Newcaslte Patient Forum?

[P-O-T-S]

Hi Everyone,

Is anyone going to the Newcastle Patient forum in October, I'm interested to know if there many people locally who have the same or similar disorder?

If so has anyone attended, what are they like is it a full 5hrs of Talks with a few short breaks?

Thanks

Barry

[EleanorPV]

Hi Barry, I’m not local but have been to 3 Scottish forums. All forums are different with local speakers. Usually a talk from a local haematologist and a specialist nurse. Then a break for lunch. Also time for us all to break into our diagnosed groups for an in-depth discussion. All very informal and hugely informative. Hope this helps. Eleanor

[P-O-T-S in reply to EleanorPV]

Thanks Eleanor it sounds very interesting, looking forward to it now

[Phelpsy]

Hi Barry yes I’m Local

Diagnosed with ET 5 years ago now

This will be my 3rd Meeting at

Newcastle I’ve attended

Always very interesting with good advice also .

Eleanor has given you a rundown of the afternoon,

hope see you there

Pam .

[P-O-T-S in reply to Phelpsy]

Thanks Pam, Excellent, I was wandering how many people in the Newcastle area attending would be going. This will of course be my first year, I hope to catch up with you and many others. thanks for replying.

[Juliet46]

I’ve put my name down. Haven’t been to a patients forum before !

[P-O-T-S in reply to Juliet46]

Excellent, hope to see you there Juliet46

[Trocken]

I’m going too, never been to one before but looking forward to meeting others and hearing more! Katy

[P-O-T-S]

Excellent trocken its nice to know that people from this site will be going. I hope to catch up with you there

[MariaB27]

Hi Barry I was diagnosed just before last years meeting. I was so pleased I attended

as I met some lovely people. Its a very informal meeting and you get time to talk to

others with the same problems. Its a pity we don't have more social occasions throughout

the year. Look forward to meeting you. Ivy

[P-O-T-S in reply to MariaB27]

Hi Maria,

Excellent. It does sound good and I agree, maybe something that could be arranged on from the forum.

Looking forward to meeting you to Ivy

Barry

[Sand-Dancer]

Hi Barry. I will be there! I am from South Shields. Lesley x

[P-O-T-S in reply to Sand-Dancer]

Hi Lesley, Nice to meet you, My partner is from Shields, we currently live in Whitburn though. will be nice to meet you at the Forum. I'm sure that are many more people who suffer with MPN's close by but aren't aware of such sites or not interested. shame!

Look forward to meeting you at the Forum.

Barry

[Sand-Dancer in reply to P-O-T-S]

Looking forward to merting you too Barry. We lived in Tynedale Rd for 19 years where did your partner live? Anyone born in South Shields is known as a Sand Dancer as you will both know - hence my profile name 😊. Lesley.

[P-O-T-S in reply to Sand-Dancer]

Sand Dancer's indeed, we are smack bang in the middle of Sand Dancer and mackems living in Whitburn. My partner Jackie lived in Highfield Drive just around the corner from you. You may even know each other

[Mazcd Partner MPNVoice]

Hi Barry, the actual forum starts at 1.30pm, after we have all had a nice lunch, then there will be a couple of talks from consultants, 15 minutes each, a couple of talks from patients/family member, again 15 minutes each, a 30 minute Q&A session, break for a cuppa and cake, then we have an hour for the breakout groups, where we split into 4 groups, one for each MPN and one for family and friends, where you can ask questions and swap tips etc. Kind regards, Maz

[pontygirl]

Hi Barry

I will be at Newcastle I'm quite new too diagnosed ET, 23 March shocked out of my boots diagnosed with MF 18 May. Like you new and curious I'm traveling up from West Country.

Information is power to deal with our situation.

Mary

[wendycu]

I went to a Newcastle Forum about 4/5 years ago. Came out upset as I wanted to ask questions about E.T, the consultant and Doctors said they couldn’t answer them as they were my own doctors, I had to wait till my appointment at the hospital.

I’ve never gone back to one.

[P-O-T-S in reply to wendycu]

Hi Wendy,

I'm sorry to hear that you had a bad experience and I sympathize, but at the same time, I understand the Consultants point of view as they don't have all the data or a full picture to give advise and incorrect advice based on assumptions could be dangerous!

I hope you do go again one day and don't let that one bad experience put you off.

All the best

Barry

[JaynieQ]

Hello all

I’m going to Newcastle too, hope to catch up with you all there, especially Pontygirl! 😊

[P-O-T-S]

Cool, it would appear quite a few of your lovely folks are going. The misses has now decided that she would like to come along as my supportive partner which is great. We hope to meet up with you all there and make some new friends.

Barry