Care Advice

[Hocus58]

Hi I am in the UK and was diagnosed with PV March this year. I have been having consultations venesections and taking aspirin through NHS care since then.

My last venesection was 3 weeks ago and took my HCT to 43 and Hb to 13.1.

I have a face to face appointment with haematology consultant at the end of August. I also have an appointment with MPN Specialist Dr Mark Drummond on the 10th of October.

I am confused as to how this will go seeing the NHS consultant and then the MPN specialist in October.   I don’t want to tick anyone off in the NHS as they have been great, even starting treatment whilst waiting on the JAK2 blood results. Can they work in conjunction with one another ?

I’m sure that some of you in this forum will have been in the same position and as always could lend much valued wisdom on the above.

In anticipation, Linda 🙂

[Mauritiu]

Hi LindaI can't answer your question about shared care but I am interested in you appointment with Dr M Drummond. I was diagnosed in September 21 with PV and have been considering making an appointment with him at some point. I am presuming you are in Scotland??

I am doing OK with my local care just now. Can I ask how you booked an appointment with him? Did you do this yourself or were referred?

Sorry for all the questions, I am really interested in seeing him sometime.

I can only presume there will be shared care after you see him.

I hope you are doing well 😊

Take care

Gillian

[ainslie]

There is always a risk that your local Haem will feel ticked off as you put it, depends a bit on egos etc. Mark is well respected and usually listened to by local haems in Scotland, if you see Mark and he has nothing to add to your local haems view then you could not tell your local Haem and ask Mark to write to your Haem or GP, ie so it won’t go on your NHS record. If on the other hand if Mark has valuable input and suggests something additional or different to what you have been told already then a letter from him to your local Haem is valuable. If that ruffles feathers (it shouldn’t if everyone is grown up and focused on improving you) then it’s up to you to decide if the risk of upsetting someone’s ego is worth the benefit. I hope that helps.

[Hocus58 in reply to ainslie]

Thanks Ainslie 👍, I have no issue upsetting someone’s ego if the result is optimal care and focus. I just wondered if anyone had a joint care thing going on.

Have you seen Dr Drummond ? I have, like you say, been told that he is well respected and have only heard good things about him. I thought that as I am at the beginning of diagnosis an expert opinion was the way forward.

On my first f2f with the haematology consultant I seen I did ask if he was an MPN Specialist and he said no this was not what he had studied in depth. I did mention Dr Drummond and seeing him and he did not seem put out. I have also had a telephone consultation and my next f2f due in August and will have not seen the same person twice 🤷‍♀️

Thanks for the input

[ainslie in reply to Hocus58]

I think your plan is a good one, I have seen him several times over the years. He is good.If you dont have a permanent haem currently (me neither at Western in Edinburgh) then it may well be wise to ask Mark to write them to set out his view on best way forward, that way the various haems that will see his letter your file will likely take his advice. I feel it is wise to have a MPN expert that you can consult from time to time to advise correct direction especially as you are at the beginning andcurrently having various haems who are not MPN specialists. He also works in Glasgow on NHS at Beatson and he usually knows the haems in Edinburgh so knows how the system (sort of) works.

I hope that helps.

[Hocus58]

Thank you Ainslie will ask Dr Drummond regards writing to give direction going forward 👍

[ciye]

Haemotology should have no issues working with Dr Dummond he is a specialist in his field. I wouldn't worry about treading on toes, you want the best of care and that will always require seeing a specialist I am waiting to get an appointment with Proffessor Harrison my has no referred me.

[Hocus58 in reply to ciye]

Thank you Ciye for your kind reply. Yes I see no reason why this cannot be the case, professional people working together to deliver the best care possible 👍