Is anybody else having a problem getting their rheumatology appointment through from The Royal Free?

In 2012 I telephoned to say I had not received an appointment all year and was firstly told I had been discharged. When I said I had the results of my heart echo which the operator had handed to me to submit to the consultant at my next appointment and was yet to be analysed, I was given an appointment immediately over the phone. My GP was then forced to write to them asking for my yearly Iloprost admission. When I saw the rheumy she asked why I had not attended for my lung function test and heart echo. I handed her the test results which proved I had attended. "Oh yes" she said sheepishly. "So you did". I then get an appointment for my Iloprost thanks to my gp's intervention. I am handed my discharge summary upon discharge from this, and it states on it ' please make a rheumatology appt for July '13. July is here, so last Friday I rang Rheumatology apps to enquire after the appointment. They tell me no appointment is indicated on their computer for me. " you may have been discharged" she says. I phone my consultant's secretary. There is an answer phone and I leave my name, telephone number, and mrn number. Someone calls me back to say the secretary is on holiday, and what do I want. I explain. Nothing on computer. I know this. Phone PITUITARY since the discharge notes would have come from there. I do. No answer. This is getting ver Kafkaresque! Is this sort of thing only happening to me? Is it right that a progressive and life threatening illness such as Scleroderma should be so overlooked and can they just discharge a patient suffering with it without warning? I am getting quite paranoid as if they are reducing the number of patients on their books. Please let me know if anybody out there is having problems with their appointments or anything related. Best wishes to all .

[living-the-dream-ssc-ray]

Hi romulus

sorry to hear of your experience.... personally I can not praise Prof Denton and his team enough for the support and expertise which they have shown me over the last 16 years of living with the scleroderma and raynauds diagnosis, diagnosed aged 24. I agree that there can often be a wait on clinic days but I accept this due to the quality of time spent during the consultation (with THE experts of this medical field), as well as seeing the conditions that these professionals are working in.

I think that the clinic has been rehoused up to the 2nd floor so hopefully this will help improve the conditions.

I have shared care with my local hospital, Southport District General, and again I cannot praise Dr Sykes and her team enough for the care which they have shown me. However, I must admit that I do take an active interest in my treatments / appointments / follow ups etc as opposed to just relying on the paperwork within the file, but that is probably because I am actively trying to understand why my body is trying to turn in to stone and evict my personality due to the daily unpleasant surprises this diagnosis can bring.

My experience is that it is a full time job managing this diagnosis requiring foreward planning as well as daily discipline by way of skin care regime / diet etc.

My advice to you would be to keep on track of your appointments, as you are doing, and then focus on thoughts which make you feel good.

As well as take support in the fact that appointments were made for you when you highlighted the urgency. as well as the involvement of your GP. I would expect that you are one of a few patients in the surgery with scleroderma, raynauds is more common. I have a great relationship with my GP surgery which has most definitely been assisted by my taking information packs, available from the raynauds and scleroderma association, raynauds.org.uk , in to the surgery for the Drs as well as the nurses. These were recevied very well especially as they include patient information leaflets as well as information highlighting the medical needs of a patient with this diagnosis.

I hope it all sorts out for you very soon ! and that my response has helped you feel a bit better..... Living the dream

[SandraM]

Hi Romulus

I too have to agree with living-the-dream-ssc-ray. The support that Prof Denton and his team have given me has been excellent especially over the last few months when I had pneumonia. I have been to the new clinic on the 2nd floor - very modern and clean, and hardly had to wait to see the Dr. I too have Iloprost but take it upon myself to book my own apt, which they don't seem to mind me doing.

I hope you get things sorted soon. Best wishes SandraM

[adow]

Hi, I hope that you can get everything sorted successfully. I have to agree with the other responses, and my husband has had fantastic care from Prof Denton and his team. We always book his next appointment at the reception, as we leave from the last appointment. We have always had great support from the support nurse there too, always worth a call regarding queries, she can possibly give you some advice about who best to contact. Good luck.

[Hidden]

Thanks to all who responded to my query. Interestingly , I note that you are under Professor Denton and I have never heard anything but praise for him and his team. I am not under him unfortunately.