Is there anything we can do as a group to ensure haematologists know more about MPNs?
(I have had 4 different ones in 4 years and not found any of them able to answer my questions satisfactorily. It seems to me I know more from the literature available for us , thanks to MPD Voice, meetings etc My present haem , youngest of the lot so far, seems particularly uncaring although that may be her 'manner'.)
Would it help if we had a questionnaire designed to elicit how we feel about our haems' responses to our problems? If the info collected were presented to a professional body ( is there one?) for haemos and/ directors of medical training courses, would this help create a change?
Perhaps this is too ambitious and there are better ideas. However, if they had an inkling of the gap their lack of understanding creates for us, I think they would be shocked. The NHS puts a lot of emphasis on Patient Satisfaction which haemotologists and all medical practitioners must be aware of.
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Mwalimu
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Hi, I found also that my haematologists didn't know that much about my PV. I live in the north east of Scotland so to ask for a second opinion in a private appointment would have meant an 8 hour all round trip. I have wondered if Professor Harrison at Guys will see people on a private basis from then nhs in Scotland as she seems such a nice person as well as an expert.
When I attended the MPN Voice Day in London, I think two years ago, that made me realise that there were experts in the field. I have kept going to my local haem, a 3 hour round trip but if my PV becomes unstable or progresses, I will be asking for private referrals.
I can't say the haems I have had have not been nice or understanding but I just feel they don't as the same knowledge as Professor Harrison and the other experts in London. I am not sure if there is anything we can do as a Group, perhaps Maz can advise.
Hi Aime. I live in Scotland too and asked for a referral to Claire Harrison and my haematologist was happy to oblige so I went down to London to see her. I am going to be moving this year and I'm concerned about landing with a haematologist who does not understand MPNs.
Hi Beetle, thank you. I think I will be asking for a referral to Prof Harrison too. First though I'm having lots of joint issues so need to get them and their symptoms sorted out so I know if it's my PV that's causing the symptoms or the arthritic things!
Good to know it's possible to see an expert though, thank you so much for replying. Kind regards Aime
PS hope you find a good haem. Xx 😺
I live in a little old New Zealand, I cannot understand how I was referred to a haematoligist after 3 serial blood tests showing my platelet count was abnormal. This was done by my GP. In a matters of weeks was seen by the local haematoligist. Following further blood test/ gene testing and a BMP was diagnosed with ET. I have read many stories like yours about medical treatment. What cannot understand is you live in the UK. This where my haematoligist follows the guidelines for treatment. I would have thought UK Dr's would have been really informed.
Dear All, It seems to me that somewhere along the line NHS consultants in the provinces can only give expert opinion if they have experienced the condition before with another patient, Whilst I was lucky in Swindon with my Haematoligist who was well experienced , My daughter was not so lucky and went 3 years undiagnosed with a spinal tumour at the same Hospital and at Oxford as well. She eventually was diagnosed in London at St Thomas,s and treated successfully at Kings College.
I would suggest writing to the Hospital and suggesting that they brush up their staff retraining programmes . Nothing will ever improve if defects are not recognised
I had exactly the same problem here at my local hospital where I saw 5 different locums in less than 9 months.
The last one was a German guy who, because my haematocrit had shot up from 43 to 48 all of a sudden, asked me if I'd stopped taking my medication.
My reply was " what sort of a half wit do you think I am?"
My next move was to hit the Internet and find a haematologist who specialises in MPN's. We're extremely fortunate here in Windermere to live only two hours from Manchester, and so I schlepp down to the Chrsitie every 5 / 6 weeks.
The staff are superb and my haematologist is even better.
Perhaps anyone out there who is dissatisfied with their treatment might like to start hunting for somehow her else to go.
All I had to do was ask my GP for a letter of referral and voila! Job done.
A forum for MPN'S was organised by my hospital (Colchester) last January (and the year before that).
Claire Harrison lead these and Maz attended the second one as well.
The lead Haem nurse was instrumental in arranging them, I believe and I'm pleased to say that the consultant I see also attended for some of the time.
Local forum's are a great way to share idea's and the medical team could hear how symptoms affect us in different ways.
I do realise that maybe I have been fortunate in my dealings with G.P.'s and consultants. I don't expect GP's to be experts on blood diseases but if I have had a question that they cannot answer, they have tried to find out for me.
I also try to explain about E.T. when I have a blood test or any contact with other NHS departments, (some of the nurses have seen other patients with this disease, some have never heard of it). To be fair, I'd never heard of it before and it took several weeks for me to take information on board. Over the years I have become much more informed about E.T.
Back to local forum's - could more of these be organised around the country? I do realise that hospitals have a lot of financial restraint now but if my hospital can manage it (it is in special measures but pleased to say, I haven't experienced ANY detrimental effects from this) then more possibly can.
This site is great for MPN's sufferers to share tips on how to deal with symptoms - night sweats, itching, tiredness, fatigue and even how to talk to family and friends. Some work for me, some don't, but I think this is an indication of how the different MPN's,symptoms and treatment are for us.
I wish it was as easy getting a referral from your GP. Mine had me in tears 2 days ago as he outrightly refused to send me to a specialist only 40 minutes away as he said he couldn't justify it as I was under the haemo at our local hospital. Trouble is my haemo knows squat about PV. I am financially unable to go private as I had to give up work to look after my bed ridden 92 year old mum so I feel so let down. Your suggestions sound brilliant. I am going to ask my haemo exactly what she knows about this condition and ask if she will recommend a referral to the Freeman. In my other post I said I wish I could get the so called experts to look beyond the blood tests as I have read time and time again that symptoms do not stop because blood tests are stable. Thanks for your post, I think you have made a lot of people feel better about challenging their health care provider.
