Consultant keeps cancelling appointment

Melanie17

Dear All,
Am sitting here nearly in tears-my doctor,who is convinced that I have RA,made an urgent referral to a consultant back in September.I have been given 2 appointments,and both have been cancelled.I am in the South East and would be going to the William Harvey hospital.My symptoms are worsening.What can I do please?Melanie

Megrose489

Hi Melanie. I'm just an ordinary forum member, but am sorry to hear that you're having so much trouble in trying to see your consultant.

Does your GP know about this? I think that if I was in your position I would phone my GP and let him/her know that you are still waiting to see somebody. If you were referred urgently in September, it's definitely not good that you haven't been seen yet.

Another thing you could do is to ring your local PALS (Patient Advice and Liaison Services) and explain the situation. If you google William Harvey Hospital PALS, you should find how to get in touch with them. I have heard that they are very good and I hope that they are able to help you.

I hope you soon get an appointment sorted. Take care.

Meg

helpline_team

Dear Melanie

I am so sorry that this has happened to you and am not surprised how difficult you are finding this. It can be very difficult when you are preparing yourself for an appointment and then it is cancelled.

Is your GP aware that these appointments have been cancelled and that you are still waiting? Could you speak to your GP to let them know this and to let them know that your symptoms are worsening. You could also discuss with them the possibility of a referral to another hospital?

You could also speak to your local Patient Advice and Liaison Service (PALS) about your situation. They offer confidential advice, support and information on health matters and provide a point of contact for patients. You can find your local one on the link http://www.nhs.uk/Service-Search/Patient advice and liaison services (PALS)/LocationSearch/363

It is important to look after yourself while you are waiting. Our booklet ‘Coping with pain’ has information about managing pain. You can access this on the link https://www.arthritiscare.org.uk/what-is-arthritis/resources/217-coping-with-pain

We are here on the Freephone helpline (0808 800 4050 weekdays 10am – 4pm) to talk things through informally and in confidence if you would like to call us and speak to one of our team.

I hope this is helpful.

Best Wishes
Dawn

Melanie17

Megrose thank you very much.
I have just called my GP,explained it all to the receptionist and she is going to e-mail the doctor who will hopefully call me.I expect that he will,as I feel that he is dedicated.I feel better for doing this.I was thinking that I just have no faith in this consultant/system at all.I feel that I may be optimistically given another date and another cancellation will ensue.For this reason,I was considering changing consultants via the GP,if possible,but then I realised that the 18 week rule would kick in again.If necessary,I will revert to PALS.I am actually really frightened.That may sound silly,I know,and I am not easily scared.I can feel my joints/muscles progressively getting worse,almost 'going' one at a time,and without a confirmed diagnosis it could be anything.

Melanie17

The doctor came back via his secretary and said that he could do nothing and gave me the PALS number.I also called the consultant's secretary and told her how desperate I was,and that I would travel to any hospital.But I am now really bothered that a new appointment will be given to me,and yet again be cancelled just a few days before the due date.Faith lost here-after all,they have cancelled on me twice already.

Could I adopt a different strategy-pay for a private appointment with a different rheumatologist(it seems there are some specialists in London,which is 70 miles away) and then be transferred to NHS care?Also please,any idea how much an initial consultation may cost?

I have,over the last few days,started with quite bad stomach pains which is unheard of for me.I am not taking NSAIDS.Are stomach pains also a symptom of RA?Many thanks,Melanie

daffy2

Melanie I'm sorry you're having all this trouble. One thing that I am wondering about is the reason for the cancellations, and what arrangements are being made to deal with the backlog that will have been caused(as it's not likely that just your appointment was cancelled). This is something that PALS should be able to find out for you. When I was trying to get a referral for my back one of the consultants was off long term sick and the other two were being asked to do extra clinics to try and prevent the waiting list getting too out of hand.
Might the stomach pains be due to the stress you're feeling at present?

Melanie17

Many thanks for your helpful response.The reason for the cancellation on 7 October was sadly given as a bereavement.I have not been given a reason for the cancellation on 18 November but will contact PALS tomorrow.You may have a valid point here-if there is a backlog,which there likely is,maybe the next appointment will be cancelled too.I can just see that happening-another formal letter with a future appointment date,likely more than a month away,and then the appointment being cancelled again.

My stomach pains could be stress but I somehow don't feel so.Thanks again for your kind interest in me!

Melanie17

I spoke this morning to the consultant's secretary.The stated reason for the last cancellation is that the consultant will be 'on call'.What does that mean,please,and why would he have to cancel his clinic because of it?
Rgds Melanie

helpline_team

Dear Melanie,

I realise you posted a question about stomach pain and you might not be aware that we are not able to post replies over the weekend. Here at Helplines we can't always answer individual medical questions because we are not medically qualified.

