Hello. I was diagnosed with PV some years ago and need a venesection every two months. I live in a coastal town in Somerset. There is a small hospital but it is unable to offer treatment. A Mobile Chemotherapy Unit (MCU) visits the town every week and I was able to have my treatment on that. This was very convenient as I live a five minute walk from the hospital. I have recently been told that a decision by the "management" of the local trust has been made to withdraw venesections on MCU's. No reasons were given but I suspect that it was because of funding and staff shortages. To have my treatment I have to go a Day Care unit, a round trip of 20 miles, or the nearest oncology unit, which is a round journey of 50 miles. This is not convenient as I have to rely on poor public transport or people to take me. I would be interested to hear if anyone else uses MCU for treatment and has experienced the same problems.
I would add that the treatment I received on the MCU and at the Day Care Unit is absolutely first class.
David Bates
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DavidBates
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I can’t offer any experience similar to yours because I have the great fortune (at least in MPN terms!) to live in London and be looked after by the team at Guys.
But it is really important to highlight your experience and frustration of trying to get something as simple as a venesection outside of a large conurbation. I understood from chatting to the nurses on the haematology day unit at Guys that nurses are no longer routinely taught to use venesection needles. Indeed the nurses who come on to the day unit from the wards have to be taught there. It seems to be regarded as a somewhat specialist procedure. This might account, at least in part, for your difficulties.
I really hope that others will have experiences to share with you. And I wonder (if you have the strength!) if this is something you might take up with your MP or a local campaigning organisation (I doubt you’re alone in trying to access essential health care services).
With regard to a venesection, as you say, the nurse at the day center I attend has been trained in the procedure. She tells me there are 14 clients who receive this treatment, an indication of the rarity of the condition. As far as I know she is the only trained nurse to do the procedure in an area with a population of over 25,000 people.
The nurses on the Mobile Chemotherapy Unit are provided by the oncology unit at the nearest major hospital. I understand all nurses in this unit can do the procedure so there is no excuse for having the treatment withdrawn on the MCU for reasons of staff shortages.
I have raised the matter with my consultant at the oncology unit who is checking with the "management". If this does not provide any help, my MP will be asked to intervene.
Oh no! How awful. My very first heamo visit was approximately a 40 mile round trip.
It included driving to town walking from car park to train station. Followed by two trains and a bus. I was suffering mentally and physically horrendously.
This was repeated several times
Until I was given the option to move a lot closer to home for appointments at my local hospital. ( it was all about where I could be seen as soon as possible.)
I don’t have to have venesection school thank goodness -ET.
I can only think that just the thought of you having to go through all this is going to be draining for you.
Are you able to have hospital transport? Not ideal I know but maybe something to look into.
Your trips to the hospital sound worse than mine. It is interesting to see you were moved to a nearer hospital. The oncology unit I sometimes visit is a round trip of 50 miles. When I was first diagnosed I was going every month. After a few visits the consultant kept telling me the blood numbers were better and to keep taking the tablets. I saw her for about a 5 minute consultation on every 2 hour trip. I eventually had a moan and she now telephones me!
In the town I live we have a small cottage hospital which cannot deal with heamo issues hence the trip to a proper hospital.
There are a few car schemes locally which provide transport for a small fee which I can use if necessary.
Lol, sorry your situation is far far worse. It’s on going and appalling. When you have the energy, do kick up a fuss. I thought cancer patients were entitled to free transport. I now go to London. My choice. I have free rail travel due to husband working on railways. First class. I totally chill. I really would struggle if I had to do what you have to do. - venesection!!
Please don’t tell me you have to drive!! Oh my word!! if I win the lottery I’ll pay for your taxis.
Loads of sympathy empathy and hugs.
Ps If ever I need to moan/complain about delayed trains or clinic appointments again. I’ll think of you.
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