2nd Stem Cell Transplants Funding Re-instated Thanks to Your Support!

NHS England will fund 2nd stem cell transplants for patients whose blood cancer relapses

Since NHS England initially announced in December 2016 that it wouldn’t fund second transplants, more than 25,000 people joined our campaign to reverse the decision.

Thanks to every single person that signed the petitions, and wrote to their MPs. We all did it together.

Thanks to colleagues at Anthony Nolan, all other blood cancer charities, Emma Paine, Mark Tami MP, the APPG on Stem Cell Transplant, many MPs and clinicians, Sasha Jones and friends.

An extra-special thanks to the Hepburn family, who showed so much courage and campaigned selflessly after Gavin's death. We owe them a huge debt of gratitude.

Second Stem Cells Transplant Campaign

NHS Announcement in detail: routine funding for 2nd stem cell transplants for patients who relapse more than a year after their 1st transplant

On Friday 24 February NHS England announced that they will routinely fund second stem cell transplants for patients who relapse more than one year after their first transplant. This replaces the announcement in December 2016 that second stem cell transplants were ‘not currently affordable’.

Every year, a small number of patients with a blood cancer or blood disorder who have already received one stem cell transplant from a donor will unfortunately relapse (their disease will come back). For some of these patients, their doctor might recommend a second donor stem cell transplant. It is estimated that 16 to 20 people every year in England will need a second transplant because their blood cancer or blood disorder has relapsed.

This decision affects a small number of patients in England who:
• have received a first donor (allogenic) stem cell transplant;
• were in complete remission;
• subsequently relapsed more than 12 months after their first transplant; and
• their doctor now recommends a second stem cell transplant.

This decision does not affect patients who suffer graft failure (their first transplant fails) or patients who have received a first transplant using their own cells (autologous). This decision only affects patients in England; patients in other parts of the UK are not affected.

Why does this decision only apply to patients who relapsed more than 12 months after their first transplant?

The recommendation of clinical experts is that patients who relapse more than 12 months after their first transplant have the best chance of a successful second transplant. Unfortunately, there is weak evidence for the effectiveness of second transplants for patients who relapse within a year of their first donor transplant.

Read More: Blood and Marrow Transplantation

Join the Register!


Young patients denied second chance for life: Update NHS England reversed their decision

Blood Cancer – the issues around the highly complex topic of 2nd stem cell transplants.

Early in 2016 a MDS patient was denied a potentially life- saving 2nd bone marrow transplant despite showing a good chance of being cured by this 2nd treatment.

After 4 months of waiting, spent in and out of hospital, while NHS England turned down the treatment again, following an appeal, this patient contracted a severe infection and died.

He was only 39 years old – and a father of 3 young children.

End of 2016:

A mum with 2 young children is finding herself in a similar situation. She needs a 2nd transplant after a relapse of her blood cancer, Acute Myeloid Leukaemia.

The request for funding was denied just recently – meaning she has 2 choices: find the £100k herself to pay for the transplant or accept she may only have months left to live.

What is the background behind these appalling situations?

At the end of 2013, NHS England took the decision to stop funding allogeneic stem cell transplants (allo HSCT) for blood cancer patients who suffered a relapsed of their disease – after an initial successful transplant.
Expert clinicians requested a review of this decision, which did happen.

But in July 2016 NHS England came to a decision and stated they would no longer routinely fund 2nd allo HSCT’s – based on the evidence and success rates. These treatments were no longer deemed to be “cost-effective” for the current financial situation of the NHS.

It is true that overall, outcomes of 2nd transplants are not great – on average.
But transplants, types of blood cancer, sub-types, patients are very unique and these situations are rarely comparable.
Not only is the need for a 2nd HSCT rare, but not many patients would be so eager to undergo a 2nd transplant. Nor would haematologists be willing to perform one if there was not some good chance it would save someone’s life.
Clinicians and patients understand the issue of quantity versus quality of life.

