anyone in south wales? at neville hall hospital, abergavenny?

[dillie]

hi there, i am a patient at neville hall, abergavenny. i am really struggling with the consultants there ( i won't go into details here, too long!), is anyone else a patient there? i'd love to hear some advice on what patients think of the department there! also, are there any support groups in this area?

[Robin_Hood]

Hi Dillie,

I am in South Wales, but attend the Royal Glamorgan.

The only NRAS Support Group at present in South Wales is in Swansea, but there are plans in the pipeline to start one in the Caerphilly Area, so slightly closer to the South East Region.

Have you had a look at the NRAS website or spoken to the helpline? They maybe able to help?

More than happy to offer some advice/support if you want some to sound off at, PM me

[dillie in reply to Robin_Hood]

hello! thank you so much for your reply! i will definitely be interested in the support group, i'd be grateful if you hear of anything that you would keep me posted on anything that comes up in south wales - i think a group is great idea! i've had a reply from a patient at NH, so i will message her about consultants etc but thank you so much for the offer for PM - its heartening to know there are people out there who care!!

[Kim-NRAS NRAS]

Hi Dillie

Robin_Hood is right - plans are underway to launch a new group based in Caerphilly, we have high hopes for this to happen before 2015. We will update HU when we have confirmed details.

This is a bit further afield, but if you wanted a one-off travel to Gloucester we are hosting a information evening there on 18th June, it doesn't matter that you are not assocaited with the hospital there.

If you want anymore info, just let me know.

Kind regards

Kim

[dillie in reply to Kim-NRAS]

hi kim! thanks for your message - the group sounds like a great idea - count me in when it starts! i don't think i could manage a trip to gloucester right now, but thank you for the invite. if anything is arranged for cardiff/caerphilly/merthyr/abergavenny/chepstow, i'd love to come!!! thanks again - dillie

[Kim-NRAS NRAS in reply to dillie]

No worries Dillie. We hope to announce details around August time. Don't hesitate to drop me an email at [e-mail] if you have any queries.

Thanks

Kim.

[oldtimer]

Yes, I'm a patient at Nevill Hall. I find I need to be assertive.There isn't a local support group - I don't have time to organise one as I work for EPP as a tutor and that takes up my spare time. I would love someone else to organise one!

I used to appreciate the good Rheumatology Help Line but following cuts to the service it has become an unhelpful line, only now available Mon- Thurs a.m. to leave a message, wait in all afternoon, no reply x3 occasions now, but no idea if they have replied later as no message has been left on my "always on" answerphone.

I find seeing the registrar useless as he is not prepared to make any changes to management, but seeing the specialist nurse has always been excellent.

I take my own version of my medical record with me as frequently the information needed by the consultant (I see Dr Linton) is not easily accessible in their handwritten and voluminous notes. Before I leave, I always check with my list that my questions have been answered and I repeat back to the doctor/nurse what I have understood to have been any changes to my management and jot them down. I ignore any impatience as this is important for me.

I am pro-active about my review appointments - I ring up when they are due as otherwise it can be several additional weeks before I am seen, and ringing the appointments line makes the number of weeks it is late slightly less! If I need to be seen urgently I used to do it through the help line, but now that isn't answered, I ask my GP to email the consultant.

As you can see I have developed coping mechanisms.

Please write about any problems you have had. There are lots of people on here who have had "communication" problems with health professionals. and can give advice. Don't just put up with poor service.

[dillie]

oh my! this is music to my ears, although i'm sad to read that someone else has had problems at NH. yes, it seems like you have to be super organised, and like you, i have found the nurses very helpful but the consultants are dreadful. i have seen the other two (i.e not doctor linton) and both have been really tough going. it seems like there have been massive cut backs ( i hear the royal gwent closed down their RA dept and transferred it to NH) and at brecon, where i was first diagnosed, there has not been a RA nurse there for quite some time, the consultant who i saw there was so stressed and had very little time. i get quite stressed about the helpline and when and if they will reply - am still having the fortnightly blood tests so need to stay in touch with them still. and as for the appts line- if i hadn't chased them, my diagnosis would have been much later! its terrible! would it be ok to message you privately? i'm at [e-mail]- i'll understand that if it is not ok with you, that's fine. i'm trying to decide whether to kick up a fuss and transfer to doctor linton so any advice would be welcome! dillie

[Titchyj]

Hi Dillie, I too live in South Wales and attend Nevill Hall under Dr Linton. I first saw Dr. El Gabby, who is no longer at NH, he did give me an injection in my knee which enabled me to ditch the crutches. As for the help line they are only able to take messages on a Monday and Thursday until 1pm, this is due to how busy the department has become apparently. I have had good response times from them so far, but if they have to contact Dr Linton for advice on meds this does take a few days. I recently had an appointment with him at our local hospital in Ebbw Vale, which is much more convenient for me. I have now been put on Sulphasalazine as suffered bad side effects on MTX. I still get the diarrhoea occasionally with these and nausea, but not every day. I have only been taking these for 5 weeks so early days yet. My bloods are ok so have sero negative inflammatory arthritis mainly hands, knees and feet. Dr Linton also thinks my Fibromyalgia is not being controlled at present, so have upped my Pregabalin to see if this helps, nothing so far. I cannot take strong pain meds so have to stick with my 8 a day paracetamol. Due to other medical problems I am unable to take NSAIDs. Ask Rheumy nurses for a referral to occupational therapy, if you already haven't, I go to Pontypool County Hospital and find them very helpful.

Catch 22 situation at the moment. Not sure the Sulphasalazine is doing any good and still suffering some side effects. Will be seeing consultant in 3 months and go from there. Would be interested to see where and when the support group gets up and running in the Caerphilly area.

Feel free to PM me if you wish.

Jan