not that much worse than having to wear glasses!

[Bessieboo1 in reply to priss58]

We’re hoping to move to the area towards the end of next year so would be great to know how you all get on. We currently live in Norwich and care is really quite good when I listen to others on here. Susie xx

[priss58 in reply to Bessieboo1]

Hi Susie, why don't we keep in touch on here? I'm not on here all the time but I suppose if I remember your name I could tag you or something if I find out more. I'll be going up soon to check out which area I want to move too(my brother and his wife and kids live there). I'm in Sussex, and the care has been pretty good, though in the last couple of years I've had less blood tests or referrals, and haven't seen a consultant for 2 years. Cut backs, I suppose. Tricia x

[Bessieboo1 in reply to priss58]

That would be great to keep in touch you’ll have to be my secret mole telling me where to go and who to see and more importantly who to avoid!! We are not sure at the moment where we are going to live my best friend has just moved to Cumbria and my brother and family are in Newcastle. We have rented a cottage in Middleton in Teesdale in September to decide how close to Durham we want to be. I’m currently on Benapali having been on envrel for 5 years, I don’t find it as effective and certainly more painful, also have hydroxychloroquine. I’m concerned about the move as I don’t want to mess about with meds etc. Susie x

[priss58 in reply to Bessieboo1]

Haha, OK, I'll keep in touch. I'm hoping to be in Durham City as I don't drive so need to be here transport. I've been on loads of drugs over the years. But since 2009 I've been on Rituximab, which I have every 10 months. It's been good for me but recently I've been having more flares, and my fatigue is really getting worse. However, I still think it's a good drug for me. I used to take methotrexate as well but I stopped as I hate the stuff. Anyway. If I find out anything I will let you know. Good luck. Tricia x

[priss58 in reply to priss58]

Also, I have had a wrist fusion and would like to avoid any more of that kind of thing!

[Bessieboo1 in reply to priss58]

I hated methotrexate as well I felt unwell for 4/7 days. My consultant wasn’t happy that I stopped it but it was interfering with home and work life and I couldn’t tolerate it anymore. Don’t really feel that they have ever totally controlled symptoms. I get really exhausted and have a lot of pain. I’ve had a thumb and partial wrist fusion as well as spinal fusion. I’ve also had elbow and shoulder surgery!! I’ve got a useless left hand and complex regional pain syndrome in left arm/hand!! I’ve ticked the box to follow you so I would be grateful for any info. Best of luck with your move. Susie x🐾

[EmsMac]

I live in Newcastle so am at th Freeman for my treatment.