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.
“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.
“The Make Blood Cancer Visible campaign was set up in Cardiff during the week of 10 – 15 Sept, in Working Street.
Take a look at the many photos and reactions of the public to this exhibit – and read all about the campaign on the London launch page
Interview with Donna and Dr Ceri Bygrave, including footage of the installation and the campaign film
Emily Clark was determined to help other cancer patients before her death. Read the full article on Wales Online.
The legacy of cancer blogger Emily Clark continues to inspire others more than two and a half years after her death. Mark Smith caught up with her mother and sister.
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!)
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!
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!!
Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes
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.
Andy Scott, coordinator (and carer)
Philip Dinn, coordinator (and patient)
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.
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.
Patients in the Wessex region can also benefit from additional complementary treatments and services, provided free of charge by the Wessex Cancer Trust.
We encourage you to check their website:
www.wessexcancer.org.uk/Pages/Category/centres 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.
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.
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.
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.
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:
“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
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.
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...
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.
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...
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.
We received a very kind donation of £306.50 from the company Etihad Airways, who raised these funds after one of their employees, Gavin Hepburn was diagnosed with MDS.
Gavin has been employed at Etihad Airways since 2004.