Can anyone tell me if St Thomas and Guys are offering telephone appts as well as face to face consultations. I would like to minimise the number of times I need to travel for appt where possible. Since COVID I’ve had all of my appts over the phone (currently under the care of Aberdeen Hosp) but need to transfer back to a hospital in England and am trying to figure out the best option.
Also, for anyone with St T and G are you able to collect medication every 6+months? I’m on Pegasys and normally have about 4-6months supply to make things easier.
Thanks
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Vicki_02
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Hi Grendall, My local hospital doesn't have an MPN specialist so when I progressed to Myelofibrosis my haematologist was wise enough to realise that my case needed expertise that she didn't have. She contacted Guy's Hospital who then arranged for me to have a telephone consultation approximately every three months.
As I am having an SCT next month, I am also now looked after by the transplant team at Southampton Hospital. I am currently between hospital stays so I see the nurse at my local hospital for a weekly dressing change (Hickman Line) and blood tests.
Really glad to hear of someone recognising that you needed support from elsewhere and to continue support you. Good luck with your SCT I hope it all goes well.
Like Otterfield I have telephone appointments with Prof Harrison at intervals depending on need. She then corresponds with my local Haematologist giving her suggestions for my treatment. There is an open channel of communication between the two. My haematologist and one of the haematology nurse specialists locally have worked with Prof Harrison in the past which is a big plus for me. The cooperation between them all gives me a really good quality of care.
Hi. I can’t imagine telephone consults are an issue at Guy’s - quite the reverse!
I’ve managed to get a F2F for August in part because even when consults are over the phone I go up to the cancer centre for bloods so I might as well add on an hour or whatever and get bloods done in the department and see someone in person. I’m not sold on the telephone option but I can see it’s much more efficient for them and seems now the preferred option for routine appointments.
When I’ve had telephone appointments my drugs (HU) have always been couriered to me. But I am in London.
Hi VickiYes I have 3-monthly appointments with Professor Claire or a member of her team. I actually prefer face-to-face as it gives me the opportunity of another mini-adventure in my mini-campervan. I drive up from Herefordshire, camp on Epsom Downs and get the train up from Tattenham Corner to London Bridge. There's a lovely pub just round the corner which opens at midday and serves good quality vegan food.
However, these days they actually prefer to do tele-appointments where feasible and my local GP does the bloods two weeks in advance, but never remembers to send them anywhere so I have to micromanage that. I personally don't like doing it over the phone and they have no plans to offer video consults.
As for the Pegasys, they courier it down to me the same day or the next after a phone consult.
Yes they do do telephone appointments I now do alternate ones. It’s something to discuss with them and of course your blood tests play an important part
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