My Rhuemy won't see me.. ???

[janeway24]

2yrs ago I wrote to my rhuemy via his secretary because I was so frustrated that nothing seemed to be helping with my symptoms from the Lupus, rheumatoid arthritis etc. I told him I felt I was wasting his time and that nothing he had done so far had suppressed any of my painful , sickly symptoms and flares. That was the last I saw of him, I didn't receive my regular 3mnth appointment.

Unfortunately for me things have gone from bad to worse. 3mnths later I went to see my GP and asked him could he refer me back to my rheumy as I was in so much pain,I was told I have to phone myself as I was still on the rhuemy's books. I did so and waited, Nothing .I phoned again and was told as 6mnths had passed I was no longer on my rheumy's books and had to be re-refereed by a GP. Went back to my GP he wrote to them ,waited Nothing. My GP retired and so I spoke to my new GP who was awesome and knew all about Lupus he was so sympathetic, He phoned the hospital and referred me right there in front of me, I waited. Nothing..I was sad to hear that my new GP had left the practice and gone to Canada, so sad he was brilliant,

The GP who took over the practice 6mnths previous) is a lady who has no sympathy or personality what so ever,she never looks at you when your in the surgery just stares at her computer, and says things like its something you just have to live with it. Reluctantly I went to see her (as there was no other GP there) and asked if she would refer me to my rheumy, again I waited and still nothing. I am in so much pain now and can't walk without sticks, I can't do my beloved garden, or decorate as I did years ago, I can just about get from my bed to the bathroom,hanging on to what ever is in my room to grab on to.When I do go out I have to have some one with me as I have had a number of bad falls because of the pain in my feet and legs. To top it all ( as if that wasn't enough) I now have heart and lung problems , and am on heart tablets and extra strength inhalers as I have so much trouble just breathing as well as numerous other pills and creams. I really need help but I feel there is no one else to turn to, I feel my rheumy is punishing me for perhaps questioning his treatment of me at the time. I am so depressed and in excruciating pain, I don't know who to turn to now.

I live alone 24/7 . and my family are away from me and have family of there own, so don't want to trouble them.

I'm sorry to go on, I know we are all suffering here, but can any one please, please help me or advise me what to do now.

Thank you for taking time to read my message. Love to you all Trish xx

[pattismith]

I would find another Gp as the one you are registered with has let you down on numerous occasions. Don't take no for an answer you need to be seen by a consultant asap. I would give PALS a call and tell them how badly you have been treated and for how long and all the times you have asked for help. It is disgusting the way you have been treated, comes to something when we have to demand treatment. Hoping you get the care you need.

[kittykat68]

sometime schanging your gp doesnt help i changed mine 3 times in a year it just puts you back, i emailed my rheumy once a week and i also emailed pals once a week AND the director of my local hospital, it took me 3 months but i got there plz persivere as we all know its your health and not the drs they are so unaware of our daily struggle keep on trish plz dont give up xx

[field]

I am very sorry you are going through this. It seems to me like your rheumy and gp are not taking their duty of care towards you as a patient very seriously and as a result you are suffering. In view of the fact that lupus can become serious very quickly, It is very important you get help as soon as pos. Every doctor's surgery has a practice manager, who oversees the overall running of the surgery and has a duty to insure best patient care is being provided. If you have issues with the gp or the way you are being treated at the surgery you need to talk to the practice manager and let her know the difficulties you have been having. Every time I have an issue with my surgery I ask to talk to the practice manager, this usually gets me what I need.

Hope you feel better soon.

[Lg1968]

I think that in this case the GP has let you down so frequently that you need to find another than is understanding, supportive and will fight your corner. As Pattismith said you should also contact the hospital PALS dept and get them to take up your referral request for a new rheumi. Good luck. I hope you get the support and help you need. Feel better soon

[Purpletop]

I would just write a letter (not email) to the CEO of your hospital NHS Trust and set out the facts succinctly on one page, ending with how you have tried all avenues before reaching out to him/her but to your dismay nothing you do seems to get you anywhere. Can he please let you know what he suggests you do - that kind of thing.

