Rheumy Nurse?

[Colaba]

I am puzzled. This site has many references to apparent support teams. I am delighted if that is general. For myself the only contact with the NHS I have is my GP.

It is alleged that there is a very overdue appointment with a consultant. Maybe I shall be able to elicit information about some kind of local network of support for sufferers of Rheumatoid Arthritis.

The methotrexate seems to keep awful pains at bay, but my mobiity is deteriorating.

This is a repeated moan. I am more puzzled than desperate.

[Runrig01]

I assume your under a rheumatologist, as it would have been them to diagnose you. If you’re not aware of contacts for the nurses, ring the secretary and she will let you know how to get in touch. Unfortunately we have to be proactive these days, so if you’ve gone a while with no review, ring and say you need an appointment, it doesn’t need to be your gp to make that contact. If they don’t hear from you, they assume all is well. The system at my hospital, is you phone and speak to the secretary, who will then get the nurses to call you back,. So far it’s always been the same day, and works well. They either offer advice over the phone or arrange an urgent face to face appointment. I assume your up to date with blood tests despite not seeing them

[Beechwood1]

As per previous post: Hi there Colaba, in the absence of regular contact with RA focussed medical professionals, if you need any advice, the lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck

[MuppetBaby]

Perhaps if you give the name of the hospital you attend, someone may be able to advise you if they attend the same place. Every hospital is different as to what support they provide. There is bound to be someone on here that attends the same hospital as you 😊

[AgedCrone]

Oh Colaba don’t despair ….I think you have encountered this problem before. Your GP is looking after you & giving you the prescriptions for the Rheumy drugs you are taking…but he doesn’t actually prescribe them…your rheumy does that ,& it is only him/her who can add or alter your meds.

If you feel your present drugs aren’t helping you enough…try calling the rheumatology department at your hospital & getting put through to the rheumy nurses…they will be able to decide if you need to see your rheumy consultant soon.

If you don’t contact your rheumy department they will be presuming you are getting on fine, sadly that is how it works these days.

Unfortunately there is no longer the regular contact from rheumatology chasing up patients to check on them…..these days we have to get in contact with them if we feel we need some help.

So do get on the phone & have a chat with one of the rheumy to get some help.

[Colaba in reply to AgedCrone]

I am very sorry. I did not want to arouse a burst of sympathy, simply to note again -as you point out - that the comfortable descriptions of 'teams' of concerned professionals is far from universal. I have no idea with whom to get in touch or that I have any right to do so. My mobility is diminishing and I suppose I can expect worse. I presume my medication is doing all it can. I have spoken to no medical person about RA for more than a year. I have had rapid response to bleeding urine and two scans that show an enormously enlarged prostate that apparently holds no menace.

I have the RA disease and must learn to live, and presumably to die, with it.

I had forsworn writing to this forum of very nice, well-meaning, folk. I have no delusion that anyone else wil be interested unless I fall iller in a sufficiently dramatic way.

I'll try to stop again.

[KittyJ in reply to Colaba]

you should get in touch with your rheumy team at the hospital where you last saw your consultant however long ago that may be. Call the rheumatology clinic and speak to them if you don’t know who your consultant is, they’ll be able to advise you.

As someone else has said, if you name your hospital then there’s bound to be someone here who goes there too and can give you some guidance. Long gone are the days you will be chased to attend an appointment but I’ve found if I need to contact them then they are responsive.

you do have to learn to live with RA to an extent and as it’s incurable you will die with it but there’s lots of meds and help out there, if you need it, to live the best life you can with RA.

[AgedCrone in reply to Colaba]

Colaba….don’t underestimate us here. I urge you to get on the phone to your hospital on Monday morning..,……you are the only one who can do it. We have all been in your shoes…& know how difficult it is to bring yourself to the attention of your rheumy team saying you need a bit of help….so please do make that call.

As I have told you before I am only a year younger than you.. have had this horrid disease for a very long time…& yes it does take a lot of effort to navigate the ups & downs …but get it out of your head you are going to die of it any time soon.

We have all had to make that call at sometime…it is what the NHS rheumy nurses are there for…,.to help people get their meds working to maximum effect. You are not going to fall ill in some dramatic way…. unless you just sit at home & stress needlessly. So make a few notes ..look up the hospital number …write down what you want to say & I’m sure whoever you speak on Monday morning to will sort things for you.

We all look forward to knowing how you get on…..so do let us know. Please get on that phone on Monday morning.

[Stills]

I read your bio where you say you feel you may be depressed. If you accept that possibility then please accept that there are people and places that can help you with depression and RA. You will feel more positive about yourself when you help yourself and more useful to others which will all add up to feeling better about yourself. Please seek help as soon as you can. You’re not alone, you’re not the only one and you must take the first steps towards better days. I give you the strength to do it.

[Otto11]

Hi sorry to hear things are not good right now. Every hospital seems to have a different system in place. Ours has an advice line where you can leave a message but it takes about a week for the nurse to call you back. Gone are the days of ringing nurses direct unfortunately. Please ring your hospital switchboard if you don’t have any direct numbers they can put you through to a secretary or a helpline. If your mobility is reducing then it’s fair & valid that you reach out to them for advice & help. Don’t just sit & wait. We all have the be proactive in our care these days.

[Blodynhaul]

HI Colaba, really sorry to hear of your situation & feeling helpless about things & your RA. What others have said here sound exactly the right things to do. I'd reinforce that phoning the NRAS helpline is a VERY good idea as the people on it are experts specialising in RA & could certainly give you great advice & show you're not alone. GOOD LUCK and plase let us know how you get on X

[Cheesechurch]

I agree with all the advice on here. Get advice from the rhumatrory department. I hope you feel better soon.

[CallMeSunny]

Hello Colaba. I see it’s a few days now since you posted your comments on here. As all the replies noted, this forum cares and is concerned that you are puzzled by the apparent lack of care from the NHS. I wonder, did you discover who to contact (and how) in your rheumatology department at your hospital….or did you perhaps reach out to your GP? If so, I sincerely hope you have been offered a way forward. Like you, I’m also losing my mobility and frankly, finding it quite scary! I’ve managed to sort out some excellent exercises from Versus Arthritis and shown on YouTube videos (no, I don’t have an account or ‘belong’ to YouTube…I just Google it. I’ve also purchased a three wheel foldable walker which helps me move around more easily and I feel safer using it. Best wishes and good luck.