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Repair Trial – update

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MDS Patient Support

Important MHRA survey about PPI and clinical trials

The first 2 patients with MDS have been recruited in this exciting new trial for lower-risk MDS.

If you don’t yet know about this trial, please check the articles we have produced, as part of our role as PPI group in this research.

https://mdspatientsupport.org.uk/repair-mds-trial-a-new-clinical-approach-for-lower-risk-mds-patients/

If you are interested in taking part, and think you could be eligible, please discuss this with your haematology team.

Currently only Russel’s Hall Hospital is open for recruitment, but more hospitals will open throughout this year.

Some hospitals may not yet be aware of the trial – so your involvement and request to take part could make a significant difference.

Have your say – MHRA’s public consultation on proposals for legislative changes for clinical trials

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Important MHRA survey about PPI and clinical trials

The MHRA is the organisation that regulates licensing of new drugs in the UK.
They took over from the EMA (European Medicines Agency) since Brexit.
They are now proposing to change a few aspects with regards to clinical trials.
If you have ever taken part in a clinical trial, or considered doing so – please consider answering their survey – it is really important.

MHRA Invitation:

We have just launched our 8-week public consultation on proposals for legislative changes for clinical trials.

We want to streamline clinical trial approvals, enable innovation, enhance clinical trials transparency, enable greater risk proportionality, and promote patient and public involvement in clinical trials.

We would like to hear from the public and patients, clinical trial participants, researchers, developers, manufacturers, sponsors, investigators and healthcare professionals to help shape improvements to the legislation for clinical trials.

You can read more about our proposals in our Press release and consultation document.

Our consultation will close at 11pm on Monday, 14 March 2022.

Patient, Public and Stakeholder Engagement team - Communications and Engagement

Medicines and Healthcare products Regulatory Agency
10 South Colonnade, Canary Wharf, London E14 4PU
Telephone: 0203 080 6000
Email: engagement@mhra.gov.uk
Follow us on social media

MDS UK note:

Our support group has been involved in an increasing amount of PPI work in the last 5 years – shaping clinical trial protocols, advising on Quality of life tools, and reviewing Patient Information documentation.

This work is providing essential recommendations for most MDS clinical trials – in order improve treatment options for MDS patients.
We plan to expand even further on this type of research work.
For this work, we need more people (patients/carers/families) willing to be trained to review such documentation.
If you are interested, or know a patient or carer who could be interested – please email info@mdspatientsupport.org.uk with “PPI” in the header.

He shoots, he scores! He saves a life! Hero England fan!

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This story is now making headlines, thanks to the selfless and generous attitude of Sam Astley, who opted to donate his stem cells instead of attending the England football match!

Sam decided to register as a stem cell donor, thank to our long term MDS UK Patient Support Group member Simon Wilkes, who was diagnosed with the rare blood cancer Myelodysplastic Syndromes several years ago.

MDS Patient Support
MDS Patient Support

After contacting MDS UK, Simon decided to fundraise for us, as well as Anthony Nolan, saving the lives of people with blood cancer, to raise awareness of his blood cancer, and the need for more stem cell donors.

Simon organised several recruitment drives over the years, registering numerous donors, including Sam Astley.
Simon's life was very sadly turned upside down, following the death of his son. Simon and his family heve been holding events in his memory, supporting both MDS UK and Anthony Nolan.

We have since heard that Sam was given tickets by EUFA2020 to watch the final! England football team Huge thank you on behalf of the blood cancer community!

And thanks to Simon for all his support.
https://www.bbc.co.uk/news

 

More on Sam Astley who donated his stem cells on the night of the England football match and Simon Wilkes, who has MDS, and organised a recruitment drive to support MDS UK Patient Support Group and Anthony Nolan, saving the lives of people with blood cancer. So grateful to both for the absolutely amazing support, generosity and selflessness.

Thank you to all the papers and media The Independent BBC News London Evening Standard Daily Mail Good Morning Britain for running this amazing story.

And vivo, vivo sponsors for coming up with tickets to the final!

Gary Lineker thanks for all the support!

Please give this amazing couple a huge welcome England football team. He is saving lives for blood cancer.

And renewed thanks to Simon Wilkes who has the rare blood cancer MDS Myelodysplastic Syndromes and initiated the recruitment drive!

'Read more about the fabulous support from Simon Wilkes to MDS UK. Linking his love for football, especially Stourbridge FC, and the need to support smaller charities like MDS UK.