Ever since 2013, haematologists deciding their patients would benefit from a 2nd HSCT, would have to make a compelling case for it – via an IFR (Individual Funding Request) which would then be submitted to an NHS England IFR Panel.
The IFR panel would then discuss whether the case was exceptional enough to agree the funding.

What does that mean in practice and in actual figures?¹

A bone marrow transplant costs about £100k per patient on average.
Between April 2013 and June 2016, only 19 requests for a 2 nd HSCT were made in all of England:

5 were declined by the IFR Screening team (the case was never seen by the IFR Panel)
5 were declined by the IFR panel
3 had “other outcome” (sic - as per NHS FOI answer)
6 were approved – this means just 2 cases per year. Total cost of approx £200k.

The 2 recent patients mentioned have been denied this chance – to save NHS England £200k.

It is crystal clear that the NHS cannot afford to treat everyone whatever the cost – so let’s set aside the
emotional and humanity argument.

It is the money side and management of NHS funds we take issue with.

NHS England refuses to consider, or key budget holders seem unable to take into account the cost of keeping these patients alive with supportive care – or palliative care.
The patient who died ended up costing the NHS closer to £250k – just to keep him alive for 5-6 months before his death – between frequent hospital stays, tons of antibiotics, expensive new medication, frequent complex blood and platelet transfusions.

A saving of £100k = an NHS bill of £250k + a death
This is not tax payer’s money well spent

Furthermore – we have uncovered that despite NHS England’s explanations, IFR cases are not assessed by transplant specialists, but by a mix of “trained” IFR staff, pharmacists and public health consultants or another random types of physicians.
There is no process forcing IFR staff to submit highly complex transplant IFR’s to relevant experts in that field.
There is an ongoing NHS England consultation on this very topic closing on 15/01/17.

Anthony Nolan, together with the Blood Cancer Alliance community and leading experts, published an open letter to the Secretary of State for Health (Times, July 2016) and led a significant campaign – but to no avail:

www.anthonynolan.org/news/2016/07/14/our-letter-following-nhs-england-announcement-funding-second-transplants

“We believe this is simply wrong. If a stem cell transplant is the best option for a patient, and a donor can be found, we believe the treatment should be available. We know that there are many people alive today, leading fulfilling and active lives with their families, because they had a second transplant.”
(Anthony Nolan campaign extract).

¹ Figures obtained through Freedom of Information Act enquiries – and from medical notes shared by the family

Below are the full stories of both families. 

This makes for very difficult reading.

We urge the government to review this nonsensical and inhumane situation.

There are cases where patients do stand a good chance to have a successful  2nd transplant – but these decisions must be made by expert haematologists – not public health physicians, let alone non-clinical staff – however well trained.

The savings are a false economy, as evidenced in this case.
Supportive care ends up costing twice as much, patients occupy badly needed hospital beds, families lose a bread-winner and government a tax-payer.

This makes no sense.

Sasha Jones – who urgently needs a transplant – but NHS England says NO

Dec 2016

I am a fun loving 34 year old nail artist from Greenwich, London. I am the wife of my childhood sweetheart Lloyd Williams and
Mother to our 13 year old daughter Katia and 8 year old Son Lj Williams. I am fighting for a second bone marrow transplant. I am
Sasha Jones (Williams) and I deserve to be alive just like you.

After a routine blood test on the morning of March 11 th 2015 due to me feeling unwell, I was sadly given the devastating news that
the tests suggested I was suffering from Acute Myeloid Leukaemia and was admitted within hours.

On Sunday 15 th March I started my chemotherapy treatment and a bone marrow aspirate revealed that the only chance I had of keeping the disease at bay was to have a bone marrow transplant. So the search begun to find a donor and my treatment commenced.

After my first round of chemo it was revealed the amazing news that I was in complete remission and had 3 donor matches!
3 rounds of chemo over a 5 month period later and I was admitted to Kings College Hospital for my graft. On 26th August 2016 and after 1 week of high intensity chemotherapy treatment I was given the bone marrow transplant I so desperately needed in the hope my leukaemia would stay in remission.