The reason for writing a letter is multi fold - it is a record of your efforts in case you ever bring a claim against the trust and the CEO office knows that and it is the kind of document that is easily picked up as a story by the local press (and with the latest issues NHS has in the press, I doubt the CEO will want to have to deal with).

Even if he/she only responds by saying that things are being investigated, you can then take that letter to the hospital, make your way to the rheumatology department and ask the receptionist where your appointment is given that the CEO is dealing with it. Dealing face to face with someone in obvious pain waving a letter from the CEO is not easy and most people want an easy life, so it is likely that they will do something about it.

As for your GP, make another appointment and ask her why isn't she referring to a rheumatologist when it is obvious that you are in pain and her predecessors have already gone that route. I'm not suggesting to be rude, or raise your voice but you do need to be a bit firm if you are to get somewhere. If she still refuses to refer you, ask her to put it in writing the reasons for it so you can get a second opinion.

If you don't get anywhere with anyone, try the Citizens Advice Bureau - they may be able to write some letters on your behalf and letters from solicitors are never good news (unless they tell you that you've inherited :)) so hopefully that will get you some action.

Good luck.

[LULU85]

hi hun

Sorry I cant offer any advice but just wanted to say your not alone. I was supposed to be seen by the Rhumey at the end of May. Im in the middle of a flare and the doctor wrote at the beginning of June for an urgent appointment and I still havent heard anything. A rhumey nurse rang me and said my usual rhuemy nurse will ring me this week and decide if I need to be seen...she doesnt think I have Lupus so I have a feeling she will think I shouldnt be seen so then im left in limbo suffering. When I see the GP they say mention it to the Rhumey and if ring Rhuemy helpline they say see your gp!

Its frustrating and very scary as you feel very alone.

Hope you manage to get somewhere

xxx

[twist1]

Unbelievable!!!! It makes me so mad when us lupies get treated this way I have been fortunate to have an excellent gp but I can't imagine how I would have got through this on my own.

Desperate times call for disparate measures. I like the writing CEO suggested from purple top inspired. Maybe you should do that get your family involved for a day, get them to wheel you in on a wheelchair to the main hospital reception while waving placards which say something like unfair to patients, waiting lists too long something like that they hate publicity. :-).

Or if that is too extreme, I can tell you something that worked for my mum, she had been feeling ill for ages and went to see the doctor and ended up fainting. It turned out they hadn't been monitoring her and she was being poisoned by digoxin !!! And if she hadn't have fainted she might have not been able to be corrected as there would have been too much damage. Sobering thought but also a reality for us lupies.

She said it was the fastest she had ever seem them react, bless they obviously need visual aids sometime

Also I don't know if you can get to London but you could get referred to st.thomas's or even try and see dr Hughes private clinic I think it's somewhere in London bridge. If you get confirmation from him you have lupus they are bound to listen!!!

Hope things get better for you! If not we could always try flash mobbing the place ooh actually I quite like that idea lol let me know

[tintin49]

I was treated quite badly by my gp and rheumy I think you have to contact PALS patient and liason and make a formal complaint. it does seem that you have been blacklisted but you have to complain and find out why and to move forward and get the treatment you need.

I have been blacklisted by a gp decades ago for asking for help with some benefits. promptly took me off the list but she did me a favour as the new dr was better good luck

[helentad]

Ask to go to a different specialist. Where do you live? Rheumys don't specialise in Lupus, you can ask to be referred to a Lupus Specialist. I see Prof Moots in Liverpool. Prof Bruce (think that's right) at Manchester. I am in North Wales but have been referred to St Thomas in London who are the top Lupus clinic in UK. They have accommodation within the hospital that you can use at much lower cost to normal London accommodation.

I asked multiple times to be referred to London and only after demanding it did my rheumy do it. It's all down to cost unfortunately. If you contact either St Thomas or Luous UK they can tell you of a specialist in your region.

Hope you get some help soon.

[janeway24]

My dear fellow Lupies, thank you all for the replies and advice, I know I can always count on you all to offer help and support, will follow the advice given and keep you posted. Thank you all once again. Trish x