If you are in a limbo stage at the moment (i.e. waiting for the specialist) there are a few things that you could explore. Your GP can see you and examine you thoroughly. They might be able to do another set of inflammatory blood tests to see what's showing up. On the basis of those kinds of investigations they might give you different medication to improve how you might be feeling. You could ask whether any of the GPs in the practice has a special interest / knowledge in arthritis and whether they could see you and offer some support. You could see a physiotherapist - they know a great deal about bodies and joints and can offer helpful guidance.

If there is a side to your situation that includes feeling worried about what is happening it might be important to let the GP know, so they can support you fully.

You also asked a question about getting a private referral to a consultant as a one off. You'd be most welcome to ring us and talk that over with us at Helplines. We do a lot of talking to people in these situations and can give you time to think all of that over. The specialist you are waiting to see may have a private practice. You can find out what these appointments cost - you can ask the rheumatologist's secretary about this. But ethically we'd not want to influence your decision in any way.

I don't know if you've posted on the Living with arthritis Forum yet, but that is a good place to hear from other people with arthritis and pick up their suggestions.

I hope that's helpful - and do ring us for a chat.

Kind regards

Guy

daffy2

Melanie, if the consultant is 'on call' it means he has to be ready to respond to a call to deal with an emergency, so he wouldn't be able to run a clinic as well. I'm a bit surprised though as I wouldn't associate rheumatology with being on call, so perhaps there was a problem with A&E cover which he was asked to fill. Again this is something to raise with PALS, as yours was an urgent referral, but might have got lost in the general rescheduling, and they would be able to say, I hope, whether it might happen again, and what's the best way forward for you if so.

Boomer13

Hi Melanie;

I know I'm in a different country but with similar systems, I think? When my rheumatologist is on-call it means he must handle emergency rheumatic illness cases (some are life-threateningly ill, ie lupus, etc) at the hospital. He never has clinic hours during his on-call times and is usually run off his feet or doing mounds of paperwork, plus in-hospital patient call/monitoring, including nightshift.

I can only speculate but perhaps he has been doing extended on-call shifts because of a shortage of rheumatologists in your area? It happens all the time here and is why I travel so far to see my rheum. At least I have that option.

Sorry you are feeling so bad ((((())))). I hope you get an appointment soon.

Anna

Melanie17

Thanks for your support.Due to the advice of forum readers,I called the rheumatolgist's secretary and told her that I would travel to any hospital and see any consultant.It paid off.She called me on Monday with a cancellation for yesterday(less than 24 hours notice) and I gladly took it.I learnt something,maybe,which could be of interest.I assumed that each rheumatologist had their own secretary but now I don't think this is true.Reason-my original appointments on 7 Oct and 18 November(both of which were cancelled)were with a different rheumatologist to the one I saw yesterday.But I was speaking to the same secretary.Thanks to this forum I am now where I should be and I had good advice-in the face of a cancellation,call the consultant's secretary,explain that you are quite desperate.Make yourself as available as possible i.e any rheumatologist,any hospital in the area.It may take a long time to get through,but persist.

Megrose489

So pleased that you finally got an appointment, Melanie. Was it yesterday that you saw the rheumatologist? How did you get on?

Meg

Melanie17

Meg thank you for your interest.I was examined physically,bloods were taken and so were x rays.The rheumatologist says that she thinks I have significant psoriatic arthritis which may have been lying low for a while.I did feel that she 'jumped' on the fact that I once had psoriasis,but I suppose the blood tests should show if it's RA or not.And the dear lady gave me a steroid injection so the pain has eased and I am so,so grateful.I must go back in 14 days,presumably to discuss results and treatment plan.
Melanie

Megrose489

That sounds like a positive appointment, Melanie. Good luck for your next appointment.

Meg

helpline_team

Dear Melanie,

I'm so glad that you've been seen and are beginning to get some help. Just one thing to bear in mind is that if the consultant thinks you may have psoriatic arthritis although it's similar to RA it's not quite the same. The it's from a family of inflammatory arthritis types that are called spondyloarthropathies and are notorious for not showing up in blood tests. Often getting a confirmed diagnosis of these may include beginning a disease modifying treatment and seeing how you respond.

A specialist may want to see some scans - looking for particular signs of inflammation & also a blood test looking for the genetic marker HLA B27 may also help the diagnosis.

Here's a link to our fact sheet:

https://www.arthritiscare.org.uk/what-is-arthritis/resources/237-spondyloarthritis

Do give us a call if you would like an information pack send to you.

Kind regards

Guy (Helplines Team)