After 18 days in hospital, lots of blood treatment, pain management and rest I was relieved to seem well enough to go home to my husband and children. However, this was short lived when I was re-admitted 3 days later after Kings discovering the activation of a virus passed on through my new donor. I then spent another grueling 14 days in hospital trying to get rid of the reactivated virus only to be released home again to start my recovery.

But, yet again after another 2 days at home I was crucifying readmitted once more for yet another 14 days due to another virus called BK 2000 causing haemorrhagic cystitis. This left me with months and months of grumbling bladder pain (which I still have too this very day every time I urinate) and incontinence which made the recovery process a very uncomfortable, embarrassing and painful process.

By the beginning of October I returned home and managed to then stay home with medication and 2 visits a week to Kings College Hospital to monitor my progress. On top of all this my donor and I did not have the same blood type which also caused problems up until as recent as August 2016 when my blood changed to a type A+ from my original O+.

During 2016 I visited the hospital on a weekly basis and it started to look like everything was going right.
My recovery was long and hard but I never let it get me down, I had to do it for the children!
I could see the light at the end of the tunnel with my 1 year bone marrow milestone approaching on 26th August 2016!
Sadly my happiness was short lived...

On Tuesday 9th August 2016 after a routine blood test again I got the devastating news that my new bone marrow was now producing leukaemia cells and that the transplant had failed.
This was confirmed by a bone marrow aspirate result on August 23rd 2016, I had relapsed, the dreaded cancer had returned and I needed to start my battle all over again beginning with chemotherapy followed by an infusion of donor cells once in remission.
I was to be put forward for new clinical trials using donor cells and a vaccine to give me any hope of surviving without a second transplant as this option had been stripped from patients due to NHS cut backs. NHS England had announced that it would not routinely fund second stem cell transplants for patients with blood cancer or blood disorders who have relapsed.

I was then hit by the news that not only was NHS England denying patients these life-saving 2nd transplants, but that also my donor was no longer available to offer an infusion of cells or to assist with the completion of the trial.

I have therefore been left with no alternative than to have a 2nd bone marrow transplant and I’m currently waiting on a decision from NHS England as to whether they are going to provide me with the funding I so desperately need to save my life.
Given that they cannot offer me an alternative end to my treatment as my donor has been removed from the register due to circumstances unbeknownst to me, it is believed that under these exceptional circumstances (seeing as my life itself isn’t important enough) that I SHOULD be entitled to another bone marrow transplant to give me a chance of fighting the disease and beating it with a better matched donor that I have waiting for me right now.

I am young, in the prime of my life, have everything going for me and everything to live for, not to mention my 2 children who deserve the right to grow up with their mother. They have also the right to the love, support, care and stability that only a mother’s love can give.
We as a society and nation try only too hard every day to promote and push - only to take that chance away from 2 children for a mere £120k by not handing their mum a life line that they have such easy access to......

Another 2 children’s lives do not need to be destroyed, cancer already takes so many of us.
Why are we now giving up on us....
When did we stop trying to save lives over money but at the same time we put money into research to save lives that you then later let die...

#fingercrossedforsasha  #rideforsasha
https://www.gofundme.com/rvg4m54m

MDS UK update: Sasha has been refused the 2nd transplant by NHS England.

Thanks to your help her private fundraising has reached about £110k and the funding of stem-cell transplants was discussed in Parliament! This is a huge step in the right direction. Please keep sharing her story and sign the petitions to make Sacha the last patient that needs to pay for a 2nd transplant.

Family of Gavin – RIP

This is a summary of events – from diagnosis in 2012 – through to Gavin’s passing on the 6th May 2016.
Written by Lisa, his wife.

Nov 2012: Gavin gets his MDS diagnosis. Devastated and confused we are told he will need a bone marrow transplant in the new year.

June 2013: Gavin receives his first transplant and is home in little over 2 weeks. We are all elated and pray this is the new beginning for us all.

