no teams to help us

[Parker16-]

I am sad that Northamptonshire has changed their RA support. You talk about these lovely team that is there to support us but in truth we are on our own. If your markers is ok they now hand you to a doctors who do t have people with knowledge to give you support. As in your very informative videos RA is more complicated. I feel I am given drugs and away you go. It’s a lonely place as we do try not to let it get the better of us so suffer in silence. RA has many other medical complications but as we know doctors are too busy to be working about that. I thought this was the end of RA support in our area. Sorry to moan just my opinion. Pam x

[KittyJ]

It’s been that way here quite a long time, if you’re on meds that are controlling your RA then there really is no need to keep seeing you every few months etc. as long as any bloods needed are being done then they will pick up any problems but if you are suffering then I have found that it’s not difficult to get either seen or a phone call to discuss what’s going on. Have you contacted them to let them know ? Please don’t suffer in silence as in the long term that can cause more problems.

Sadly, the way the NHS is at the moment, things aren’t going to improve quickly so we have to chase up or persist with getting help when we need it. (My hospital isn’t Northampton this is just my experience )

[Boxerlady]

Sorry to hear that. I've still got an active team who are easily contactable. I'm on sub-cut Methotrexate and my health authority doesn't permit shared care for that so prescribing can't be passed on to the GP but I get regular f2f appointments and the department is always busy with several rheumatologists working so it doesn't feel like it's being wound down in any way.

If you're not happy, you need to speak to them - maybe it's worth chatting to the NRAS helpline to get their take on it? 🤔

[Runrig01]

In my area, they introduced a company called Connect Health to take over some rheumatology patients. You still remain under the care of your consultant, but you see members of this company, often closer to home. They can get in touch with your specialist if they have any concerns. We had several of our rheumatology nurses left to work with them.

If your on biologics you remain under the hospital and consultant, but that could change. It actually works well, as it frees up appointments from patients who are stable and have no concerns, which means that when you need seeing, you can get an appointment quickly, and that they can see patients referred for assessment sooner. They did away with the nurses helpline, which concerned me. However, you now phobe the secretary, who will inform the nurses and you get a call back same day. Before you left a message and could wait days.

Rheumatology is under pressure, because unlike surgeons who discharge once you’ve recovered, your on a rheumatologists list for life. So their lists keep getting larger, as you tend to only drop off the list when you die. So something has to be done to manage it.

If you are struggling in between appointments, contact them. If they don’t hear from you they assume you’re doing ok. They will gladly slot you in if needed.

[Fruitandnutcase]

Sadly that’s how it is for me - well how it always has been. They don’t bother me and I don’t bother them.

I think it is a sign of the times and I just assume ‘they’ think my condition isn’t all that bad and if I have a problem I can contact them. I did that a few years ago and I was slotted in for an appointment a few months later.

Don’t know why but I’ve never been told I have a rheumatology nurse, I keep a check on my eyes, I pay for my own annual OCT eye scans because I take hydroxychloroquine and that’s about it for me. If I feel particularly creaky I top up with a couple of paracetamol ( a suggestion made years ago by one of the many rheumys I have seen over the years) I should add that I attend what is considered to be a world class teaching hospital 🤔

[Paula-C]

I'm seen just once a year now and I'm okay with that, I'm in remission. If I do need to ask about anything I email the specialist nurses and normally get a reply within the hour, even had replies inside a few minutes if I email first thing in the morning. Once diagnosed you don't get or should I say get discharged from the hospital with it being such a complexed condition. Every week their patient load will be increasing and the only way they lose patients is if we move out of the area or pop our clogs. It must be very difficult for them to see everyone, plus there's a National shortage of rheumatologist .

[J1707-]

well I feel things will get worse.

I was diagnosed nearly 8 years ago . the helpline was answered and answered immediately. Expert nurses on hand everyday could see rheumatologist at short notice and everything explained and never felt left alone.

Saw my Rheumatologist last July needed to see him or my Biologics nurse asap as having major problems after infusion in September. Rang helpline answered by someone who told me my Rheumatologist had left as had my Biologic nurse . Asked to speak to a nurse to be told a nurse would ring me back. 3 days later nurse rang from another hospital. Told cut backs meant reduction in staff and 3 hospitals sharing rheumatology. Told needed to see a rheumatologist so booked in with a locum in November ( he was bloody good) told needed to go onto new drug and a nurse would be in touch after scans. Scans in January heard nothing. Rang in February no appointment made fallen through the cracks could have a telephone consultation with a nurse at another hospital 21st March . She was rude didn’t listen questioned everything I said kept saying needed another infusion. A game of ping pong ensued me saying side effects caused problems including liver damage her saying give it another go . No results on computer saying liver problems or results of scan . 1 hour later new drug will prescribed if my liver and TB tests ok . I will have to book themself as as she couldn’t do it nor could she prescribe my mtx . I would have to ring secretaries as helpline no longer exists.

I worry what happens next. Gone are the days where we were looked after. Used to be sent various clinic eg podiatrist,handclinic, and physio. If we can’t be seen how can we be referred.

I’m so angry . Sorry about the long reply

[Evie3]

Since Covid it has changed. I never see Consultant unless I pay private. All done by ringing a helpline to speak to an RA nurse and waiting for a call back. 😓

[3LittleBirds2 in reply to Evie3]

I'm the same, I haven't seen my Consultant for an appointment since 2021, but saw him quickly when i called in with a severe flare and they told me to call into the Hospital in Nov 22.

[MarmiteLover1 in reply to Evie3]

Covid is no reason in itself for things to have changed. It was a pandemic; the worst of it has long passed. I sometimes suspect it is still used as an excuse for various things, though of course one can never prove it.

[sallyeb]

I have been under Northampton for about 20 years and as I am in remission I don’t see this as too big a problem . I have always had help from the rheumatology nurses when I have called. However on a more positive note I have recently had a problem and been seen in the lupus clinic with two consultants and I can only say my care has been great.

[joycen60]

I also live in Northampton and don't see it as a problem. I am stable hence the reason for putting me on this pathway. Even the phone appointments that I have had for the past 4 years have really not been necessary. I was told that if things change and I feel that I need for an appointment that I will be given one within 2 weeks. A win for both parties

[Green230461]

so sorry to read this. Take care🌈

[WilfDog]

Unfortunately, that's the way the NHS is now. I always had regular appointments, but for the first time ever, I haven't had a check-up appointment vome through. I am fine with it as it frees up appointments for others. However, I need to speak to my consultant now, so I will be ringing the secretary to see where I am on the list. I know PIFU (patient initiated appointments) are being introduced now, so please get in touch with the secretary if you need to see your consultant. It's important you are seen when needed.. Good luck x