How many of us have access to a clinical nurse s... - MPN Voice
How many of us have access to a clinical nurse specialist in MPN's ?
As far as I am aware there is no CNP at my Clinic. I always see either the Consultant Haematologist or Registrar. I think that this is probably more the standard, under the present funding restrictions. There has over the past few years been a marked reduction in the recruitment/appiontment of Specialist Nurses in many NHS Trusts throughout the UK.
However that said, I have no complaints regarding how my condition and treatment is managed.
I have access to two MPN's who've always said they're at the end of the 'phone if I have any worries or concerns. Apart from my initial diagnosis when they were unbelievably helpful, I've not had cause to speak with them thankfully - especially as I've seen how incredibly busy they've been when I've had my routine appointments with the haematologist. It's good to know these Angels are there if needed though.....
I have access to a MPD Nurse and was told if I have any worries or problems I can ring her anytime.
I haven't heard of this, but have been very impressed with the treatment I have always received at my clinic at the Western General Hospital in Edinburgh. They are a supremely proficient team from the minute you walk through the door. I feel lucky that they have put so much effort into the completely smooth running of the very busy clinic. All members of the team from the nurses and lab technicians who have our blood results quickly on the screen in time for our consultation up to the Consultant Haematologist are courteous and the "on-site" pharmacist who deals with our prescriptions there and then before we leave the clinic makes for a good experience made out of what could be a trying one for many patients.
I have been treated by a specialist nurse for some 4 years and it works well . She can refer to head of hematology if any surprises come up but so far that has happened. this is the GWH at swindon wilts
town crier
No, not now - i used to and it was a significnat advantage as you could phone up then and there if worried, something consultants/doctors don't tend to encourage. I used to work in the NHS and I don't think funding is the sole issue here: it's also about diversification/delegation, training and size of practice. Also, Macmillan tend to specify/encourage nurse specialists when they pump prime cancer centres, which can then be available to us lot with MPD. Is this the sort of initiative this website could think about leading a concerted lobby for?
Hi jane13, that's a great idea! How would we go about it ?
I believe all MPN patients should have access to a CNS for the reasons you have mentioned.
In my experience Haematologists often treat the counts and not the person. If we had the support of a CNS I think this would be less likely to happen. It would also take a significant amount of the workload off the Consultant allowing them to concentrate on other aspects of patient care.
The support of the CNS would also be invaluable when trying to explain to your haem about complex and often invisible issues like fatigue, cognitive issues, issues with medication etc. (could have went on for ever with this list).
Having an MPN affects our lives to such an extent that it is impossible to cover all issues in one brief appointment with your haematologist every three months or so.
Hi,
I totally agree. I have had PV for 3 years.
My haematologist definitely treats only the count and not the person.
I received no directive with regard to diet, lifestyle or exercise ( stay away from alcohol, drink 3 to 4 litres water per 24 hours, avoid sweet sugary foods,
Walk/cycle at least for an hour a day, avoid bodily contact with water etc etc) I had to find out for myself. I think I know more about Aquagenic pruritis and fatigue than he does, but he continues to be unreceptive to ideas, my point of view and the fact that mpdvoice exists.
I think it would be a great idea if mpdvoice made themselves known, perhaps with an accompanying letter from Claire Harrison, to every haematologist in the country!
If I can make the next London forum I will, but it's a long way from Cumbria!
The idea of MPD voice writing to all haems sounds good to me and if we can get someone approriate to front the letter even better. But what would we say? do we just want to announce our presence (quick and easy)? or say something about CNSs? are there more important things to ask for? or should we be like the stroke association and publish a set of standards for good care/service (great thing to aim for but take years probably!!).
We could use the forums to work this out and get a concensus?
I have no idea about the structure of MPD voice so don't know how we would move forward
I go and see my Hem usualy and get on fine. There is a nurse at our clinic and she says she is there if you need her. I have asked her to try and get a group meeting for those with MPN in the area but I dont think she is doing anything because whenever I email or phone she always gives me an excuse. I know they are very busy but if they haven't got the time why cant they just say that so that we can try and do something else.
When I was first diagnosed I was given a key worker I could ring to talk to if I was worried. Spoke to her a couple of times and this was very helpful at the time.
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