RA flaring, bad experience with hospital. Struggling with waiting to be seen.

[Savannahseger]

I've recently moved to Birmingham and have flared up. I got my GP to refer me to the local rheumatologist which meant transferring my details from where I was registered at Oxford. This took a few weeks, all the while flare is getting worse. When I finally got my letter through, the appointment is not for 4 months, even though the GP put the referral through as urgent. How is this a standard level of care? I am 23 and haven't had a bad flare since I was 17, so I'm finding the standard of care in the adult rheumatology to be shocking when compared to my experience growing up in the children's & adolescent department. This is just adding to anxiety and depression, feeling like I'm just another number stuck in the system. How do people deal with this? When I was at Oxford there was a walk-in flare clinic so if I was really bad I knew I could get immediately seen and treated. Apparently Birmingham, despite being the second largest city in the UK, does not have anything like this.

Furthermore, my blood results showed my inflammatory markers to be normal, despite every joint bulging. Is this normal? Or an inaccurate reading?

I'm struggling with motivating myself day to day to go to work and not think about it because I know it's just a waiting game until I get seen. I could do with a wrist brace while I'm flaring and other support, but I don't know how to get things like that.

If anyone could help me I'd really appreciate it, or else if you've had similar experiences.

[EmilieD]

Dear Savannahseger. I'm so sorry you're in this situation! Have you tried to call the appointments center to get put on the waiting list? They may also be able to get you an appointment to another "nearby" hospital. In Durham I had the option of going to other hospitals in the same trust, but also Newcastle and Sunderland. Regarding splints, I got some from the occupational therapist. I was referred by the rheumatologist. You could certainly try to be referred by your GP. I have also bought some splints online, although in Brigmingham you may be able to find a physical shop. It's a very frustrating situation for you. Knowing you could get help, but lacking access! I hope things get sorted soon for you!

[Savannahseger in reply to EmilieD]

Hi Emilie.

Thank you for your reply! I have a code to go online and check for cancellations, which is a good system and I have been checking that regularly. Also, yesterday my GP said that she would get her secretary to ring the hospital and see if they can get me seen sooner by gp request. I'l find out how that goes at the end of the week hopefully. I know that the reason it is so full of bookings is because so many people need hospital care too, so I feel bad that I'm trying to 'push in' but I feel like it's necessary (knowing how my flares usually go and knowing my disease and body well).

I actually was just looking at splints on Amazon and I think I will order one. They're not too expensive so if it doesn't fit right but is helping a bit, at least it will tie me over until a rheumatologist can get me seen by a physio therapist.

Thank you for your kind words! I know there are little things I can do for myself in the meantime. I think the main shock is adjusting again as it's been so long since I've flared. I keep 'over-doing it' and then paying the price, so I need to learn to take it easy

[Mouseling in reply to Savannahseger]

Just a thought I think you may be ablr to self refer to Occupational health. Here you can self refer to Physiotherapy. I saw a physiothis way the other week and they gave me wrist supports for when I need. Saved some money, plenty of other things you can't get free i.e household aids. The self referral was thtough the hispitol not G.P surgery.

[Savannahseger in reply to Mouseling]

Awesome I will look into that, thank you!

[Mouseling in reply to Savannahseger]

Sorry about spelling! 😁

[AgedCrone in reply to Savannahseger]

I have bought many splints from Amazon Savannah....they are fine & half the price you find the same splint in Boots.

Hope they help.....have you asked for a steroid injection to tide you over? If they suit you they are a God send to get through a flare.

[Savannahseger in reply to AgedCrone]

Mine just arrived... so far so good! How often do you wear yours?

Yes thought about steroids however i want the rheumaotlogist to be able to accurately assess my flare when they see me, which the steroids will disguise. I'll see how long i have to wait and potentially ask for some... i have had a lot over the past few years though.

[AgedCrone in reply to Savannahseger]

Right now I'm in a good place on Biologics & don't need them, but when I flare in my wrists I wear them every night & sometimes during the day.

I find them really helpful as I seem to bend my wrists in when I'm flaring when sleeping & then I can't open my hands , but the splints support my wrists & make things easier.

Hope they work for you.

