“One of the biggest challenges for a patient is they’ve never heard of MDS” says Prof David Bowen

Why is it important to have an informed MDS patient?

Sophie Wintrich, Chief Executive of MDS Patients Support Group interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital – Leeds. Watch the video and read the excerpts below.

"If the patient has some idea about what MDS is and they come with a set of questions from their own readings, that is a useful framework to find the details that are specific to them.
I usually use the MDS Patients Support Booklet... I mark the booklet and the sections that are relevant to them..." Prof. David Bowen

Clinical trials and the European MDS Registry Trial

Question: How frequently you discuss clinical trials with your MDS patients? Are there any current trials that you are discussing at the moment?

Prof. Bowen: We are a major centre for MDS research, so we are very focused on clinical trials here in Leeds. Most of our patients are suitable for at least the Registry Trial. The Registry is essentially an opportunity to collect information about every patient's type of MDS and to use that information going forward, document that information about how that patient's MDS develops and what sort of treatment they have and what is their response to treatment.
That is a trial, a Registry Trial, very important to generate data that we call "real world data" or "community data" to record information about patients that are not in clinical trials for new drugs, but are nevertheless managed using conventional treatments.


A New European Network, EuroBloodNet, will ensure better care for MDS patients

Patients with rare blood disorders will benefit from networks of excellence across Europe

EuroBloodNet was launched at the third conference on European Reference Networks (ERNs) yesterday in Vilnius, Lithuania

Euroblood Net

European Reference Networks (ERN) is an initiative of the European Commission and consists of networks of healthcare providers and centres of excellence across Europe aimed at improving quality, safety, and access to highly specialised healthcare.

Through these networks, healthcare providers have access to a much larger knowledge pool and patients have better chances of receiving the best treatment.

EuroBloodNet, the European Reference Network for rare hematological diseases, brings together 66 highly specialized hospital centres with expertise on malignant and non-malignant rare blood diseases.

MDS Patients are represented

Patient involvement is key, so the haematology patient community elected five representatives for EuroBloodNet. Sophie Wintrich, from the MDS UK Patient Support Group, is among them, to ensure that the patient voice is fully represented.

This is a great achievement and a proof that the role of patients is increasingly recognised in clinical care.

After their first meeting in January 2017 in Paris, EuroBloodNet will gather again at the Congress of the European Hematology Association, between 22-25 June, in Madrid, Spain.


Personalised Treatment for MDS Patients: Not Far-Off says Dr Catherine Cargo

Where are we exactly with respect to personalised treatment for MDS patients?

Sophie Wintrich, Chief Executive of MDS Patients Support Group interviewed Dr Catherine Cargo – Consultant Haematologist at St James University Hospital – Leeds. Watch the video and read the transcript below.

MDS: A disease where everybody is different

When we think about personalised treatment we think about a disease where everybody is different. We group all these patients together, but everybody’s disease has slightly different changes in the genetic make-up of the disease and also how they progress or how they do in the duration of their disease.

The really interesting thing about where we are with MDS now is that we will hopefully be able to personalise treatment for the patient so we can look at the patient - look at their individual disease and what abnormalities they have - and then potentially target those abnormalities with specific drugs.

"We are starting to see particular drugs which target specific abnormalities"

I think that it is an exciting time, because we are now starting to see particular drugs which target abnormalities or genetic mutations which are found in MDS and certain patients will respond very well to those.

Another interesting thing is that we can use technologies to identify patients who will respond to more generic drugs - drugs that we at the minute give to everybody. There will be certain patients who will respond very well to those and we should be able to use a lot of these new technologies to identify patients who will respond better, and give patients an idea of how they are going to do on treatment and what their future holds.

Does it mean that all patients must have genetic mutation test?

Q: Does that mean we should start to insist that all patients must have genetic mutation tests to establish which treatments may work out best for them?

I think we are getting to the point where this information is going to be useful in the clinic. We are still gathering information and the tests that we use are still quite difficult and quite complicated for a lot of different labs. And at the minute we don’t have a very standardized way of doing this, so there is quite a lot of work that needs to be done before we get to the point where we can offer this as a blanket test for everybody. I think we will get there and it is something that we will do in the future. It is an option, we can do it in the UK. It’s exciting and I think it will be offered in future, but we shouldn't necessarily be insisting on it now. There are certain cases where it will be particularly helpful and it’s definitely being applied in the clinical trial setting. It will be very interesting gathering that information. At some point in the future we will be able to insist that patients do get this testing done.