Oct 2013: Gavin is taken back into Kings for an infection that is destroying his red blood cells. Extremely ill his life is quite literally in the balance. But he fights it and is home and well within 3 weeks.
In between the above and September 2014 Gavin has top up transfusions of red blood cells and platelets (but rarely at this point).
The doctors are pleased and allow us all to travel to the USA for a month’s holiday.
Gavin was the healthiest he had been in a long time and we had a wonderful time.

Sept 2014: Gavin becomes unwell. A Bone Marrow Biopsy suggests that he may have relapsed.
A course of Chemotherapy is advised. We are all devastated but remain positive.
Gavin's condition is very up and down between September and December and he is taken into Kings before Christmas with another infection.
The Rollercoaster that is MDS is truly devastating to us all.

2015: Not great - highs and lows, lots of infections and stays at Kings and more Chemo, that had to be stopped.

June 2015: Gavin is needing regular red blood cell and platelets transfusions. A planned holiday to Menorca is cancelled due to Gavin's condition. We head to Devon for 3 weeks, but the holiday is full of interruptions as Gavin needs regular transfusions at Plymouth Hospital. He remains positive though, but we are dreading the thought that another transplant would be needed.

November 2015: We receive the devastating news that Gavin will require another transplant. His condition at this point is very up and down with infections putting him back into Kings at regular intervals, again, in the run up to Christmas. At this point he is also living his life going backwards and forwards for transfusions at our local hospital twice a week. This is becoming very draining on him and us as a family. But we remain positive.

Feb 2016: We receive the devastating news that Gavin's funding for transplant has been refused.
How? Why?
We arrange a meeting with our MP Nicholas Soames. He is very sympathetic and agrees to bring up Gavin's case with parliament.
Ironically that evening an ambulance is called as Gavin is taken ill with another infection.
We vow to raise the money, but are advised that another application for transplant will be put forward.
We feel like we are not doing anything to get this ball rolling - this is his life and we are desperate.Gavin's condition at this point is up and down, and he is struggling to remain positive.

April 2016:  After a wonderful day at the Isle of Wight, Gavin gets rushed back into hospital, East Surrey, our local hospital. It's the start of the 3 day doctor’s strike. We are all scared / devastated that this is happening again. On arrival there, we are told he will get the best care . How wrong were we. Gavin waits 8 hours for a simple bag of blood, he is climbing the walls in pain.
The doctors diagnose Pleurisy. He is put onto morphine for the pain. Gavin stays there for 3 days, and is not put onto the Kings Care plan until that 3rd day (when the doctors return back to work). At our total insistence as a family we get him transferred to Kings.
Dr Raj advises he needs this transplant but he needs to get well first. But he won't be leaving without it (hope again).
Gavin's condition deteriorates. He has a Lung Wash to clear the infection, the worst thing I've had to sit and listen too, I just wanted to run in and make them stop.
He improves a little and seems brighter. The morphine though has made him confused about things (very upsetting for myself and the children). It has also made him very constipated and blocked.
He can barely eat or drink.
It just feels like we are going 1 step forward 10 steps back.
The children just want their fun loving Daddy home and I my husband.

1st May 2016: Gavin gets told that there is nothing more they can do... we both can't believe it and won't believe it.
We put ourselves in a bubble and choose to ignore. Go to Costa and talk about anything but THAT.

2nd May 2016: Take the children to see him, very upsetting. He could barely be around them for no more than 15 mins.
Not like Gavin at all. He begs me not to leave that night.

Tuesday 3rd May 2016: I'm met by the palliative team at Kings. There is nothing more that can be done but to make him comfortable. I feel like my whole world has been blown up in front of me. My children, how do I tell them? We call all our family and friends. There is a constant flow of people for days.

Wednesday 4th May 2016: The children arrive and I tell them the news. They all react differently. Lots of tears, screaming the disbelief. I can safely say it was the hardest thing ever, but actually worst was to come.
We spend days and nights sitting and talking to him. The girls are amazing with him. Nursing him, holding his hand, cuddling him. Quite amazing for a 11 and 9 year old.

