Hi, I was diagnosed with CALR positive Essential thrombocythemia (ET) in Aug 2023, and then also with ME/CFS in June 2024 and my Haematology specialist nurse was a big help to me chasing things up and just as someone to talk with about my many and various overlapping symptoms. I had my last appointment with them at the end of October and we moved into our new house in Crieff December 20th. I got the registration at the new GP’s done immediately and they noted a hand off letter had been sent to the haematology team here but I haven’t heard anything from them yet and am due the usual battery of blood tests in a week or so.
I’m not sure what I’m meant to be doing to chase this up, I checked with the GP that the letter was sent , they confirmed it but also sent another one and to top it all off I’ve had an awful couple of weeks symptom-wise and today is the first day I’ve managed to make it to the computer in a week.
I know this is a bit rambling and I’m not even sure what I’m asking really other than does anyone have experience of moving to a new NHS area and how quickly things got into their normal rhythm?
Does anyone have experience of NHS Tayside & Haematology, should I just wait or burn energy trying to get something done?
Sorry to read you’re going through this - it sounds like a lot of extra effort to get you’re usual appointment.
I had a chat with one of our nurses to find out what more you could be doing. You’ve done all the right things in contacting your GP and it sounds like they’re trying to be helpful. Another suggestion was to ask your previous hospital team in Fife to send a covering letter for the team in Perth with a summary. Usually they do this to link up and communicate when someone is being discharged from one team to another. Do you know if anything like this has happened yet? It could be worth a phone call to your previous CNS if not as perhaps it would help get things moving…
Hope this helps and that you get sorted soon - someone else of course may be able to reply with more info about their experience of your new area/ moving services too.
Thanks for the response @Ali_BloodCancerUK my old fife team did send a covering letter, and then when I chased up with new GP’s they saw the letter in my records and also sent it again along with an extra note that no contact has been made, that was the 7th and I still haven’t heard anything from them yet. I can’t think of anything else I can do right now but at the same time my health has been really bad the past week so I hope I can get my tests and just introduced to the new team as soon as possible as I know my case is unusual and I have a lot of symptom overlap from everything but previously the Myeloproliferative neoplasms (MPN) team were the only ones making any actual headway and I don’t want that to slip backward.
Oh @Sp4rkR4t what a hassle when you least need it, but it is good to hear from you again.
For me I am caused the least stress and don’t burn energy by emailing people.
I keep to a diary of events format, so I do not ramble and it is easy for the other person to understand what has happened and what is the way forward.
Please do let us know how you get on and really look after and be kind to yourself