A model of good MPN care

[MarybellM]

I recently had a crisis of confidence in the care my husband (who has PV) was getting. The nurse in charge of his case left the clinic and there seemed to be no replacement who knew what was going on. Happily, the nurse came back (he’s a hero...) and all is well.

So, I thought I’d share on here what happens, so that others could ask for a similar set up.

We live in the Outer Hebrides, so obviously there is not going to be a haematologist in the vicinity! Our GP referred hubby to mainland hospital haematology department (Raigmore, Inverness). Initially he went off island and saw the haem but after that he is cared for by a specialist nurse who checks his blood results and decided when he needs venesections, a new blood test (done locally and sent off) and medication. The nurse emails or phones and we can contact him any time. The nurse will consult with the haem at Raigmore who knows most about MPNs and the really reassuring bit is that apparently the haems at Raigmore are also in touch with the MPN specialist in Glasgow if needs be. So at the moment my husband and I have the all important CONFIDENCE in the management and monitoring of his PV. Surely this model could be achievable in other health boards too. How does this compare with other situations?

[Hydrox]

Hi I am Et jak 2 7 years. For the last 2 years I now see a specialist nurse 3 monthly in a similar set up, as my et is now stable. I can call them day or night if necessary and it works for me.

[MarybellM in reply to Hydrox]

That’s great - good to know that other Health Boards are using a similar structure. Good evidence for a campaign if other people in other places need support.

[MPort]

Mary that is wonderful to read. How easy is it for the nurse to liase rather then all the trouble and expense for you to go to either hospital. Also how much cheaper for the NHS. Efficient systems are rare. So good you have one.

Mairead

[MarybellM in reply to MPort]

If people read about these systems on here, maybe the word will spread and other authorities could learn from what’s happening in other places. Or am I just being a bit naive?

[MPort in reply to MarybellM]

Well let's hope so. I have PV since 05 and some years into it when Pegasys was 'working' I was on 3 monthly hospital visits and I was travelling sometimes for many months.

So I started a 6 weekly blood test plan, either at local GP or paid for in New Zealand or Australia. Depending on the results ie if HBC was too high i would contact hospital and come in for venesection. Or down other I had to have them in each country which was tricky to arrange.

So I have taken on the role of the nurse so that I keep tabs on my counts. The consultant now knows about this and puts it in follow up letter.

So even if the nurse option is not available there are other ways for us to keep check.

Let's hope the local GP nurse option comes into play.

Mairead

[Vigiindia]

Yes thats a really wonderful thing.

Am also locally check my blood and send it directly to hematologist via whtsup app and he consult me via same way

[MarybellM in reply to Vigiindia]

Wow - that’s making even better use of technology!

[Photoshopuser]

Glad to hear all is well now with care. Very unnerving though. I smiled when I saw where you are from because I never see the area mentioned and I have a Scottish friend who lives in England but has a home in the Outer Hebrides and makes beautiful quilts based on the landscape there. Looks like such a gorgeous place.

[MarybellM in reply to Photoshopuser]

It’s wild and windswept but still very community orientated and with very low crime rates. On balance it’s been a good place to live!

[MarybellM in reply to Photoshopuser]

Ps which island does your quilt-making friend live on? Maybe I’ll know her- it’s like that here!