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Be our hero! Join our 20:20 campaign and fundraise for MDS UK

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MDS Patient Support

The 20for20 Challenge is back!

2020 was a difficult time for everyone especially small charities. So 20 small charities came together to brainstorm and the result was to do 20 challenges over 20 days.

For MDS UK the campaign proved immensely successful. 943 supporters and MDS patients raised £37,461 which allowed us to keep supporting MDS patients during the pandemics.

We are pleased to announce that 20for20 challenge will begin again on the 20th September 2021 and run until just before Christmas 2021!

Read the stories of our 20for20 amazing fundraisers

20for20 Challenge: Steve is messing about in the garage!

Adam’s 20 for 20 Challenge for MDS UK

Suzanne McWilliams 20for20 Challenge for MDS UK

The Mason Family 20for20 Challenge for 2021

Christine Peel’s MDS UK Christmas Cards 2021

Claudia’s 20for20 Challenge: Genealogy research in return for a donation for MDS UK

You can start and finish anytime within this time frame, doing 20 of the same challenges or 20 different challenges. Some examples of the inventive fundraising challenges last year were riding a bike, walking, painting, writing poems, eating 20 pancakes, face painting, car washing, assault course, lego making, disco dancing and dressing up.

Donna, one of our superstars fundraisers told us:

I did my challenges with my husband and then 12 year old twin boys. It gave us a purpose for 20 days to come together as a family and we had so much fun and laughter and it brought us closer together as a family.

If you don’t fancy doing 20 challenges, following on from the Olympics this year, supporters can do one challenge and then ‘Pass the Baton on’ for the next person to do their challenge!

Please email us fundraising@mdspatientsupport.org.uk and take part in 1 or 20 challenges

20for20 Covid Friendly Fundraising Ideas

  • 20 minutes of knitting per day for 20 days
  • Walking 20 minutes a day for 20 days
  • Selling 20 2nd hand books
  • Invite 20 friends to a Fundraising Quiz Night on Zoom
  • Selling 20 random items
  • Surviving 20 days without chocolate challenge
  • Taking 20 pictures of my dog in 20 days
  • Running 20 miles
  • Learn to crochet in 20 days challenge
  • Invite 20 friends to a Fundraising Dance Lesson on Zoom
  • Baking 20 cakes for sale in 20 days
  • Posting 20 facts about MDS on Facebook challenge
  • Invite 20 friends to a Fundraising Book Club Evening on Zoom
  • Making 20 cards for sale in 20 days
  • 20 minutes a day of colouring mandalas for 20 days
  • Invite 20 friends to a Fundraising Auction on Zoom
  • Surviving 20 days without beer challenge
  • Cycling 20 miles 20 times
  • Reading 20 books in two months
  • Invite 20 friends to a Fundraising Singing Lesson on Zoom

To fundraise for us:

  • Let us know you’d like to fundraise for MDS UK by emailing fundraising@mdspatientsupport.org.uk
  • Visit our MDS JustGiving page. Then click on the orange “Start fundraising” button.
  • Create your JustGiving page and share it with friends and family so they can donate to your event!

To donate:

  • If you’d prefer to simply donate, you can do so by clicking here:

Take inspiration from our 20for20 event last year! What did our fundraisers do?

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Let’s Talk About Blood Cancer

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MDS Patient Support
MDS Patient Support

September is Blood Cancer Awareness Month: Get involved!

More than a million people are diagnosed with blood cancer around the world every year – yet there is still relatively low awareness of it.

Get involved in the MDS Alliance’s #LetsTalkAboutBloodCancer campaign, and help support the fight against blood cancer.

MDS Patient Support
MDS Patient Support

Share these images on social media!

  • To raise general awareness of blood cancers and MDS specifically
  • To encourage people to become blood and stem cell donors
  • To educate people on clinical trials and modern blood matching technology

Save these images onto your mobile phone and share them as widely as you can on Twitter, Facebook, Instagram or Whatsapp.

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

What is the impact of MDS on your family?

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A person’s health condition has a huge impact on the quality of life of the person, but also on their partner and family members. This impact has been largely ignored.

Researchers at Cardiff University have created a questionnaire, the Family Reported Outcome Measure (FROM-16), to assess this impact.

This questionnaire needs further testing and this can only be achieved with the help of people such as yourself.

The researchers hope this information will:

  • encourage improved patient and family care
  • help clinicians choose treatments that are better for the needs of the patient and family members.

Please help them by completing this short questionnaire. All answers will be kept anonymous and it only takes 5-minutes to complete!

 

The survey has two sections:

  • The first part is to be completed by the person living with a health condition.
  • The second part is to be completed by that person’s partner or family member.