Friday 6th May 2016: My world is changed forever, our world. Gavin passes at 6.09am the exact time he was born on 17th Sept 1976. My mum brings the children up, I tell them there's another star in the sky.
They are destroyed - I am destroyed.

This should NEVER have happened. My gorgeous loving husband who had a zest for life and wanted to live was gone.
Myself and the children, 8 months on, are still devastated.
We receive regular counselling to get us through our grief, the pain and trying to understand WHY ?
The NHS failed Gavin when he needed it most...

Give Sasha a Chance!

Add your signature to Sacha's page on Change.org

A publicly funded NHS

The NHS must remain free & never be privatised

MDS UK Note:

We are regularly in touch with the family – but Lisa and the children are still understandably struggling heavily with the loss of Gavin – and therefore all enquiries should be directed to MDS UK. Thank you for your understanding.
We also sincerely thank the whole extended family, their friends, colleagues, employer for their ongoing support, participation, fundraising and awareness raising of MDS.
We have the deepest of admiration for Gavin’s two daughters especially, who have displayed an incredible courage, maturity and strength over the last 3 years.
They have spoken up about MDS, in school assembly, with friends, their athletics club, written to the press, participated in MDS UK activities, swam and baked for fundraisers, filmed an amazing awareness clip with their little brother – and even cut their hair off to make wigs for children with cancer.

There is hardly anyone they have not engaged around them- and still do so.

Please look up all of the above on our website www.mdspatientsupport.org.uk
We are immensely proud of them-and will continue to fight this issue in memory of Gavin – and for his family.
Their wish now is simply that no family should ever need to go through what they are experiencing – this is why they agreed to share these details now.

Gavin's Family Video to Raise Awareness on MDS


Patients condemned to die: NHS denies funding for 2nd stem cell transplant

Anthony Nolan's Trust urges the Government to ensure every patient can access the treatment they need

Update 24 February 2017: NHS England reinstates funding to 2nd stem cell transplants thanks to your support! Read More Here

  • Stem cell transplants help cancer patients replace damaged blood cells
  • Procedure costs the National Health Service between £50,000 and £120,000 
  • But NHS decides to ban second transplant if disease comes back after first
  • Anthony Nolan Trust charity says 22 transplant patients relapse each year

In a joint letter to the Department of Health, Anthony Nolan Trust and some of leading names in British medicine have rallied against the new guidance, issued this month.

‘Without a second transplant, the small percentage of patients considered suitable for one will die of their underlying disease,’ said Professor David Marks, former president of the British Society of Bone Marrow Transplantation and one of 18,000 signatories, including dozens of specialists in blood disease, to a letter handed last week to Health Secretary Jeremy Hunt.

The treatment, which offers the best chance of survival to these patients, is given routinely in the US and Europe, and Prof Marks, director of the Bristol Bone Marrow Transplant Unit, says: ‘I know of no other first-world country where people with a 30 per cent chance of a cure are denied a transplant.’

Before 2013, patients in the UK eligible for a second transplant received one, but in that year NHS England (NHSE) began evaluating whether repeat transplants should continue to be funded.

For the past three years, doctors have had to submit individual funding requests. Some have been turned down, and NHSE has since declared second transplants ‘not currently affordable’.

Henny Braund, chief executive officer of British transplant charity the Anthony Nolan Trust, which co-ordinated the petition and is asking the public to write to their MPs, says: ‘This is a step backwards for patients.

A transplant costs between £50,000 and £120,000, but the cost of caring for one patient refused a transplant in the past few years was £130,000 for the year they survived, and for another patient who survived three years it was £160,000.

‘Of those who do get a second transplant, one in three survive at least five years, and many are young people leading fulfilling lives and making a contribution to society. Denying those patients a chance of life amounts to a death sentence.’

One of those presenting the protest petition last week was acute myeloid leukaemia sufferer Emily Wellfare, who was told in December she would die if she did not get a second transplant. 

She said: ‘My consultant at the Royal Marsden Hospital told me it would be the only thing that could save my life.  'He mentioned he would have to apply for funding, and it never occurred to me it could be refused.’