Q: How far off is this future?
I don’t think that it is that far off. This is something that we are going to be doing quite soon. The technology is there. It’s becoming cheaper and cheaper to do, and it’s becoming easier to do, even within the NHS. So I think within the next couple of years we will be seeing this as a routine test for MDS patients.


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!


Missed the Birmingham MDS Patients & Family Forum? Catch Up Online

The latest MDS UK Patient and Family Forum took place in Birmingham on the 4th of February.

It was an invaluable opportunity for those affected by MDS to hear about the latest developments in MDS research and treatment.

MDS Families and Patients Forum 4th February

Those attending the forum took part in a variety of workshops and sessions delivered by experts and were invited to ask questions on the most pressing issues, from how to manage fatigue to newly available treatments.

The list of speakers included Peter James, Clinical Nurse Specialist at Worcestershire Acute Hospitals NHS Trust, Susan Smith, Research Nurse at the Kings Mill Hospital, Sutton in Ashfield and Dr Justin Loke, Haematologist, QE at Birmingham, among others.

Take a look at the full agenda and the photos of the event here

Read The Forum Presentations

MDS Patients Forum: A Run-through

What happened in Birmingham? Everything you need to know, from the welcome notes to the credits.

Download PDF

Clinical Trials: Potential Benefits and More

Why entering a Clinical Trial? Get to know more about the process and potential outcomes

Download PDF

Myelodysplastic Syndromes and their Treatment: an Update

Refresh your knowledge on MDS and get the latest on treatment options

Download PDF

Don't miss our next forum: contact us to get invited. Telephone: 020 7733 7558 Email: mds-uk@mds-foundation.org


Quality of Life is an Important Treatment Goal in Patients with MDS

In this presentation from the 2016 "European Focus on Myeloproliferative Neoplasms and Myelodysplastic Syndromes", Dr. Fabio Efficace discusses the importance of quality of life as a treatment goal in myelodysplastic syndromes (MDS)

Dr. F. Efficace discusses importance of Quality of Life as Treatment Goal in MDS

When latest genetic analysis and therapeutic strategies are incorporated into MDS treatment the outcomes and quality of life in patients with MDS improves.

Recent research trials have incorporated the opinion coming from MDS patients themselves about their own quality of life to improve the assessment of several treatment options.

These changes to refine and strengthen diagnostic and risk-assessment models, along with the rapid evolution of disease management strategies that use standard of care and novel therapeutic agents, will likely further enhance clinical outcomes in patients with MDS and improve their quality of life.

Read Latest Research


Researchers find new way to target blood stem cell cancers

Researchers designed an antibody that recognises and destroys CD99-covered leukemia cells while sparing normal blood stem cells

Leukaemia Cell

This is a microscopic image of a leukemia cancer stem cell (Credit: Montreh Tavakkoli) with normal DNA coloured in blue. CD99, those green-coloured spots, is a protein-sugar molecule, which occurs more frequently than normal on stem cells responsible for blood cancers, including acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS).

Building on this discovery, researchers from NYU Langone Medical Center and Memorial Sloan Kettering Cancer Center designed an antibody that recognises and destroys CD99-covered leukemia cells while sparing normal blood stem cells, a finding confirmed by experiments in human cells and in mice with AML cells.

Antibodies are immune system proteins that stick to a specific target. In recent years, researchers have become capable of engineering antibodies so that they target disease-related molecules.

"Our findings not only identify a new molecule expressed on stem cells that drive these human malignancies, but we show that antibodies against this target can directly kill human AML stem cells," says corresponding study author, Christopher Y. Park, MD, PhD, associate professor in the Department of Pathology at NYU Langone and its Perlmutter Cancer Center.

"While we still have important details to work out, CD99 is likely to be an exploitable therapeutic target for most AML and MDS patients, and we are working urgently to finalize a therapy for human testing," says Park.

Direct Cell Killing

Acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) arise from abnormal stem cells that build up in bone marrow until they interfere with normal blood cell production. Patients struggle with anemia, increased risk for infection, and bleeding.

In AML, a small group of leukemic stem cells become incapable of maturing into red or white blood cells as intended. Most leukemias respond initially to standard treatment, but relapse is common as standard treatments fail to kill leukemia stem cells, which continue to multiply.

The researchers examined stem cells from 79 AML and 24 MDS patients and they found that approximately 85% of stem cells in both groups had high levels of CD99. The levels were so high that diseased stem cells could be cleanly separated from related, normal stem cells in AML patients.