It is important that both sections are completed.  Only people aged 18 years or over can take part in this study.

A big thank you from the research team at Cardiff University.

An amazing team run the Great North Run for MDS UK!

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We had an amazing team running for MDS UK Patient Support Group!

MDS Patient Support

You can still help our runners achieve their fundraising targets!

MDS Patient Support

Declan Brady

MDS Patient Support

Laura and Matt

MDS Patient Support

Harriet Kirby

MDS Patient Support

Emma Paine

We would like to give a BIG THANKS to our dear friend Nick Hall - who rode the Prudential ride for us in 2019. Nick spoke to his gym friends at Easy St. and ten of them have signed up to run for MDS UK!  Lucie Berwick and Jamie Ford, trainers at the gym, are also running for us. What a generous bunch of people. 

And another BIG THANKS to our dear member Steve Yeoman (who often joins our zoom calls) for convincing a friend. Steve used to run but was told to stop by his doctor as too much hard impact on knees.

Have a look at the highlights of the great event!

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You can make a GREAT difference to MDS patients TODAY

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WITH YOUR HELP, WE CAN HELP

Meet our hero Nick, riding from the far south of Cornwall to the Scottish Highlands

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From Land's End to John O'Groats for MDS UK

MDS Patient Support
On the 30th July Nick Harpur set off from Land’s End in the direction of John O’Groats.
He was planning to follow the GB Divide route, a 2000km (600km off-road) route that snakes its way up through England, Wales and Scotland via small lanes, drove roads and spectacular mountain passes, with 27,000 metres of climbing.
He would sleep in a bivvy bag (basically a sack) in bothies (basically a shack) and in the gardens of kind strangers he contacted via the Warmshowers cycle touring website, expecting to average approximately 12 hours in the saddle every day.

Joan's story

Nick wrote in his JustGiving page:

In January last year I learnt that Lydia’s mum, Joan, was diagnosed with the condition Myelodysplastic Syndrome (a rare blood cancer). As you can imagine, it has been a difficult 18 months for Joan and all of the family, and, whilst I can’t do anything to change Joan’s condition I’d like to seize the opportunity to raise some money and awareness for an organisation that can. 

MDS UK have been a massive support to Joan and the family throughout this really difficult period. I hope you can join me in attempting to repay just some of the kindness and love this inspiring and brave woman shows so many by supporting MDS UK.

Any donation you can give will make a difference to the impact that MDS can have and will be greatly appreciated.

Day 1: Nick at Lands End

MDS Patient Support

His first day on the bike

MDS Patient Support

Day 2: 153.64 km

Second day of Nick’s journey. As he crosses Cornwall he writes:

Shortest of the full days I have planned but it was brilliant. “Camel trail” a particular highlight, that and the pasty I had in Torrington. Need to prep myself for a 220km all the way to Chepstow tomorrow ?

Nick spent 6 months planning and training for this ride to ensure his route, equipment and body were in the best place they could be. Still, he knows there will be unexpected challenges along the way.

MDS Patient Support

MDS Patient Support

Day 3: 177.31 km – An eventful day

The biggest highs and lows of the trip so far, both literally and metaphorically. It started with an endless 25% climb up to the Old Brynmawr Ironworks, then a very enjoyable gravel climb up to an old quarry with terrifying views of “The Gap”.
It was every bit as hard as I feared, but so rewarding and beautiful, then I was hit by a big storm, dried off by climbing the Sennybridge military road before heading into the wilderness to find my bothy which involved an hour hiking through bracken (first big routing error!), 5 river crossings, and the most incredible road of the trip (and possibly my life) before finally being greeted by Moel Pyrsgau bothy in the woods.
Not a day I’ll forget in a hurry

MDS Patient Support

MDS Patient Support

Every day we post a new leg of Nick’s monumental journey in support of MDS UK. Come back tomorrow for an update!

A BIG THANK YOU to Nick for putting in such an incredible effort in aid of our small charity. We thank him not only for the fundraising, but also for the fabulous awareness of MDS he is generating.

Today, more than ever – due to Covid – we need generous people like Nick to help us assist MDS patients and their families.

Blood cancer: supporting mind and body

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MDS Patient Support

Surabhi Chaturvedi, Psychotherapist at King’s College Hospital NHS Foundation Trust’s Haematology Department, blogs about the emotional impact of being diagnosed with a blood cancer and the importance of supporting people’s mental wellbeing throughout the course of their illness.