In February the 25-year-old from Eastbourne was given the shocking news that the application had been refused. 

‘My doctors said the hospital was going to give me the transplant anyway. I am so grateful they fought so hard for me, but I want to know why the NHS thought my life wasn’t worth fighting for,’ added Emily.

She was in the second year of a law degree course when she started suffering from incessant coughs and colds in early 2012. In April that year she was diagnosed with acute myeloid leukaemia. 

After chemotherapy, Emily spent a year in remission before discovering at her routine one-year check-up that her leukaemia had returned. 

She was told she would need a transplant of stem cells – a procedure once called a bone-marrow transplant.

Cells, taken from a donor, grow in the bloodstream and make healthy blood cells to replace a patients’ own damaged ones.

Emily had her first transplant in February 2014, following three more rounds of chemotherapy.

After nearly two further years in remission, it was discovered at the end of last year that Emily’s cancer had returned again.

Since having her second transplant on March 14, Emily has been well but has to take steroids, antibacterial and anti-fungal drugs and immuno-suppressants.

Emily was luckier than another patient, a 21-year-old from Nottingham, who was rejected for a second transplant. 

Dr Jenny Byrne, honorary consultant haematologist at the city’s university hospital trust, said: ‘It was extremely disappointing and frustrating, given that we have plenty of patients in Nottingham who have had second transplants and are long-term survivors, fit and well and cured.’ 

A spokesman for NHS England said: ‘The procedure isn’t being funded this year because its low clinical benefit and high cost meant that it compared poorly with other new treatments which have been considered for funding this year.’

He added that individual funding requests would be considered where exceptional need and benefit could be provided, and the policy would be reconsidered in 2017.

However, Dr Byrne said: ‘It is not true to say that individual funding requests for transplants are getting consideration because they are routinely screened out by administrators who claim the cases are not sufficiently unique, and it is impossible to demonstrate the level of exceptionality that is called for.’

A Department of Health spokesperson said: ‘Funding decisions around treatments such as these are rightly for NHS England. We have referred the decision to them.’


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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Russell’s stem cell transplant experience – new video

New video clip – Russell Cook’s stem cell transplant experience
05/03/15

We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook.

He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells from his 15 year old son Luke – which fortunately did work.

Russell has since gone on to run several marathons – and is doing extremely well.

Russell’s Stem Cell transplant from mds patient support on Vimeo.

 

A stem cell transplant is not an easy treatment option – nor is the decision to opt for a transplant.
If you are considering a stem cell transplant, please do have numerous conversations with your transplant team – until you have all the information you feel you need to make the decision.

Check the Anthony Nolan website, read the booklet “The 7 steps”.
All to be found on our Information Material webpage.

You may also talk to other patients – but do remember that every patient experience is fairly unique.
We have several other pages on our website that may help you as well.

Check our Useful links page – listing several stem cell transplant blogs – including practical tips on what to bring to hospital – how to cope for those 2-4 weeks in isolation, whilst the stem cells engraft.

If you are a healthy individual – aged 16 to 55 – please do consider registering to become a stem cell donor.
Your contribution and potential donation will save lives.
Contact Anthony Nolan or Delete Blood Cancer – visit our bone marrow donation page to learn more: Stem Cell Marrow Donation

You may also want to watch this great clip from our colleagues at the ACLT:

 


5 Bone Marrow Transplant Blogs

What happens before, during and after a bone marrow transplant?

Updated on 8/08/2016

If you are interested in learning more about what happens before, during and after a bone marrow transplant - we have 5 different MDS transplant blogs to share with you:

Emma Payne: https://emmafightsmds.wordpress.com/

Jayne Snell: http://www.caringbridge.org/visit/jaynesnell

Chris Spencer: http://chrisspencer416.blogspot.co.uk

Brenda Goodland: https://brendagoodland57.wordpress.com/

Evie McClean: Evie McClean YouTube Channel

All 5 are quite different in style - but all helpful and well written. Thanks to all 5 for maintaining the sites and for carrying on writing.

