Hope it makes a difference

[jillydabrat]

Hi MPD family,

Hubby and I had a final meeting with Kay from MacMillan CC regarding our experience from symptoms, diagnosis and treatment. We were told that the story we told is so familiar but in the case of MPD's she found the lack of knowledge between the health professionals quite unbelievable. She had taken my advice and looked up this site and she said what we all think, that she found the information on here invaluable and appreciated the support it was offering everyone, whatever their form of MPD. She has taken our information which will become part of a larger study regarding the communication or lack off between cancer patients and their health provider. This is an ongoing study so I hope we can make a little bit of difference.

After seeing Kay we walked around to the MacMilllan Information clinic who, surprise, surprise, knew nothing about MPD's so i asked the lovely volunteer who I was speaking to if they would like a poster and information to display and they were very keen so I will be knocking on Maz's door again, bless her. I wanted a support group for my hubby to attend as everything is loaded on to him but he has nobody to talk to.

Can't wait for Monday now when I finally get to see Dr Plews, the first person in a year who should know what she's talking about. God bless MacMillan xx

[Mazcd Partner MPNVoice]

Hi Jilly, I have just replied to your request for more leaflets, well done you, thank you so much, I will get a parcel sorted out for you. And I have said in the message but also wanted to put it on here for everyone to ready that your husband, or anyone's partner, family member or friend, can have a buddy to talk to if that would help, we do know how difficult it can be for those around us to cope with us and our symptoms, let's face it, it's hard enough for us to cope and understand it and we have the MPN, so for those around us it can be very daunting, trying to cope with how we feel and the moods and the pain and discomfort, so if they can speak to someone it can really help them to help not just us, but themselves as well, so if any of your partners etc would like to be put in touch with a buddy then please email me at [e-mail] and I can send them the details. Maz

[jillydabrat in reply to Mazcd]

thank you, thank you lovely lady. Hubby jumped at the chance of a buddy and I would be so happy for him to have someone to talk to as he is not just my carer he is doing more than his share in looking after mum as well. I thank God for the day I was guided to this site, it has changed our lives for the better, bless you xxxxx

[Tinkerbell13]

Well Done, Jill, you have already achieved such a lot and looks like your initiative is going to help vast numbers of people in the future....keep up the good work! Best regards, as ever, and a big thank you, too. Tinkerbell13

[jillydabrat in reply to Tinkerbell13]

thanks Tinks, you are such a support xxxx

[Tinkerbell13]

Always a pleasure! T xx

[Stevesmum42]

Well done to you for being so proactive especially when you have a lot to deal with yourselves. Thank you, this additional knowledge will benifit all of us .

Thanks again Best wishes Sandy x

[linds]

Well done Jilly, best wishes to you and your husband x

[funnyfeet]

Well done you, your actions are going to benefit many more people going forward. You are an inspiration. Xx

[Hidden]

Well done for all your efforts to raise awareness of MPN's it is appreciated and am sure will be of great benefit and improve services for the future. I wish you best of luck with you appt with Dr Plews, I hope you finally get some answers / help you need. Let us all know how you get on best wishes Liz xx

[jillydabrat]

Thank you everyone, I have never felt such a determination to raise awareness of a subject than I have since finding this site. The plight of the people who live with this horrible condition really touched me, especially the lack of knowledge so, yes, I guess I am going all out to communicate with as many health "professionals" that I can. I am sure most major hospitals in the country have a MacMillans help center attached to it and/or a haematology unit so why don't we challenge ourselves to put an MPD Voice information poster into each and every one. I have asked Maz for another information pack and I am going to photocopy and laminate the poster and try and put it in every relevant place I can find and who will allow me to do display it. Come on everyone, accept the challenge.