In Pain and my appointment has been cancelle... - Vasculitis UK

Vasculitis UK

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In Pain and my appointment has been cancelled - why are we treated this way?

Porky profile image


I have been counting the days to my next consultants appointment in two weeks time as I am in pain with my joints or the muscles round them, I don't sleep well as the pain wakes me and my movement at my shoulders is becomming more restricted which is starting to affect my work. Then horror today I got a letter saying my appointment has been cancelled and remade in December!

I rang the hospital and asked why, they said that the clinic template had changed and all patients had been rebooked, I explained the problem and was passed to the appointments team leader but she just said there were no cancellations, nothing she can do even though at my last visit the consultant he said to see me in 3 months which ended up at 4 and now is pushed out to 7.If it wasn't for the pain I'd have just accepted it.

At the moment I use over the counter pain relief I was really hoping he would be able to help with this.

I'm so cross and upset it always seems to be such a battle to be treated properly (sorry about the spelling) that I find myself getting quite tearful. I'm in constant fear of not being able to continue my job (am self employed) and I'm always worrying.

Sorry for the rant.

19 Replies

I do not think it is a rant. It sounds like a very poor service. I am not sure what you can do about. I would ask my GP to see if there is anything he can do. I would also complain to the Trust to which your hospital belongs. 7 months is much much to long. If all else fails than perhaps a letter to your MP. Other people might have better suggestions.

See if your hospital has a Patients Advisory Liaison Service (PALs) to see if they can help.

If you have a confirmed diagnosis your GP shoudl be able to prescribe a more relevant and stronger form of pain relief. If the pain becomes unbreable, take yourself to A&E.

I had an appointment cancelled last year before I had a diagnoses. I went to my GP and she got me an appointment the following week. Worth a try. Good luck.

John_Mills profile image

Sometimes ringing your consultants secretary and explaining the problem can get you an earlier appointment too.. as Jann says you can put an official complaint into the local PCT. IF these people suffered with Vasculitis and were in pain from Vasculitis they would soon make an appointment available for themselves. If all else fails and the pain becomes too much get someone to take you to A&E.

all the best



Thank you, I'm seeing the blood monitoring nurse on Tuesday and will speak to her as she knows that I'm having problems, at my last visit to her I said it was gettig worse and she said then, hang on if you can as you have your appt in a few weeks and the consultant will sort it out!! I will also see my GP as a back up.

I'm trying to keep calm about it but am going to contact my MP, I know that if I get worked up my problems get even worse. I don't want to be seen as a moaning patient but the rheumatology provision in my area is very poor. I feel very vunerable with it all.

I had the same problem with my hospitals new system,Have been seeing my consultant every three months for the pass four years ,then got an appointment for six months !

Rang my Wg secertary,she spoke to him and he rang the appointment centre himself and said it was not happennig.I got my original date but a better time.

They then thought they could do the same with my September one ,e mail to wg sec again no problem appointment made.

Worth a try .

I did have a similar problem last year, rang consultants sec, she was not happy and said that I only one of his patients! If I pluck up the courage I'll have another go.

hamble99b profile image

the secretary is probably your best bet.


Yes, I'm going to give it a go and am thinking of asking my GP if he will to refer me to another hospital with a specialist centre.

Hi all hospitals have patient advisory liaison services set up to liaise with the clinicians and managers on your behalf and help you sort out problems. I think you should give them a try if you have no joy with the consultant,s pa. just ring the switchboard and ask for the PALS service.

Thank you, yes I am going to persue this. When I do have my appointments the consultant always stresses how importnant the pre clinic checks are eg BP, Blood O2, pulse...Urine. Well not that important if there is a change, 7months is a long time. One of my family who works in the NHS said that this can happen if they run out of funds! She was preping up 7 clinics yesterday and all but 1 had been cancelled!

Whilst I agree with all the advice given above (particularly Susan's re.contacting your specialist's secretary) I personally wouldn't tolerate such neglect and would suggest you change hospital/consultant. I'm sad and sorry to say that, was with many so called service industries you have to push to get heard/seen. Have you thought of contacting your local MP and the press?

Healthy wishes.

Personally, I would get hold of my MP and give my GP a visit too. There are lots of options for pain relief. Tramadol for symptomatic paid is what I use along with Duloxetine for ongoing chronic pain. There are endless drugs although you GP may not readily prescribe them all as some are expensive.

Regarding you appointment, I'm afraid this is all about CUTS. If you're in pain the 'deficit' really shouldn't be an issue. However, it is. The Government, for whatever reason, seem hell-bent on dismantling the NHS and forcing those who can afford it down the private route. The rest of us are going to suffer!!

It's ALL about money I'm afraid.


I rang my GP surgery and explained they say this is happening more and more and are trying to get hold of a Dr to give me something for the pain. I rang the Consultants' sec and she said her hands are tied that this is coming from the managers at the hospital and I'm not alone, agreed with my complaint and said she'd put me on the cancellation list but that there are lots of other patients on it! I was given the Rheum nurses line to call but the answer machine said that if you call on a Friday the message won't be picked up till the following week. !!!

Am writing to MP. Is this just a SE region thing?

Hi get in touch with PALS these people are amazing they sort it all out for you and keep you in the loop all the time. PALS have workrd wonders for me so ring them at your hospital thats what they are there for. Sorry you are in so much pain problem is or own doctors dont know whattp prescribe. Good luck.

It would seem that I am very lucky with the consultant that I have (Dr. Makadsi at East Surrey Hospital), he gave me his secretary's phone and his email address and told me if there were any problems to contact him.

Clearly and happily this is not a nationwide problem.

Well I've now exhaused all options now, heard from Gp's and they say no and I can understand all points of view except hospital managers. I've exhaused myself with this.

I would like to thank all for the support and response. I have many days when I want to give up and this is one of them. Yeah for bank holidays, the thought of the possibility I might win the lottery!!!

I live in SE and go to the Queen Elizabeth Queen Mother hospital in Margate. I have a direct line to a specialist nurse and if I ring her I leave a message but get an answer the same day. My rheumatologist has often fitted me in before a clinic or tacked me on the end. Like all hospitals they have money problems but I have been told I am a special patient and have had really good treatment. Your consultant would probably be horrifed at your treatment but the problem is getting through to them. Good luck and let us know how you get on.

Dear Porky,

Firstly you are NOT having a 'rant!!! Not at all, if this had happend to me I would be furious!! How dare they treat you like this!!! Yes contact PALS, yes contat you MP, yes contact the local press, who may be able to help, yes contact your local radio, yes be a b...dy nuisance to the lot of them!!! Then do it again twice more!!!!! (sorry I thought it was YOU having the rant!!!).

Please do let me, all of us, know how you get on, will you?

Good luck anyway


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