NRAS
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Whiskers64

How many RA sufferers are in the same boat.

The last time I saw my Rheumy was April 2017 a 6month appointment for October was cancelled remade for January 2018 just received a letter from appointments now been put back till middle of February. I just hope this one is not moved again. I know there's a problem with the NHS but that does not help the pains in my hands & Feet my medication has not been reviewed or adjusted now for nearly 10 months. When will the NHS ever get back to normal?

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Feel for you x we wait on these apt’s for reassurance and meds x NHS is so scary it’s going downhill fast x when you have a chronic disease we need our Rheumy's. I can see it all going private and god help us then x lots of love to you xxx

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Hi a do feel for you should not be happening.surely you will get January now.i been discharged 6 times had enough.i seen 1 letter and queried it and told and think down the lines there is going to be lots of discharges and left to doctors and this shared responsibility they are pushing into doc surgery for long term patients .Hope not .Hope your January app goes ok

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Thanks but the January appointment already put back till February so who knows if that will change again.

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Hope it goes ok in feb

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PALS can help ...also I have found asking to speak to supervisor of appointments service can also help or emailing rhumatology nurse. Sadly I find that I have to feel well to be assertive..good luck it is worth perservering.

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You are having a bad time with your appointments. My experience of the NHS is much better. I see three different consultants - I’ve seen the same RA man every six months since 2004 and the biggest change in my appointments has been two weeks. I have seen lung consultants every six months since 2012 with no changes. The third dr is at another hospital and I’ve been going there for two years. Appointments have been on time. It seems like a bit of a post code lottery.

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My region is the same. I went a year without review after a med change - increasing problems. It took a lot of foot stamping and calls/letters/GP visits to get seen. Too few (2) rheumatologists in my entire region. Keep. Pushing and good luck.

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I am over in West Australia and I have been having trouble with my feet for months.... the earliest they could get me in is Feb 18 and that was back in Nov 17. It is frustrating I know. RA is not a disease that can be put on hold.... and yet we are!

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I use to see her every 3 months but she just changed it to 3 months blood work only then 6 months to see her. I don't mind if I have a problem and they will take me in if needed. So far that has been the case. There isn't a lot of Rheumatologist near me. There are only two last time I checked. Hope your feeling better.

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I am just being monitored yearly by my rheumy. However when I called to change my yearly appointment in 2017 the earliest they could give me was to wait for another year!!

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I’ve had the same problem with my occupational therapist and only seen my specialist once in 6 months. You should however be able to see a rheumatology nurse specialist more often. Or at least speak to them.

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If you call them maybe there would be a cancellation. Hope you get to see them soon. Seems those who oester get seen sooner. Its very hard to do though. Good luck

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I’m in the US and if I don’t go for an appointment with my rheumatologist every 2-3 months, they cut off my meds.

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If that was the case here in the UK I would have lost my Meds back in 2016. It's not a case of me not going it's having appointments cancelled by the NHS which is out of my control.

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When that happened to me it's been the central appointments who make and rearrange the appointment so I called my rheumatology nurse told her I had a problem and she found me an appointment. As I'm on 6 monthly biological infusions have to be seen regularly to assess when to give next one. The central booking don't understand that when they put these appointments back 😐

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My appointments are forever being cancelled and rescheduled. I’m supposed to go every three months to the hospital but I end up going once a year! I do most of my check ups at my doctors surgery now and get them to refer if needed. Not good when filling in an application for PIP as one of the questions is ‘when was your last hospital appointment?’ And they ask at interview when your last appointment was and how often you have to attend the hospital with your condition. Once a year dose nt quite cut it, does it?

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Hi Whiskers64

I’m in the same boat

My last appointment was January 2017

next one was for May at that one I was given one for me October 2017 this was cancelled another was given for November this was cancelled another given for January 2018 this was cancelled and another given for July 2018 that will have been eighteen months since I last saw my Rhumy I’ve been in agony my elbows hips eyes in such a state but no help from my team

So I really feel for you sweetie

xxxxx

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I sympathise & feel for you too. I hope that things improve for us both in the near future. Copping with continual pain is so depressing. Xx

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Thank you sweetie

I think the NHS is on a real downward spiral it’s so frightening xxxx

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Do you have an emergency number? I can ring at anytime and I can go in within a Fred for a Depo if I’m struggling. You can also then discuss a few things or get your appt brought forward. Go to GP if not and discuss meds. I often go onto high dose prednisolone for 6 days which really helps. Don’t just suffer and watch the calendar....good luck!

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Hi a useful tip. sometimes works not always if you have time .you can keep phoneing and ask if any cancellations might be lucky .if anyone cannot make appointments on a day if your available .my rumatologist receptionst told me to phone appointments and ask .just an idea as yous are struggling and been a while now

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