As well as raise awareness for stem cell donations with our brilliant colleagues from Anthony Nolan.'

More on Sam Astley who donated his stem cells on the night of the England football match and Simon Wilkes, who has MDS, and organised a recruitment drive to support MDS UK Patient Support Group and Anthony Nolan, saving the lives of people with blood cancer. So grateful to both for the absolutely amazing support, generosity and selflessness.

Thank you to all the papers and media The Independent BBC News London Evening Standard Daily Mail Good Morning Britain for running this amazing story.

And vivo, vivo sponsors for coming up with tickets to the final!

Gary Lineker thanks for all the support!

Please give this amazing couple a huge welcome England football team. He is saving lives for blood cancer.

And renewed thanks to Simon Wilkes who has the rare blood cancer MDS Myelodysplastic Syndromes and initiated the recruitment drive!

'Read more about the fabulous support from Simon Wilkes to MDS UK. Linking his love for football, especially Stourbridge FC, and the need to support smaller charities like MDS UK.

As well as raise awareness for stem cell donations with our brilliant colleagues from Anthony Nolan.'

MDS Patient Support
MDS Patient Support

Simon (who had MDS), wife Lynn, and sons Ben – as well as Olly (who very sadly took his own life a few years ago).

The family has been supporting and fundraising for MDS UK and Anthony Nolan for years.

New animation to explain MDS to all

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Please help us support more patients!

Donate on MDS UK JustGiving Page

This ground-breaking animation aims to raise awareness of MDS (Myelodysplastic Syndromes) and create an accessible story for newly diagnosed patients and their loved ones, signpost them to help and support and raise funds for MDS UK.

Can you help us distribute this clip in hospitals waiting rooms?

Help us to help you and others: If your haematology waiting room has an internal TV system in place – please ask the Waiting Room Manager if this information cartoon could be featured on their TV ?

Ask the waiting room manager to contact us on

Email: admin1@mdspatientsupport.org.uk

Reference: MDS-Myelo’s Hope Infocartoon

Please help us fund MDS UK research work:

  • We would aim to use donations to help us cover the costs arising from our involvement in, and contribution to MDS-related research.
  • MDS UK staff, committee members and expert patients are involved all year round in different aspects of research, including addressing the issue of access to MDS treatments.
  • We regularly provide input to Patient and Public Information (PPI) work, for both commercial and non-commercial clinical trials. We are financially compensated for some of this work, but not all.
  • This wider research and access work takes time, effort and energy, and therefore needs funds.
  • Without this work, ethics boards would not approve trials, EMA and NICE processes would be delayed, and access to drugs might be compromised. And, above all, the voice, needs and wishes of patients would not be heard or considered.
  • Additionally, having funded one PhD research project (at Queen’s University, Belfast), we would like to consider funding more direct research, should our funds allow us to do so in future.
  • If you have found this topic of interest and would like to support us in such work, we would welcome any donations, however small. If you can, please use Gift Aid to enhance the value of your donation to us by 25%, at no additional cost to yourself.

Through our input to the European Medicines Agency (EMA), and National Institute of Clinical Health and Excellence (NICE),we have been heavily involved in work undertaken in order to make MDS drugs accessible to patients.

This type of work helps to ease and speed up the process of licensing of drugs, and their financial approval for use in the NHS.

Patient groups like us play an absolutely crucial role in this area, and can make the difference between a drug being accessible, or not.

Please help us support more patients!

Donate on MDS UK JustGiving Page

World Leukemia Day on 4th September

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Today, 4th September, together with the worldwide blood cancer community, MDS UK is marking World Leukaemia Day.

MDS Patient Support

MDS patients can be affected by leukaemia too:

10% of low-risk MDS cases do progress to Acute Myeloid Leukaemia

30% of high-risk MDS cases do progress to Acute Myeloid Leukaemia

In those MDS cases, it is then called secondary AML, as opposed to de novo AML, when someone is suddenly diagnosed with acute myeloid leukaemia.

To help raise awareness of leukaemia, you can get involved by taking spotty selfies, and sharing on social media.

Here is also some background on leukaemia, as well as a couple of videos, explaining some symptoms, which can be particularly relevant for our MDS community.

https://www.worldleukemiaday.org/what-is-leukemia-1

Take a spotty selfie:

Dig out your spotty clothes and share your ‘spotty selfie’ on social media with the hashtag #WLD20 on September 4th to show your support.