The research team then made several CD99 antibodies, and chose to focus on the one that most effectively killed those cells. Researchers found that when the study antibody attaches itself to CD99 on the surface of a cancer stem cell, it causes leukemia stem cells to die.

"With the appropriate support, we believe we can rapidly determine the best antibodies for use in patients, produce them at the quality needed to verify our results, and apply for permission to begin clinical trials," says Park.

Read More

More information: "CD99 is a therapeutic target on disease stem cells in myeloid malignancies," Science Translational Medicine stm.sciencemag.org/lookup/doi/10.1126/scitranslmed.aaj2025

Provided by: New York University School of Medicine

Read Latest Research


How successfull can a clinical trial be? By Shirley O’Brien

How a clinical trial gave me my life back after MDS and AML

Five years ago, my spouse and I had settled into our dreamed-of retirement. But on Feb. 6, 2012, I was diagnosed with myelodysplastic syndrome (MDS). Because I was in my early 70s, a bone marrow transplant wasn’t my best option.

Shirley O’Brien

What happened when the chemo stopped working

I received chemo infusions for seven days every 28 days to improve my bone marrow and blood cell function. But after nearly 3 1/2 years of this, I learned the chemo was no longer working.

A subsequent bone marrow biopsy demonstrated progression of my MDS, with the identification of an IDH1 mutation.

I sought a second opinion and got a grim prognosis. The oncologist gave me only five to seven months to live. He said I needed to find a clinical trial soon.

CAR T cell therapy is currently being evaluated in the clinic at MSK for certain types of leukemia and lymphoma. In this approach, T cells are genetically engineered to recognize a protein called CD19, which is found on the surface of blood cells called B cells. In the largest study reported so far, for adult patients with B cell acute lymphoblastic leukemia — a rapidly progressing form of blood cancer — a report published by MSK researchers last year found that 88 percent of patients responded to the therapy. In late 2014, the US Food and Drug Administration granted MSK Breakthrough Therapy Designation for its CD19 CAR therapy.

Choosing a clinical trial at MD Anderson

During my search, I learned about a Phase II clinical trial at MD Anderson using an experimental drug called AG120. About a week after I applied, Courtney DiNardo, M.D., asked me to travel from my home in Tucson for testing.

Between MD Anderson’s huge campus and the battery of medical tests, our first visit was overwhelming. Yet, when Dr. DiNardo entered the room, she immediately made us feel like we were long-time patients or even friends. She was so cool, young and confident.

Only 24 hours after my spouse and I returned home, Dr. DiNardo called and asked us to return right away. We canceled our holiday plans, packed our motorcoach and arrived in Houston on Dec. 12, 2015.

At MD Anderson, we learned that my MDS had progressed to acute myeloid leukemia (AML). This was shocking, but I felt a strong sense of hope. We were right where we needed to be. People come to MD Anderson from all over the world, and I was grateful to be there with so many other AML patients.

On December 23, I took my first pills for the clinical trial. Then came endless EKGs and every-other-day blood tests to check my blood cell counts.

My amazing AG120 results

Two weeks into the clinical trial, my white cell count was higher than it had been in two years. My spouse and I were amazed.

But the biggest surprise was my blast count. When I’d arrived at MD Anderson, it was at 30% — extremely high. At the end of the first 28-day cycle, it was just 2%, which is normal.

Unlike chemo, which tries to kill the blasts and everything else in the bone marrow, AG120 blocks the mutant IDH1 protein that caused my AML. It allows the blasts to mature properly into normal white cells of the immune system. The bone marrow is no longer crowded out by AML, and the normal red cells and platelets return, too.

I’m now beginning my 12th cycle of AG120, and my blood values, red blood cells, white blood cells and platelets have all reached normal range. I’m in complete remission, but I will continue to take AG120 indefinitely. Whenever Dr. DiNardo’s team asks about side effects, I can’t come up with anything.

I am so grateful and praise God every day for giving me my life back through the AG120 clinical trial.

I used to always say you have to be your own advocate because no one else will. But I was unable to take charge of my cancer until I met Dr. DiNardo. I’ll always remember what she said the day before I enrolled in the clinical trial: “You are in the right place at the right time with the right mutation.”

Take a look at current MDS clinical trials


ASH 2016: Promising developments for MDS patients

Dr. Garcia Manero, from The University of Texas MD Anderson Cancer Center, highlights some promising clinical data presented at the 58th Annual Meeting of the American Society of Haematology (ASH)


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


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