Pretty much posting here as a last resort in case people have any excellent ideas.
I receive a fortnightly infusion that I have been on for the last 19 years. Quite frankly, it has turned my life around reducing my hospital admissions from >4 a year, to basically none. Ahead of my move to Bristol, I asked for contact to be made with the rheumatology team in Bristol so I could continue my treatment there. I was told this had been sorted and received a letter that my consultant had written. After hearing nothing for three weeks, I phoned Bristol to see if they had received the referral to the consultant so I could begin preparing for my move. I was told there was no record of a transfer being made and the consultant AND hospital that had been written to were at least six years out of date. I've managed to make one trip back to Leeds for my treatment but the stress of the travel and long day bedded me for 48hrs. I've been in touch with nurse specialists to see if I can go on a much lower dose injection so that I can at least have some systemic control, even if it means I need to increase analgesia and steroid use in the interim. I'm now five weeks in to this saga. Nothing from the nurse specialists bar a text to say 'someone will be in touch' and they haven't five working days later. I'm now having to plan another trip to Leeds for Friday, which will mean I miss a lecture on effective consulting which should prepare me for GP placement next week. That's not to ignore the potential for the day to leave me bedridden again from exhaustion.
The consultant and nurse specialists don't seem to be discussing with one another and they're certainly not responding in the timely manner this needs. A GP referral could be months. I'm genuinely at my wits end with this now so willing to take suggestions from strangers on the internet. Any suggestions?
TLDR:
Referral to hospital in new city not made. Alternative treatment sought in the interim. Nurse specialist and consultant not responding in a timely manner. Fortnightly trips to and from Leeds are expensive and leave bedridden. Any suggestions for who I could contact to push this on?
I receive a fortnightly infusion that I have been on for the last 19 years. Quite frankly, it has turned my life around reducing my hospital admissions from >4 a year, to basically none. Ahead of my move to Bristol, I asked for contact to be made with the rheumatology team in Bristol so I could continue my treatment there. I was told this had been sorted and received a letter that my consultant had written. After hearing nothing for three weeks, I phoned Bristol to see if they had received the referral to the consultant so I could begin preparing for my move. I was told there was no record of a transfer being made and the consultant AND hospital that had been written to were at least six years out of date. I've managed to make one trip back to Leeds for my treatment but the stress of the travel and long day bedded me for 48hrs. I've been in touch with nurse specialists to see if I can go on a much lower dose injection so that I can at least have some systemic control, even if it means I need to increase analgesia and steroid use in the interim. I'm now five weeks in to this saga. Nothing from the nurse specialists bar a text to say 'someone will be in touch' and they haven't five working days later. I'm now having to plan another trip to Leeds for Friday, which will mean I miss a lecture on effective consulting which should prepare me for GP placement next week. That's not to ignore the potential for the day to leave me bedridden again from exhaustion.
The consultant and nurse specialists don't seem to be discussing with one another and they're certainly not responding in the timely manner this needs. A GP referral could be months. I'm genuinely at my wits end with this now so willing to take suggestions from strangers on the internet. Any suggestions?
TLDR:
Referral to hospital in new city not made. Alternative treatment sought in the interim. Nurse specialist and consultant not responding in a timely manner. Fortnightly trips to and from Leeds are expensive and leave bedridden. Any suggestions for who I could contact to push this on?