Facebook:

Show your support for World Leukemia Day by using our Facebook Frame. All you have to do is follow these easy steps…

  •  Go to your Facebook profile and click edit on your profile picture
  •  Click add frame
  •  Search for World Leukemia Day
  •  Select our Facebook frame
  •  Click Use as Profile Picture to save
  • And you’re done!

Tweet:

#WLD20 #WorldLeukemiaDay

We count on you to raise awareness in leukemia on 4th September !

MDS Patient Support
MDS Patient Support
MDS Patient Support
MDS Patient Support

Fever or night sweats?

Weak or short of breath?

Thanks for your support.

Stay vigilant, don’t hesitate to report symptoms.

Stay safe

MDS UK

Is it safe to go to hospital? An update for MDS patients on their treatment during Covid

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NHS services are gradually returning back to some normality

However it won’t be quite the same as pre-covid times.

We asked the MDS experts to explain what patients may expect in the weeks and months to come.

And – to remind all patients that despite covid, isolation, shielding  and perhaps not seeing your usual clinical teams, it is still VERY important to communicate any changes in symptoms to the relevant clinicians.

Teams are there to assist and treat.

It is safe to attend hospital.

There are Covid free zones and hubs set up to ensure all risks are minimised as much as possible.

Please do not ignore symptoms, do not delay contacting the GP, nurses, haematologist, or A&E if the need arises.

It is safe to attend hospital.

Watch our clip with Prof Bowen explaining what to expect regarding your MDS treatment

Many thanks to Prof Bowen, and all haematology teams across the UK for their great care in such difficult times.

Keep safe, stay well – physically and emotionally!

MDS UK team

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page

Make Blood Cancer Visible Campaign in Edinburgh from 24 to 29 September

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Mon 24th - Sat 29th Sept: Waverly Mall, Edinburgh, EH1 1BQ

“This last week of September 2018, the Make Blood Cancer Visible campaign has moved to Edinburgh, to highlight the need for better blood cancer awareness in Scotland specifically.

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MDS World Awareness Day 25th October – Flash Mob and more!

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AMAZING FLASH MOB IN TWICKENHAM TO RAISE AWARENESS OF MDS

To celebrate MDS World Awareness Day a cheerful bunch from the Bearcat Running Club  stormed the Cabbage Patch Pub in Twickenham and started dancing to the tune of Gloria Gaynor "I am what I am"!! WATCH THE VIDEO:

Such was the impact that people were reported to donate spontaneously after the dance, without even been asked!
 
Our member and Oxford Group Coordinator, Claudia Richards, says in our Facebook group page:

Always wear your MDS UK T-shirt with pride - you never know when someone will give you an unexpected donation (as happened to me as I walked up Twickenham High Street after the Cabbage Patch 10 yesterday!)

CABBAGE PATCH RACE FOR MDS UK: NATIONWIDE COVERAGE!

The 10-mile race Cabbage Patch Race by Kate Carter The Running Blog:
One of my favourite autumn races took place yesterday - the Cabbage Patch 10 miler. I can’t say I did it much justice on very weary post-marathon legs, but as always it was a great run, through Twickenham, Ham and Richmond, along the river and past some rather bemused dog walkers and startling innocent bystanders.

True to form, the race was won in the sprightly times of 49min 42sec and 54min 46sec. Yes, for 10 miles. I missed the awards ceremony, which is a shame as the look on the winners faces (if they’ve not done it before) when they are presented with an actual cabbage is usually worth staying for. The prize money for this local race is very generous, and the times always impressive - one Mo Farah is a former winner - but my own particular congrats to my teammates Stephen and Nick, who both came in under an hour.

In addition, one of the runners, wrote a great blog mentioning MDS World Awareness Day!. She says:
Today, 25th October 2017, is Global MDS Awareness Day and it’s time to spread the word about this little known form of blood cancer. So, what is MDS, or Myelodysplastic Syndromes?

According to the MDS Alliance, MDS are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. Approximately 2,500 new cases of MDS are diagnosed in the UK every year but it is thought that many go unreported. Although most people who develop it are over the age of 65, it can strike at any time.

