I saw my haem on Tuesday, and was surprised when she told me I have PV and not ET as I previously thought, stupid of me not to verify this with haem, but was so shell shocked at it all it never crossed my mind, but now I have got used to diagnosis I have had a long discussion and feel a lot happier. They are starting a new appointment system in this area (East Yorkshire) and I am wondering if other areas are using the system, and what you think about it.
It works like this :- 7/10 days before your appointment you have your blood taken at your GP surgery, the result is sent to your haem, at your appointment time you are rung by your haem, and your results are discussed along with anything else you wish to talk about, then your prescription is faxed to the chemist you usually use for you to collect. If it works as it should it will save so many visits to hospital and all the hastle that entails. This system is only for those whose results are stable.
Hope you'r all keeping well
Angela
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AngiP
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I live in Edinburgh where we have a virtual clinic and I see my haematologist once per year have my bloods done @ my GP’s every 3months and then hospital send me a letter with my results ( blood results stable for past few yrs) this works very well, if I have any concerns I can contact the hospital and speak to a member staff or arrange an appointement.
Its reassuring to know that someone else is using a similar system, and that it works well. I too will be seeing my haematologist once a year, and have a clinical nurse specialist I can ring if I have any problems.
That sounds like a very efficient system and each area/hospital has a different way. I attend hospital every 8 weeks. As I live a distance away, I go early in the morning and go straight to the lab for my blood test. I see the specialist nurse at the appointed time, get my prescription and then go to haematology for a venesection which I have needed at each appointment since diagnosis over 2 years ago. It is a balancing act with time as haematology only do venesections in the afternoon and this means many hours in the hospital. I go prepared and the restaurant is very good at lunchtime. I am very happy with my care and the staff are great. I was told that my medication could only be prescribed and dispensed at the hospital so systems really vary according to the region.
Hi, yes different areas do have different systems. It sounds as though you have a very long day on your visits to hospital. Luckily I have only had two venesections, am well controlled by Hydroxy so am lucky that I am able to go on the new system. Keeping my fingers crossed it is efficient.
Regard Angela
We live in Lincolnshire and my partner has ET. His consultant is at Guy’s, London (Prof Harrison the MPN specialist). He chose to continue treatment there when we moved to Lincolnshire 2 years ago. Hydroxy treatment started in December and he is on 3 monthly face to face reviews. The blood is drawn on arrival at the clinic and results ready in half an hour for the review consultation. It is a system that works well. Those with PV can have their venesections on the day as indicated by their blood results.
Hi. I'm sorry to have to tell you that the turtle is nothing to do with me, unfortunately. the forum allocated it to me. I am ashamed to say that I cannot swim, I said I would learn when I retired but seem to have had so much else to do.
To tell the truth I didn't notice until you remarked on it, but it is rather nice, don't know why they should honour me!!! I was more on the athletics side I threw the discus, and represented the East Riding. Happy days.
I live in South Yorkshire. There has been a recent small change in what happens at the hospital. I used to go straight to phlebotomy, have blood taken then an hour (or so) later see the specialist nurse. Now blood is taken in the Haematology department and they do their own testing so I'm not waiting as long to see the nurse. I know some departments in the hospital are having patients have blood taken at their GP's and seeing them a week later but whether that system will spread right through the hospital I don't know.
It would be better for me if they rang me instead of spending a couple of hours just waiting around. Parking is horrendous at my hospital, as I have severe arthritis I can't go on the bus as it is too far for me to walk from the bus stop, my husband usually drops me off and comes back for me later. Last time I drove myself there I ended up paying nearly £6 in parking charges!
That's the system we use now, first phlebotomy then through to see the haematologist, its certainly long winded. The parking is also horrendous at my hospital and charges are high, unfortunately I have to drive myself there as I'm a widow and live on my own. So I hope the new system will suit me better.
I attend Arrowe Park hospital on the Wirral. They have a phlebotomist at the Heamatology clinic so bloods taken there, sample sent to labs and you wait, usually only about 30 mins or so, then get called in to see my Heamatology doctor for a discussion, treatment is agreed and a member of Pharmacy team is at the clinic so dispenses the drugs to you then and there. Will admit I find it very efficient and reassuring and would hate it to change
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Anyone have ET diagnosis with normal BMB
Good news!!
Response to sunscreen question.
Blood test frequency
