Second opinion

[Jo_Ward]

Hi everyone in taking my mum to my local hospital in Barnsley South Yorkshire on Wednesday and im considering asking for a second opinion,

She was diagnosed with pv and high platelets on Monday 12th Feb, a shock to say the least.

Im just not sure if the hospital will be offended by this so can i ask for advice on how to approach this and also do i have to tell them where we want to go or do they decide and tell us where they are sending us?

Also can anyone recommend a hospital/heamatologist? I will take mum anywhere!

Just one last thing once we have had our second opinion do we continue treatment with our second opinion or go back to our local hospital?

Thank you in advance x

[Connie46]

Hi Jo,

You can most certainly ask for a second opinion and go wherever you choose for this. No hospital should be offended by this and you have every right to do so. I did this very thing because I was getting conflicting information from my local hospital.

What happens now is that the consultant I sought the second opinion from draws up my treatment plan and on his instructions this is carried out at my local hospital so that I don't have to travel too far. I am currently having to have my blood tested every two weeks and having venesections when required. I have a crossover between PV and ET and have high platelets and high haematocrit.

Your Mum is fortunate to have such a caring daughter who is willing to see that she gets the best treatment. I sought my second opinion from Guy's Hospital in London but I see that you are in the north of England so I expect you would need to find a consultant a bit nearer to home. Perhaps someone on the forum who comes from your area can help you with this.

I wish you and your Mum well and and hope that you can find a suitable consultant who is based not too far away from you.

Kind regards,

Connie

[Jo_Ward in reply to Connie46]

Awe Connie if i had a response in my head yours would be it! Thank you so much!!

Right least say i know which hospital i want to take mum to should I get in touch with them or will our current hematologist see to this? X

[Connie46 in reply to Connie46]

Hi Jo,

I went to my GP and she wrote a referral letter to the consultant at Guy's Hospital.

Good luck!!!!!!!!!!!!!

Kind regards,

Connie

[Timjonze]

As someone who recently asked for a second opinion I would very much advise doing so. I got a different interpretation altogether from my second hospital - see my opening post from this morning for the full dramatic story! I’d research where you went to go beforehand and make sure it’s an MPN specialist you see. You have the right to choose. Try and contact the secretary of the doctor you want to see in advance. I know UCH and Guys are good in London but you may want to continue treatment at the second place (which is your right to do so) so I’d advise trying to find a specialist closer to home if possible. You might be required to attend there regularly, at least at first. Don’t worry about offending anyone - second opinions are valuable when it comes to such complex disorders. You can always decide to stay with your original doctor if the second opinion reassures you of their diagnosis and treatment plan. Good luck with everything!

[Jo_Ward in reply to Timjonze]

That's a great help thanks so much 👍

[amhann]

Hi Jo

Just to say prof Harrison at guys is ‘main lady’ when it comes to MPNs, but I believe that Tim Somerville at Christie’s Manchester is a specialist - soz I can’t be super helpful on this, but hopefully someone on the forum who attends Christie’s can let you have more info.

Maz who is coordinator on MPN voice can also perhaps point you in a direction.

Good luck

Anne-Marie

[Jo_Ward in reply to amhann]

Thanks Anne-Marie ive called Christies and spoken to his sec she says he would be happy to see mum so i will ask at her app today, i will keep you posted.

Thanks again Jo x

[mhos61]

Hi Jo,

Welcome to the forum. You’ve had some great advice.

Guys and Christie’s have already been mentioned. If you don’t want to travel too far, Professor John Reilly at Sheffield Hallamshire specialises in MPNs. It is awhile since I was given that information, so you better check he is still there.

Mary x

[Jo_Ward in reply to mhos61]

Hey thanks for your advice,

Dr Reilly has recently retired and a new chap is in his post as he is only a new MPN specialist in going to ask for mum to be referred to Christies as the proof there is actually a pv champion.

Thanks again Jo x

[mhos61 in reply to Jo_Ward]

Well done in your research Jo. Your Mum is so lucky to have you.

Mary x

[Jo_Ward in reply to mhos61]

Hi Mary

I love my mum so I'm going to do anything I can to keep her well we've been to the hospital today and I've told them I want a second opinion with Dr Tim Somerville at Christie's Hospital Manchester they have said that they will arrange this I also told them that we are more than happy with the treatment that they are providing for us I just felt I wanted to speak with someone who specialises in this field and they were absolutely fine the nurse at Barnsley Hospital Kelly is absolutely amazing and I wouldn't want to go with anyone else to be honest I just want to speak to someone who knows more than mist

thank you for your words of wisdom and your support it genuinely does mean loads

Jo x

[Skye333]

Hi Jo it’s lovely to see you have decided to ask on here. I saw Professor Harrison too and was so pleased I did. After going to a forum in Leeds I decided I’d like my treatment there. The Prof did all the transferring for me. I’m so glad I did. Not far to travel and I have much more confidence in them. I’m sure someone will come up with a specialist near you. If you could get to Leeds they are amazing. Good luck

Janet x

[Hidden]

Ask Maz for details of one local to you, she provided me with details. There are a couple at Manchester which isn’t too bad for you

Gerard

[Jo_Ward in reply to Hidden]

Hi Gerard I have been to the hospital today with my mum and Express our Desire for a second opinion I also phoned Christie's Hospital in Manchester and spoke to the secretary of Dr Tim Somerville I have asked to be referred there so I can take Mum for a second opinion to Manchester I'm not expecting there to be anything different from what they have told us at our local hospital at Barnsley but because this is so rare I just felt speaking to someone that specialised in this field might be better.

Many thanks for your support Jo

[Hidden in reply to Jo_Ward]

Well done Jo, piece of mind is important.

Gerard

[PhilReade]

Hi Jo best hospital I’ve found is the Christie hospital Manchester Professor Sommervaille is a top MPN specialist

Not sure where your located the other is Guys in London

Regards

Phil