To mark MDS World Awareness Day, Caitlin Limmer, Patron of the MDS Patient Support Group charity, organised a ‘Flash Mob’ on a busy street in Twickenham (just down the road from Virgo’s Richmond office), whereby the Bearcats running club which she heads up (she’s one busy lady!) broke into a fabulous dance routine, all wearing their distinctive, red MDS t-shirts. This took place right after a popular local 10 mile race, the Cabbage Patch 10, so there was a good crowd of surprised athletes assembled to watch the action unfold. You can check out the video here.

Bravo, Caitlin and the Bearcats, we love your work!

MDS AWARENESS WALK ON THE 25TH

On the 25th of October, our tireless patron Caitlin Limmer, took more people - and a dog - on a leisurely MDS Awareness walk.

Another fabulous event, that we mean to turn into an MDS AWARENESS tradition!!

MDS Patient Support

MDS Patient Support

MDS Patient Support

Southampton MDS Patient Support Group

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Location:
NOVOTEL SOUTHAMPTON,
1 West Quay Road,
Southampton SO15 1RA

Email:
southamptongroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

Upcoming Meetings

Our Southampton Group is taking shape!

We are very grateful to volunteers Andy Scott and Philip Dinn who are assisting MDS UK with the running of this new local group. We are looking for 2-3 more people to assist – so please do contact us if you’d like to help out for our 3 meetings per year.

To date, meetings were taking place in the Novotel by the train station, but we are also looking for a permanent meeting location for this group – and will be posting details on our website soon.

We are also extremely grateful to Southampton clinical staff – CNS Dawn Cousins, Dr Chris Dalley and Dr Srinivasan Narayanan who will continue to be regular contributors to this local group.

Southampton Local Group meeting - 26th February 2020

MDS Patient Support

Local team:
Andy Scott, coordinator (and carer)
Philip Dinn, coordinator (and patient)

Clinical team:
Dawn Cousins, CNS
Alison Lyons, CNS
Dr Chris Dalley
Dr Srini Narayanan

Our renewed thanks to coordinators and staff for making this group possible.
And congratulations to all involved and attending for creating a very helpful, inviting, honest and warm atmosphere.

Please attend this group and tell your clinical staff about it, so that other patients may benefit as well.

Philip Dinn's Story - Group Coordinator and Patient

In March 2017 I had a routine blood test for diet-controlled Type 2 diabetes. The result was a shock as it revealed that I was neutropenic. A very rapid referral to Southampton Hospital and a bone marrow biopsy confirmed the worst. Luckily for me It Dr Chris Dalley who made the prognosis and offered me the chance of a cure with a stem cell transplant. It all happened so fast that I really did not understand what was happening other than it was totally out of my control and I guess I was resigned to that.

I had been given information on MDS UK Patient Support, but I was signed up to trail AML18 and in hospital for my first round of chemotherapy before I had any chance to understand what was on offer.

On reflection that was when we needed to hear stories of other patients. The professional medical staff were wonderful, and I was building up a library of information on the various drugs that were being used but I still lacked any contact with other MDS patients, or my wife Fiona with any other carers.

By the time I had my second round of chemotherapy I was more aware of the work carried out by Sophie and the whole team, and a donor had been identified. So after successful remission of the original problem then I was all set for the stem cell transplant when an infection became evident that manifested itself as a cyst in my liver. So, it was back into hospital my third prolonged stay. Further treatment continued at home, but it was not until June of this year that everything came together, and I had my stem cell transplant.

My only regret was that it took me so long to understand the full support on offer from MDS UK, but, now that I have, I hope that I can help to help others.

Photo of our local group in Southampton at the meeting on the 10th Oct 2018

MDS Patient Support

Patients in the Wessex region can also benefit from additional support and services, provided free of charge by the Wessex Cancer Trust.

www.wessexcancer.org.uk

At all of our free Cancer Support Centres, clients are welcomed by our volunteer befrienders who are equipped to provide information, support and a listening ear. Our team of specialist counsellors are there to help deal with the emotional impact of cancer and our complementary therapists aim to improve well-being, help with pain management and increase self-confidence.

MDS UK Online Forum

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

Enter the Forum

Realising the potential of haematology nurses and allied health professionals

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Realising the potential of haematology nurses and allied health professionals

The Haematology Institute Nurses and Allied health Professionals Group is hosting a one day event on 10th July 2017 at the Robens Suite, 29th floor, Tower Wing, Guy’s Hospital London SE1 9RT. 

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