West Sussex rheumatology

[Jeremycfc]

Hi there everyone, just wondering if any of you live in West Sussex Worthing area's and are finding it impossible to get through to the RA nurse's let get alone having a face to face with a consultant, I have managed to find out that there should be five consultant's in West Sussex but we only have two and one of those is cutting back,feeling a little abandoned,KBO

[Oshgosh]

I feel for you.

I used to have some form of contact with rheumatology 3 monthly,since Covid this has decreased.I’ve not had contact with rheumatology for 13 months.nor any response to messages I’ve left.

It seems that rheumatology is under pressure across the UK.

My contact with the interstitial lung disease department has continued as usual.

Sorry I don’t know what to suggest.

[Jeremycfc in reply to Oshgosh]

Hi thanks for your reply, your right they seem to be under enormous pressure I ended up having to go private too see my consultant, don't know what the answer is, keep smiling 😊

[Oshgosh in reply to Jeremycfc]

I did have an appointment in September at a different hospital with some one I didn’t know.

As it on the day of the Queen’s funeral,it was cancelled. I had to ring to find it was definitely cancelled.

Then at 3 pm the day before,I was rung by a confused sounding lady. *do you know that your appointment is cancelled?* yes,she said they would contact me to reschedule.

I’ve heard nothing so far, as my rheumatoid athritis isn’t causing problems at the moment,I’ve left it.

At present my lung disease is causing more problems than RA, I havent chased it.

I get contacted 3 monthly and blood tests and lung tests continue,so that’s ok.

Sorry to ramble.

I do think that it’s not ideal that you have to pay to see your consultant.

Take care.

[jigsawpuzzler]

I live in the Worthing area and I feel for you too.

I haven't tried to phone the helpline for some time, but I know it's almost possible to speak to somebody mainly because there are fewer rheumatology nurses than there should be as well as fewer consultants.

And my consultant told me at one stage that they've had to take on lots of patients from the Brighton area, which has made things even worse.

I saw a nurse back in October and I've got an appointment to see my consultant in April, but I have been warned that this might be cancelled because of lack of staff.

If you're really desperate for some help, would it be worth getting in touch with PALS as I did once? Or having a word with your GP? I had a RA review with a nurse at my doctors recently and she gave me the impression that she could get in touch with rheumatology for me if I'm really desperate.

[Jeremycfc]

Hi thanks for your reply, things are looking pretty bad at the moment here, just hope that the situation can get better,keep well

[OldLadyM]

I live in West Sussex and have contacted the Rheumatology dept twice over the past year; both times a nurse has responded via tel within days. I haven't requested a formal review or f2f appointment, they were simple questions.

All my paperwork is headed "Sussex Community" and I've used the email given in the contact details. If your medical documents use the same heading then perhaps an email might work for you too?

Good luck!

[Jeremycfc in reply to OldLadyM]

Thank you, I'll give it a go

[Stowe]

hmmm I think they all stretched, as i'm with York hospital (who are good) but the last call i had was a nurse telephone chat in October and was told I was due to have a phone call in March but haven't hard anything, I have left a message to confirm if there is a call in March as I do need some advice from them. I hope they come back to you soon, I think alot of us are in the same boat.

[Tottie10]

I'm under Haywards Heath and while the help line doesn't seem to be manned, messages have been picked up and care seems to be consistently good. Good luck.

[Silverpixie]

I'm under Haywards Heath too and have found calls to the helpline are always returned and the care has been good.

[tinlizzie]

Hello Jeremy, I'm in the same area as you and finding the same. Until last June I saw my consultant every four/five months. He has always been excellent, even coming down to the ward when I broke my hip. However my follow up appointment for December was cancelled and rebooked for March which has now also been cancelled but no further appointment sent (cancelled via NHS app but no letter sent). On checking with appointments number, they confirmed cancellation and said 'we don't know what is going on in Rheumatology'. Think it's shortage of staff. Have you tried contacting your consultants secretary? They are usually very helplful. Good luck.

[Jeremycfc in reply to tinlizzie]

Hi Lizzie thanks for your reply, it's not good is it, my consultant has given me his secretary's email address so I can get in touch if necessary, just hope things will improve, keep well and all the best 👍

[kimmypoos]

I moved to West Sussex just over three years ago, and tried to transfer my care - had one face to face in Crawley just before the pandemic with a great young rheumatologist but was told he was leaving to go elsewhere and I wouldn't see him again. Since then nothing, no follow up or ongoing appointments, and so I decided it was safer to maintain care with my rheumatologist in London (with his and my GPs agreement) who I've been under since diagnosis. It hasn't been a problem as everything has been over the phone until recently, but it's not ideal having to travel to Paddington now face to face has been reinstated. I would much prefer a local option, but just have no confidence I'll be looked after. I believe there's a general shortage of rheumatologists, guess it just isn't a sexy specialism for the young doctors coming through the system, but it's extremely worrying if it means there isn't a viable service in some areas of the country.

[Cirrostratus in reply to kimmypoos]

I wonder if that young rheumy was the same one I was lucky enough to see a couple of years ago. In my nearly 50 years of RA he was the nicest, most patient and thoughtful one of all. Gutted when I found out he was moving to another area!

[Nuttyshirlz]

I’m under york hospital had an X-ray jan 21 going to discuss next appointment lol I rang them last year in the feb was giving appointment sept that was cancelled then again nov that was also cancelled I’m told I’m next on list and still waiting In before covid I saw them every six months

[Hidden]

I live in West Sussex.

I attend a combined clinic in Southlands with the rheumatologist and dermatologist. My appointments were originally every three months then stretched out to four months. My appointment in January 23 (first day back after Christmas) was cancelled but I turned up anyway on the off-chance that one of the consultants was there. It was madness, nobody knew what was going on. I was eventually offered another appointment in August but managed to get this bought forward to March 23 - I am hoping it will still go ahead. I am still waiting for results of x-rays taken in September 22 and a discussion of antibody results from October 22. Phoning the rheumatology helpline is a wasted exercise - everything goes straight into voicemail and very rarely is there a return call. Getting a prescription and blood test forms is hard work, I'm told they have been issued but when they don't arrive and I leave another message I'm told they haven't been issued so I wait another week and hope they've been signed off the second time round. Getting through to the rheumatology nurses is positively Kafkaesque. Again the call automatically goes into voicemail; the message has varied but generally it quotes a day each week and a time (normally one morning only) but messages left outside this time are not answered. If you're lucky there might still be space left on the voicemail for your message but generally it's full. I have raised this but nothing is ever done. The situation in respiratory is no better.

As a general rule it's normally easier to get through at St Richard's if you can get your treatment transferred there.

There's no doubt the service has deteriorated. When WSHFT took on BSUH the re-organisation took some time to bed in and affected performance. It's not long ago that WSHFT was the No.1 hospital trust in the country and their CEO the top CEO in the country two years in a row but the pressures are far greater now and all the hospitals are feeling the pinch.

Let's hope that things improve in the future.

Best wishes

[Jeremycfc]

There's always hope 😄