Emma Paine:

Emma had a first stem cell transplant in 2011 and recovered well. But her MDS came back in 2015 and she needed a second transplant.
Funding for second transplants has been revised in the UK due to “cost-effectiveness” issues and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)

Emma battled to be granted a further chance to live and she managed to have a second transplant in January 2016. You can read all about her and her campaign to get the second transplant funded in her blog Emma’s Fight against MDS

Jayne Snell:

Jayne was diagnosed with MDS in early 2011 and had her transplant in 2012, when it was determined that her condition was at high risk of progressing to AML - Acute Myeloid Leukaemia.

She introduces her blog like this: "I originally started this blog for my family and friends, so that I could stay in touch with them throughout my periods of isolation.  However, it turned into something huge!  It was my support system, the love and the care that I received through this blog was like a blanket of protection and I really cant thank you all enough for that.

This is NOT a sad story.  I hope this blog helps others who are about to start treatment.  Just stay focussed on getting the cure, do not lose sight of that, and remember that everything that happens to you through your journey is one step closer to wellness."
http://www.caringbridge.org/visit/jaynesnell

Chris Spencer:

We stumbled across Chris's blog via the Anthony Nolan Facebook page.
We don't know him personally - but thought his blog may also be helpful to any other MDS patient out there.
http://chrisspencer416.blogspot.co.uk

Brenda Goodland:

After many years living with a very stable form of MDS, the condition has progressed and Brenda is now undergoing a stem-cell transplant procedure to cure her.
The donor is her sister Heather (left in the picture  below), who is also contributing to the blog. https://brendagoodland57.wordpress.com/

Evie McClean

Evie McClean is a member of MDS UK Patients Support. In July 2014, when she was 8 years old, Evie was diagnosed with leukemia. After 4 months of chemo she had 6 month of remission, but then she became ill again. In July 2015 she was diagnosed with MDS and bravely endured more bouts of chemo. In November Evie received a bone marrow transplant.
You can watch here some of Evie’s amazing video clips, where she tells all about her favourite things and the ways she and her family have learned to live with her illness.

The following long-standing blogs were written by patients who sadly passed away due to severe infections some time after their transplant.
We still encourage you to read these excellent blogs, which are full really useful information on how to prepare yourself – and what the day to day will be like in hospital.
And please please please – do remember that EVERY transplant experience is unique.
This is also why we decided to keep these blogs for people to read. Similar people to Glyn and Richard have gone on to have very successful transplants.
We also want to pay tribute to these patients who were amazing members and supporters of MDS UK – and their families, friends and colleagues, who are staying in touch with us. Thank you to all.

Richard Barker

This is the “MDS in the Family” blog, which was kept by father and daughter team Roz and Richard Barker.
http://mds-in-the-family.blogspot.co.uk/
Roz and Richard started this blog when Roz (daughter) was diagnosed with MDS.  She then proceeded to have a bone marrow transplant – and is now doing very well.
Richard (father) was diagnosed shortly after Roz’s transplant,  and saddly passed away in 2015,  five years after his diagnosis. Richard was able to see one son married, celebrated his grandson passing his first GCSE and his granddaughter passing many ballet exams.

Glyn Jones

Glyn was diagnosed with MDS on 8th August 2014 and sadly passed away in 2016.
He wrote a very comprehensive blog about his experience as an MDS patient and campaigner.
Read more: http://glyn.webnode.com/

Please remember that MDS patient's treatments and experiences will vary from person to person and that response to a bone marrow transplant relies on many different parameters and variables.
ALWAYS talk to your haematologist or nurse specialist if you have ANY clinical questions or issues.

Please be aware that MDS is NOT considered to be a genetic condition that runs in families. However - there are some very rare occurrences, where more than 1 family member will develop MDS.  In those situations please make particularly sure you are treated in a MDS Centre of Excellence.  This will not only benefit you, as the monitoring will be very thorough, but you will also assist researchers to better understand the nature and perhaps causes of this disease.


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