Jolly, you stick in there, you shouldn't be reduced to tears!! I understand totally about the strain of looking after elderly parents and admire you for being able to do it! I had a bad time with my parents, mum had dementia and eventually had to go into a home for her own safety and dad got a place with her but they never really accepted that I couldn't look after them, mums care would have been 24/7 and constantly with her in case she wandered out of the house, left the cooker on, etc.
Well done to you, you are a star looking after your mum but remember sometimes you have to think of yourself. I was eventually diagnosed just after mum and dad went into a home and think virtually had a breakdown.
Ask for the referral and insist on it, it's your body and life. Kindest regards Aime xx😺
Lol jolly Jilly, I answer to most things. Mum is an angel and I love her to bits. She had a fall in her bedroom yesterday and all she worried about was me trying to get her off the floor (she's 4' 11" and weighs nothing). All I worried about was the egg on her head where she had hit it on the hospital table. All I can say is thank God we put really thick carpet in her bedroom which cushioned her fall. I sat with her for hours to make sure the bang to her head hadn't caused her any serious injury. I have looked after both parents all of my adult life. We lost dad to Alzheimer's in 2005, though, as those who care for anyone with dementia will know, we lost him long before he passed away. She has asked if it would be better if we put her in a home but I will never do that. She will stay in her home for the rest of her days, loved and cared for. Boy, have rambled on a bit haven't I.
As for the referral Maz, my hero, gave me a print out about requesting a second opinion. I have the right to be treated at any hospital I choose so when I see my haemo this week I will ask that my treatment be referred to the Freeman. Will let you know how it goes and thanks for the support xxxx
I also was diagnosed ET after many examinations by doctor in my country. I'm 28 years old. I haven't get a baby yet. I was examined many times but Now none of doctor in my country can treated for me so that my plts decrease because I want to have a baby. The doctor in here also experience with Hydrea. But I can't stop hydrea 3 months before pregnancy because My Plts increase very fast after stopping drug. I have discussed with my hem but he said he haven't experienced with interferon. I'm so worry. I live in Vietnam. It's very far from MPN experts. I know MPN expert through the research of their and This group. I wish once was treated properly like you.
Hi, I was diagnosed 7 years ago with ET. I too have found GP's do not know enough nor do they seem to want to, understandable given their work load, however I have found that you have to do your own research to find the right person. I did this through the MPN site given to me by a very caring haem nurse to a haematologist who was far to cavalier for my liking. I discovered the brilliant Professor Claire Harrison who is THE expert in this field and I consider myself privileged to be under her care after 2 years in the wilderness!
I wasn't happy with my local haem, his lack of knowledge, care and understanding, so went back to my GP asking for a referral. I had done my research before so I knew exactly who I wanted to be seen by! The referral happened very quickly and I was seen by Clare Harrison within a few weeks, even on the NHS!
I can't say enough how seeing someone with the knowledge of MPNs makes a huge difference to your care and treatment. It does mean that I am out for most of the day, travelling for at least 1.5 hrs each way, and involves me having to organise child and dog care for each appointment, which is monthly at the moment, but it is soooo worth it.
Don't sit back and be fed up with your healthcare, take control and fight for what you deserve. Eventually if you continue to nag about wanting to see someone with more knowledge you will grind them down, and they will just want you off their hands!
O.M.G. I cannot express how much I agree with you. Mine simply says he doesn't know why when I keep telling him about the fatigue, headaches, itching etc. It is so frustrating and really pulls you down. I support any idea that improves our Haematologists knowing so they are all singing from the same hymn sheet.
I can fully understand all your frustrations, I myself have experienced the same thing with my haematology department. We at MPN Voice are doing as much as we can to get our information into hospitals around the country, and I do send out vast quantities of our literature to many many haematology nurses and consultants in order for them to give out to patients, and as you know, we do run regional patient forums to spread the word, we are currently in talks with quite a lot of haematologists who have very kindly offered their time to host and talk at the forums. What we have to remember is that not all haematologists can be absolute experts in every field of haematology, which is vast, it's like GPs, they have to know about so many ailments and it's not really surprising that they are not absolute experts in everything.
If you are not happy with the treatment and information you are receiving from your haematologist the first step is to tell him/her, discuss with them your concerns, more often than not this can help as it gives them a better understanding of what you want to know about your MPN and your treatment, some people don't want to be told everything, some people do, so tell your haematologist how you feel. If that doesn't help and you still feel that you are not being treated properly then ask for a 2nd opinion, this information may help you nhs.uk/chq/Pages/910.aspx?C....
I would also like to tell you all that Prof Harrison does not have a private clinic and does not see patients privately, she only sees people on the NHS.
I see my consultant once a year and have 2-3 monthly telephone appointments with the haem nurse.
This is my choice as after 11 years of E.T. my blood levels are fairly stable and the nurse talks to my consultant before the telephone call.
In December, I saw the consultant and when she asked me how I was feeling, I answered with - I am ok but really a bit fed up with having E.T. The fact that I will have this disease for the rest of life and would have to be on medication long term does get to me sometimes and I worry about it.
She was very sympathetic, reassured me about the use of long term medication and suggested several things to help with itching. She even gave me a prescription for something that I mentioned in passing that should really have been a G.P. issue and sent me for a blood test. I was asked if I would like to continue with the telephone appointment system or could attend the out patient dept more often. Nice to have been given the option. We also discussed the relevance of JAK (I am negative) and Calr (positive). I left, feeling so much better, having made a future clinical appointment with a very nice man on patient reception for December 2016 .
I am writing this to point out that not all haematologists/ hospital units are uncaring.
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