Change to consultant

Meredith020
Meredith020 Member Posts: 4
edited 28. Nov 2023, 14:07 in Living with arthritis

Hi,

I'm after some advice as I am at a bit of a loss as to what I need to do regarding the standard of care (or rather the lack of it) that I'm experiencing with my consultant/rheumatology department.

I have psoriatic arthritis and have been on various medication for four years starting on sulfazaldine which I had a severe allergic reaction to, then 25mg of methotrexate in tablet form and have been on 20mg methotrexate injections for the last 9 months.

Since my first consultation and diagnosis four years ago I have seen two rheumatology practitioners and had a couple of telephone consultations with the actual consultant. I have regular blood tests but no other checks during the last four years. My appointments are regularly cancelled at the last minute and tonight I have received a text notification that my long awaited face to face consultant appointment and full check up(originally booked for July, then September, then November) has yet again been changed to a telephone call with a practitioner!

I have been suffering with repeated chest infections, flares are more frequent, lasting longer and more painful, side effects of the methotrexate are still as bad as when I first started, particularly the mouth ulcers and nausea , physical changes to my nails, hands and feet are getting progressively worse and I have been repeatedly told by a number of medical professionals to request biologics but the nurse practitioner insists that the only person who can decide to change my treatment is the consultant who of course I never get to see!


Can I ask to change hospitals as I feel like I am never going to improve or receive the treatment I need if I stay where I am

Comments

  • nicholaj
    nicholaj Member Posts: 64

    I wasn’t in such a distressing place as you seem to be but when I was very dissatisfied with the treatment I was (or wasn’t getting) from my GP I wrote a letter and delivered it by hand to the practice. I also complained to the practice manager. I felt that Covid didn’t excuse the failure on their part to give me adequate care.

    It also helped me to write down the chronology of what had happened as have done done here. Would you be able to write a letter either directly to the consultant or maybe even to your GP describing how ‘abandoned’ you are feeling?

    You could ask the GP to refer you to another consultant.

  • jamieA
    jamieA Member Posts: 698

    Hi @Meredith020

    I would totally agree with @nicholaj and put in writing to both your GP surgery and your rheumatologist your concerns and demands.

    I've only been suffering from PsA since October 2020. I do recognise the constraints Covid has placed on the health service but am less than impressed with both my GP and my rheumatology consultant in the way they have handled my case.

    The consultant didn't examine me during the first 2 consultations (Nov. 2020 and Mar. 2021) - he didn't even get out from behind his desk. He told me I'd need 'suck up' the pain I was in until the treatment worked, told me I couldn't keep getting steroid injections even though they were the only source of relief. Finally at my 3rd consultation inferred that I was lucky as if I were to present as a new patient now (June 21) I'd wait 78 weeks for a first consultation.

    I requested in writing to my GP that they request a change of consultant. I requested in writing from the consultant that he either took steps to help me or transfer me to another consultant. Since the letter I've been put on biologics - without actually seeing the consultant again - only the rheumatology clinic nurses.

    Yesterday I received an NHS letter with an appointment to see another consultant next month.