[Mouseling]

Hi just read your post. This a brilliant community to get support. NRAS have a phone support line you can ring any time to chat. Call them and I hope they may have advice and ideas for you. Also people on here may have some ideas to help you. There are NRAS support groups to go and meet up in different areas. Hopefully there may be a group near you. I don't have experience of having RA so young and then transfering to adult care. Not knowing your general circumstances it sounds like you have had a big change in your life moving to Birmingham. So alot to adjust too.... And if you are having a flare different stresses can add up. Do you already have friends or family in Birmingham for support? Yes it seems to sometimes take along time to get appointments. Which hospital are you now with. Do they have a number to leave message for Rheumy nurses? My hospitol have this and they should get back to me within 24hours. Have you got new G.P you could talk to for support? May be they could chase hospitol. Trying to think of ideas sorry if bombarding you with thoughts.🙂😊 You sound like, you are coping so well it is so tough and when you are young. I was diagnosed much later.... 42yrs so my heart goes out to you... If you ever want to chat more I can give you my email. I am about an hour from Oxford but further from Birmingham. Sending you hugs and smiles 😊☺️

[Savannahseger in reply to Mouseling]

Yes I'm glad i found this group, and I have looked into going to some of the NRAS support groups too. I think I will give them a call this week.

As for calling the nurses at the hospital, I tried to but they have specific hours in the day when they answer, and no answering machine, so I'll make sure I get the timings right when I plan to call and see what they say. In fact I think I'll try to ring today.

I think stress might have contributed, I'm not really sure, things are ok as of recently. Last year was stressful but I was ok then. I'm living with my boyfriend and I do have family not too far away if I need them. My work have been supportive too.

Don't worry, your ideas have been helpful, thank you! It's exactly why I reached out

I always thought growing up with RA made me strong and has taught me a lot, but I sort of was living the past few years as if my RA would never come back, so it has hit me hard now. It's a whole different experience for me too as when I was younger I didn't worry about things like medications affecting pregnancy, but now I'm in my twenties, I'm thinking about the next few years totally differently. So I want to make sure I get this under control soon as possible.

Do you know of any supplements that are useful? I'm vegan so I won't take cod liver oil, but I have flaxseeds every day, Vit d and Vit b-12. I'm trying to drink less alcohol (or avoid it entirely) and I have bought some new velcro shoes haha, but I'd like some recommendations for comfortable but stylish shoes if possible!

Thank you, it's nice to have someone to talk to.

Hugs back

[helixhelix]

Sorry to hear that things are not so brilliant for you. I've heard other people being shocked when they hit 18 and transfer to the adult rheumatology service. So you are not alone in that - not that that helps you! Generally once you get to meet your rheumy you should feel less like a number once you've made a personal connection.

Oxford is only an hour on the train from Birmingham. Have you thought about travelling back to your walk in flare clinic? You have reregistered with a new GP, but since you've yet to see a new rheumy then perhaps you could still be considered to be under your old one and so still eligible?

And do watch your calcium intake. V important at your age and with RA, so make sure you get enough. And perhaps looks at fortified foods to ensure you get the omega 3 as flax seeds are good, but may not be enough? Apart from that if you have a varied diet then you should be fine, just don't eat the same stuff all the time.

Shoes I can't help with as all the comfortable ones in leather or non-leather seem to be ugly!

[Savannahseger]

It's ok thank you. I guess I could try to contact Oxford and see what they say, I just didn't think they would accept me as I'm not technically registered there anymore (only as of a few weeks though).

I will look into calcium. I think the plant milks I drink are fortified with it and some of the tofu products have high calcium too, as well as nuts and seeds which I have a lot of. I'll look into other forms of omega-3 too as I might be lacking.

I was thinking my flare was triggered by me having a higher sugar intake than normal and eating more takeaways etc rather than wholefoods. I'm trying to eat as healthy as possible but when I'm flaring all I want is comfort food.... ahh I know.

The Teva sandals are good because they're adjustable and I don't think they're too ugly either - some are quite funky. I tried Burkenstocks but they didn't fit right. And my Nike's are my best friend at the moment!

[NicolaP]

Which hospital in Birmingham have you been referred to? I'm under the Queen Elizabeth (University Hospital Birmingham). I had to rearrange a routine consultant's appointment at short notice earlier this year and it was pushed back 3 months. Not unusual, although if you are a patient with them in an emergency its possible to get to see at least one of the nurses at short notice. My care is jointly with my GP Surgery as they have a Rheumy Specialist GP so I normally contact them first if I'm in trouble but can go through to the Rheumy Department Helpline if necessary. I know when I was first referred in 2010 I had to wait over 3 months and that was an "urgent" referral so unfortunately its not unusual. I think often the larger the area, the longer the wait unfortunately because of the numbers of people. Depending on where you are in Birmingham there may or not be an NRAS Group in the area. There was one in south west Birmingham for a time a few years back but was closed down due to lack of attendance but some of the problem was the time of the meetings, any one working full time couldn't make them very easily.

