Manchester Local Group

Manchester Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

Set-up after our well attended full day Manchester Forum with Dr Mike Dennis, the Manchester local group is led by patient Peter Threader and 3 further patients and carers.

Due to schedule meetings every 3-4 months between 4pm and 7pm

Location:
The Hough End Centre
GMP Sports and Social Club
Mauldeth Road West
Chorlton-Cum-Hardy
Manchester, M21 7SX
Find it in this Map

Email:
Manchestergroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

MDS UK Patients Forum

The messages can be read by anyone as a guest user. If you wish to respond or write a message you will have to register

Take Part In This Survey And Help To Create Better Tools For Patients

Thanks to the latest improvements in cancer treatment many more cancer patients are now able to live with their condition.

As a chronic illness, cancer requires long-term watch, maintenance and treatment and patients and their families need to manage their own care.

The iManageCancer project is creating intelligent, fun new ways to allow patients to manage their lives from their mobile phones.

Now they are asking for your help.

This month, they have launched a survey aimed at healthcare professionals, patients and the general public to find out what they'd like to see if they used a personal health record online.

The survey is available to take by clicking here

Everyone can take part, and the more, the better; whether you are comfortable with technology, or not so much.

The results will help to create better tools to help people with cancer, so please to share this with everyone you know!

 


MDS World Awareness Day – 25th of October 2015

2015 MDS World Awareness Day: Video Stories

25/10/2015
Some of our true champions for MDS awareness have shared their stories with us. Watch their video clips and share them in support of MDS World Awareness Day 2015!

Emma Paine: What happens when you need a second transplant?

Emma is an MDS patient.  She had a first stem cell transplant in 2011 – and recovered well.  Until now.

She is currently in hospital having chemotherapy and urgently needs a second transplant.
BUT – funding for second transplants is being revised in the UK – due to “cost-effectiveness” issues.
18 months ago, Emma would have received her potentially life-saving transplant without a problem.
Given the current NHS financial crisis, and new clinical data on the success of 2nd transplants after a relapse, the Dept of Health has tightened the rules relating to this procedure – and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)

To date it is not certain whether Emma will receive the transplant or not.
Click here to follow Emma blog about her experience and her battle to be granted a further chance to live: Emma’s Fight against MDS

Raising awareness of mds day #mdsworldawarenessday #mdsukpatientsupportgroup

Posted by Emma Paine on Sunday, 25 October 2015

Olivia, Tilly and Ellis Hepburn make an appeal

Olivia, Tilly and Ellis, MDS super heroes and children of Lisa and Gavin Hepburn, are making an appeal for people to donate blood and stem cells to save lives of people like their Dad, who has MDS.

Lisa told us: “Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware. We are so grateful to the person that gave Gavin his donated bone marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too…”

Their wonderful clip has already been viewed over 12,000 times on Facebook. Please keep sharing it! Thank you – on behalf of the entire MDS community.

Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware . We are so grateful to the person that gave Gavin his donated Bone Marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too …

Posted by Lisa Hepburn on Sunday, 25 October 2015

 

 

 

5 ways you can help to raise awareness about MDS

We are asking all patients, families, clinical staff, supporters to post photos or short video clips of themselves on all social media platforms, to raise awareness of this rare blood cancer MYELODYSPLASTIC SYNDROME.

 

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All our colleagues and friends worldwide will be doing the same and will post messages online on the 25th October. See our Facebook page for more clips, and photos and the MDS Alliance website for links to all international groups marking MDS Day.

 https://www.facebook.com/MDS-UK-Patient-Support-Group-123295287687778/

www.mds-alliance.org


1. Record and share a video clip. You can use the message below as an example:

Hello – my name is ……. I am an MDS patient.
(or I am an MDS Supporter – son/daughter/spouse/brother/sister/parent/friend/colleague/neighbour of an MDS patient).
Please share my message in support of the rare blood cancer MyeloDysplastic Syndromes – and the MDS World Awareness Day on 25th October.
Please support the MDS UK Patient Support Group and the international MDS Alliance.
Help to register more stem cell donors and blood donors.
Be a star.
Thank you.

2. Share these messages of MDS patients and supporters with your family and friends

It’s #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup

Posted by Jenny Milne on Saturday, 24 October 2015

 

 

3. Share all photos and videos using the hashtag #MDSworldawarenessday

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4. Organise a coffee morning or tea afternoon to show your support and use the posters below

PDF poster MDS WAD POSTER A4 Oct2014

PDF version: WAD2015

Take your photo with the posters clearly visible!

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5. Share your photos with the poster. Some lovely ones below

 

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World Awareness Day 2015

 

World Awareness Day 2015

 

 

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100 Q&A book on MDS – revised edition

100 Q&A book on MDS – revised edition

WP_20150728_009We now have a brand new revised edition of the really helpful 100 Questions & Answers book on MDS available from our office – free of charge to patients.

Some of you may have been given the initial 2008 edition, which we distributed a few years ago – and was extremely popular amongst our members.

For those of you who don’t know it – this is a patient friendly book on MDS, providing detailed information on several aspects of MDS, including chapters on :

• What is MDS?
• Is it a cancer?
• How is MDS diagnosed?
• What’s the best treatment for me?

This brand new version was published in July 2015, and contains all up to date information, including the revised MDS prognostic score – IPSS-R.

This revised version is fully endorsed by MDS experts, the MDS Foundation, the MDS Alliance, and or course MDS UK.

Please note, as this is a publication written for a USA patient audience, some of the drugs may not yet be available in the UK/Europe and some of the measurements for blood counts may differ.  Please contact us if you if you have any queries.

As previously, we will be distributing the book at all of our regional and national patient meetings, and on request via our office.

Display copies for your hospital

We will provide a display copy at all major hospitals, alongside our leaflets and newsletters.  Please let us know if you’d like to have a display copy for your hospital – so that more patients can take advantage of the information.

WP_20150728_018As a not for profit organisation, MDS UK was very kindly given a price discount by the publishers – Jones & Bartlett Learning – for which we are extremely grateful!
As we  are offering the booklet for free to patients, we still have to raise some funds to purchase further copies.
If you are able to help make this booklet available to more patients, please consider donating towards this project via this specific Virgin Money Giving page:

Coming up shortly – work in progress 🙂

 


Free donations by shopping