Midlands MPN Specialist

[jillydabrat]

My husband and I are considering moving to the Midlands so we are closer to support from friends. I am nervous about leaving my local hospital haematology care so I am asking if anybody gets care from the John Radcliffe hospital in Warwickshire? Or, what are the hospitals people attend?

[bruddery]

Hi there the John Radcliffe hospital is in Oxfordshire not Warwickshire. Bruddery

[hunter5582]

Would suggest consulting the list and see who is the closest MPN Specialist. mpnforum.com/list-hem./ . If too far for regular care, at least find a good local doc who will collaborate with a MPN Specialist.

[ETphonehome in reply to hunter5582]

This sounds great in theory hunter5582, but when you have a difficult local haematologist who doesn't understand or believe in the need for patients going to see MPN specialists, I can assure you unfortunately it's not!☹️

[hunter5582 in reply to ETphonehome]

I am sorry to hear that you have such a negative relationship with any doctor. Unfortunately, there are providers who put their own ego ahead of the patient's best interests. Competent and ethical doctors welcome a second opinion and value consultation from a more knowledgeable colleague.

Doctors who are difficult to deal with do not deserve to be on your care team. The proper action os to dismiss the doctor and seek care elsewhere. I have done precisely this when the need arose.

Wishing you success in creating the care team of your choice.

[Nickthedevil]

Hi Jill I see Dr Joanne Ewing at the Haematology and Oncology Unit at Solihull hospital. She is lovely and also very knowledgable about MPNs. I changed to her from my local hospital as the haematologist there knew little about ET and dismissed any symptoms. It’s a 66 mile round trip for me now but is definitely worth it. Dr Ewing was recommended by Maz. Good luck with your move. Karen x

[MistyBlue2 in reply to Nickthedevil]

Hi NickI'm also under Jo Ewing (although I see her at Good Hope in Sutton Coldfield) and she is really good.

I'm a PV'er

[Nickthedevil in reply to MistyBlue2]

Hi, I first saw her at Good Hope but we then realised Solihull was easier for me to get to. I really like her.Karen

[Rockstone in reply to Nickthedevil]

I want to know why I was referred to Good hope under Dr Gardener who has now left and I have had 3 different doctors phoning me one which I just could not understand. I needed more hyrdoxy and received 10 phone calls would you believe, 2 off secretary, one off nurse, both saying being sorted, another one off doc then numerous ones off chemist who queried why doctor( who had gone on holiday) had only prescribed 12 a week instead of 14..I knew from previous doc it was 14..what a fuss ..just wanted a box of 100 !! I have not heard of Joanne Ewing but she sounds nice

[Nickthedevil in reply to Rockstone]

Crikey what a mess! My GP prescribes my hydroxy based on Dr Ewings instructions. Perhaps you could ask your GP if they would do the same. You are also entitled to ask for a referral to a specific consultant. Good luck.Karen

[Scottishterrier]

Hi jillydabratMy comment is more to do with your article getting published in the Sunday paper please keep on at them to get it published I live in Scotland and with the help of my msp I kept on at the the health minister to get more mpn clinical nurse specialists and also to get more GPS getting more training in mpn even went to the chief medical officer and also the tory health msp also through his support and it really did work up here hence giving me now the nickname Scottish terrier as kept maz in loop with all my emails to the Scottish government so please don't give up the more people know the better keep the heat on the Sunday papers or even choose some daily papers the more people that know of mpns the better

Best of luck

Stay safe

Scottish terrier xxx

[jillydabrat in reply to Scottishterrier]

Thanks my lovely. It is annoying when piddly, idiotic stories, as in the example of Love Island, takes precedence of the impact of lesser known cancers on people’s lives. I know Cancer52 are not letting this drop so it will get published, it’s just a matter of when.

[Stephen399b]

If you are a bit further south from Solihull I have used Dr Salim Shafeek at Royal Worcester Hospital for 6 years for my ET. He has been fantastic and very supportive. I recently also had a diagnosis of prostate cancer and he helpedus put together a team of urologist and oncologist to work together.

Thoroughly recommend.

Stephen

[jillydabrat]

Thanks everyone, I am writing all these names down so I have names to refer to if we can be moved. Appreciate all the help as usual xx

[Wyebird]

I listened to a female MPN specialist in an MPN forum once. She worked at a Birmingham hospital she was amazing. Ask Maz she will give you a list