Although all serious health conditions have a psychological impact, blood cancers present some specific challenges. Some of the treatments (such as Bone Marrow Transplants) are intensive and involve repeated hospital admissions and physical isolation due to risks of infection. Disruptions to life in the form of fatigue or graft versus host disease (GvHD, a condition where the donated bone marrow mistakes the person’s body as ‘foreign’ and attacks the host’s cells) can continue after treatment comes to an end. Lack of awareness can occasionally translate into a lack of understanding from caregivers or colleagues.

Helping patients cope emotionally

There is no fixed ‘template’ for coping with blood cancer that can be applied to all patients. Each individual’s response is a complex interplay of factors related to their illness (prognosis and treatment options) and personal/social factors (levels of practical and social support, previous experience of stressors, personality traits, and their existential or spiritual beliefs i.e. their thoughts about the meaning of life). Similarly, patient support needs don’t follow a specific timeline. Some people need support during the initial stages following diagnosis and others require support after the end of treatment.

Among a variety of emotions, a sense of loss can pervade the patient’s experience.

Although none of us has any guarantees about our futures, our natural human tendency is to have aspirations and make plans for the future. To an extent this sense of safety is necessary to participate in life and it can feel out-of-reach to someone diagnosed with a serious illness. With time, there may be a shift in this feeling but it is important to understand that this loss is felt very acutely by many people.

Patients often describe their journey as an ‘emotional rollercoaster’.

This metaphor feels accurate to describe the multiple physical and emotional adjustments patients (and carers) have to make. At the same time as processing thoughts and feelings associated with the diagnosis, patients have to face the practicalities of illness, including further investigations or treatment. The changes caused by side effects of treatment often have a profound effect on people’s sense of self or identity, and the personal and professional roles in which they have always viewed themselves.

Keeping friends and family informed can also be emotionally demanding.

Amidst all this, the picture of coping with a blood cancer can also include more positive emotions such as hope, or of gratitude towards loved ones and professionals.

Mark, a male patient in his 40s, was diagnosed with a blood cancer requiring a ‘watch-and-wait’ approach. His disease was not severe enough to require treatment, but his life was suddenly thrown into the shadow cast by the threat of cancer. Mark had suffered from anxiety in the past and the diagnosis re-triggered this. He found himself sleepless and preoccupied by thoughts about his deterioration and his death. Similar to other patients in his circumstances, this was mixed with feelings of confusion about ‘how to feel’. Therapy was helpful not only to treat Mark’s anxiety through coping strategies to regulate his emotions and de-escalate catastrophic negative thoughts, but also to learn to live with uncertainty. A year later, Mark's blood cancer did progress and had to undergo a stem cell transplant. He sought psychological support once more to cope with his six-week hospital admission when he suffered multiple physical symptoms. For now, Mark remains well and disease-free.

Distinguishing emotional distress from mental illness

Like any of us, people diagnosed with blood cancers can suffer from mental health issues such as depression or anxiety. However, viewing the process of adjustment through the lens of a mental illness isn’t always helpful because it can lead us to pathologise (treating something as psychologically abnormal) normal and valid emotional states. In a cancer setting, patients (and carers) can experience complex and extreme distress that doesn’t always coincide with diagnostic criteria for mental illness.

Moreover, people can appear ‘fine’ on the outside, but still benefit from therapy in order to process their experience of cancer and overcome significant barriers to psychological wellbeing. It is important to distinguish emotional distress from mental illness, and to offer support for both.

At the heart of psychological therapy is the ‘therapeutic relationship’ – a relationship based on trust, safety, respect, empathy and compassion. Research has shown that this relationship is just as important as the specific techniques or methods used by a therapist.

 

The role of psychotherapy in a cancer setting

Patients often wish to protect loved ones from pain and discomfort, and vice versa. Counselling and psychotherapy offer people a safe space in which to vent difficult emotions, speak openly about fears and worries or talk about the impact of side effects without worrying that they will upset someone or be judged.

A psychological therapist’s role in cancer settings is varied. It includes journeying alongside patients as they navigate the highs and the lows, and bearing witness to inevitable aspects of illness and treatment. We help patients identify specific psychological traits (thoughts or behaviours) that have unhelpful consequences (e.g. increased distress) but can be changed through insight and coping strategies. We support patients to retain or regain a sense of agency amidst helplessness and vulnerability. We are also trained to assess and help patients overcome depression, anxiety, post-traumatic stress or other mental health issues in addition to coping with cancer.

More Information

COVID vaccine efficacy and MDS: In conversation with Dr Austin Kulasekararaj

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Watch the video of MDS UK Zoom Cafe on the 19th July 2021

On the 19th of July we had an informative conversation with Dr Austin Kulasekararaj, Consultant Haematologist, King's College Hospital, London, on issues and concerns around COVID-19 "Freedom Day" and the efficacy of the Covid vaccine for MDS patients.
Watch the video and read the excerpts below.