[Savannahseger in reply to NicolaP]

Yes it was the QE I’ve been referred to. It’s good to know that it’s not unusual. They probably think I’m a nightmare patient pushing them to see me sooner when so many people are in the same boat as me :/

My brain just can’t understand it... the NHS must spend so much money on Surgury and treatment for damaged joints, but if they spent more money on consultant appointments people would be seen before the damage got so bad to need surgery? It’s a troubled system I know and I understand their struggles because my mum is a nurse.

I’m going to keep ringing the rheum nurses and see if they have any advice. I saw that there is a NRAS group in Solihull which isn’t too far to get to. Do you find them beneficial to go to?

[NicolaP in reply to Savannahseger]

I've never actually been to an NRAS group because when they were held in, I think it was, Kings Heath I was working full time and it was impossible to get to without taking time off work. At the time I was contracting so if I didn't work, I didn't get paid and I'm afraid that's one of the reasons I personally never attended. Since then I've not bothered looking at any others in the area, partly at the time when I could possibly have done with the support I wasn't able to travel very far because of the affect of the RA. Now my RA is fairly under control but I'm suffering from issues with joint damage and badly weakened muscles. I've had some physio at the Royal Orthopaedic Hospital but its a long process and sometimes I don't feel that what they suggest seems to be right for the issue. For now I muddle on but having changed to biologics in September 2015, things have improved greatly and since finding I was also deficient in Vitamin D in December my inflammation markers now reflect the level of disease activity rather than what it wasn't. Thankfully got to this stage without being changed to another biologic as the issue with the markers wouldn't have resolved itself by that change. Extreme Vitamin D deficiency was causing the raised markers and not so much the inflammation from the RA. I had always suspected something other than RA was causing the issue but my concerns weren't really addressed.

I would get your referring GP Surgery to try and push for an earlier appointment if things are very bad, it can't do any harm and may help get an earlier appointment. I'm lucky being Seropositive as inflammation markers not reflecting the level of disease activity has never been the issue, but on the downside other things can affect the marker levels and have the opposite issue as has happened with the vitamin D deficiency.

One thing with the QE I would advise is that if you have anything other than a 9-9.30am appointment, allow a lot of extra time for finding a car parking space if you are travelling by car. Its an absolute nightmare to park there. That said, the early appointments present there own issues with traffic. I only live about 6-7 miles from the hospital yet it can take me 45 minutes to get there in the rush hour but 20 outside of it. The joys of living and travelling in Birmingham! Hope it sorts itself out soon for you.

[Savannahseger in reply to NicolaP]

Oh I understand, that will make them hard for me to attend too as I work full time.

Was the Vitamin D problem skewing your disease activity blood test results then?

I hope your physio starts to make a difference even though I know it doesn't feel like a solution. Keep going though, you will get there. Maybe they want to strengthen around the damaged joints for less impact.

Thank you for the advise on the hospital! I'm hoping to get the train there but if I'm really struggling I'll need a lift so will bare the parking in mind.

Thank you, I hope you get the relief you need too! Take care.

[juliejswift]

Hi there. Sorry to hear about your recent flare. My daughter was diagnosed at 12 and the things I know that help (I’ve kept a diary on her for years) are eating clean and reducing stress. I try to do her daily fruit and veg juices and when we don’t give her a healthy diet and she has stress (GCSE s or moving school as an example) then she will get a flare.

We too had to wait 7 agonising months to be seen as she had gone into remission and was out of the system. It took 2 years to diagnose as doc kept telling us it was growing pains! I really sympathise with you and we felt exactly the same. Whilst you wait try to look after yourself. Yoga? Walking and a good diet. The diet thing is key to it I believe. Good luck and big hugs from Kent!

[Savannahseger]

Thank you. You sound like you’re being a great mum going above the standard medical treatment to keep her well. I’ve always been a firm believer in doing all you can and looking after my diet and doing exercise is important to me. Growing up I too flared every single time before an exam, right up until university. I also flared terribly when I had my first teenage heart break haha, I laugh now but it just shows the hormones of a young girl can play havoc on a body with an autoimmune disease.

Going vegan has made a massive difference I think as my flare isn’t as bad as it used to be, but I think I’m flaring because I’ve not be a clean or healthy vegan recently, eating lots of sugary things, crisps, vegan chocolate and fake processed meats etc, as well as alcohol. So I’m going to try to be strict and see if that makes a difference.

Thanks for your support and I hope your daughter is doing well! Take care.

[Uga35570]

So sorry for you I am afraid I have no solution except a got a wrist brace from Amazon hope that helps a bit.

[Savannahseger in reply to Uga35570]

Thank you for your support... I actually have a wrist brace arriving today and it's sad how excited I am for it haha.