"Patients with their immune system compromised have to be still extremely careful"

"Obviously today is a big day, it's called Freedom Day, but I think for MDS patients - and generally for the community of blood cancers or any other conditions with patients with their immune system compromised - we have to be still extremely careful.

It's great that quite a lot, if not most of the people on this call would have had both the vaccines. They will provide a degree of protection against getting severe COVID.

There is (still) a possibility of getting COVID, but the complications of getting severe infection, hospitalization and complications are going to be significantly reduced.

What we're all debating about is the degree of protection. I think that is the major question."

Dr Austin Kulasekararaj

Dr Austin Kulasekararaj

"We've screened around 40 patients after receiving the 2nd vaccination to see their protective ability.

In a couple of months we'll have some scientific data to see when is the right time to boost the vaccination and how long-lasting the immune response will be."

 

"We are now getting the data to understand how cancer patients' immune system responds to vaccination"

"Thanks to a number of people on this call we've been able to do a test,  the SOAP study, and test for your antibody levels and also other aspects of the immune system two weeks to four weeks after you've received the second jab.

We've screened around 40 patients at a specific time point after receiving the second vaccination to see their protective ability. You would have noticed that I did not use the word antibody, because antibodies are only one aspect of the immune system which is measured to look at the response to vaccination. But there are so many other aspects of the immune system which we are able to measure, including what is called the t-cells, which are another bit of the immune system which will look at the protective response against COVID.

The study is very interesting because that's sort of going to be the real world (question) going forward: you would have had two vaccines, you would have possibly had a booster, what is the chance that you could get severe COVID or get complications due to COVID? That is something which the SOAP study is particularly looking to understand.

In a couple of months things will be a bit clearer, prior to the planned roll out for an autumn booster or early winter booster of the vaccination, so we'll be able to have some data, some scientific data, to guide us, to see when is the right time to boost the vaccination and also to see how long-lasting the immune response will be."

MDS Zoom Café

MDS Zoom Café

"I'd say, if there is a halfway house between totally locking yourself in a room, being totally vigilant and not interacting, versus going all out and without a mask, if there is a halfway house somewhere, that's where we should all as MDS patients fit in."

Learn more about Covid vaccine efficacy and blood cancer

Visit bloodcancer.org.uk and learn what we know so far about covid vaccine effectiveness in people with different types of blood cancer. The page is updated regularly.

https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-vaccine-efficacy-blood-cancer/

Guidelines for the management of adult patients with myelodysplastic syndromes

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The British Society of Haematology has now issued their 2021 updated Guidelines for Myelodysplastic Syndromes (MDS).

These guidelines are written by experts in MDS and destined to be used by all UK haematologists to assist in the optimal care and treatment of their MDS patients.

These are guidelines, not rules, and the clinicians will adapt these to care for individual patients, depending on their exact sub-type, co-morbidities, circumstances and patient wishes.

Patients and families can of course read these guidelines, but remember these are not written for an audience of patients.

As patients or carers, we recommend you read our Patient Handbook, or browse articles and videos on our website, which are less technical. We will be reflecting these updates in our next edition of the patient handbook, due out in October 2021.

You can listen to the very good podcast by Dr Sally Killick, which is fairly accessible, despite also been aimed at a clinical audience.

Listen in particular to the beginning of the podcast, which clearly states that MDS patients should be seen by a haematologist specialising in MDS, and that every case should be discussed in an MDT (Multi-disciplinary Team meeting).

Silence Therapeutics

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The pharma company Silence Therapeutics organised an international event in June with their employees, their #MonthToMove, challenging the Silence team to get ‘moving’ for their partner patient groups, with a pound donated by Silence for every kilometre covered.

MDS Patient Support

The team collectively covered 8,558km, meaning Silence will donate £8,558 spread across their seven core charity partners. They also raised a further £650 via their JustGiving page, bringing the current total to £9,208. This means they will be donating £1,315 to MDS UK.

We are super impressed and very grateful to all employees for rising so energetically to the challenge, and to Silence Therapeutics for the ongoing support and commitment to patient charities.

MDS Patient Support

Silence Therapeutic aims at transforming the treatment of diseases through precision engineered medicines. Silence is advancing a new generation of medicines to potentially address the needs of patients who have limited or inadequate treatment options, MDS patients among them.

All the money raised will go to ensure that all patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition.

What needs to be done for rare and less common cancers? Join our Do you C us campaign!

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MDS Patient Support

Rare and less common cancers account for nearly half of new cancer diagnoses

They affect people of all ages, genders, ethnicities and locations. However, the nature of these conditions means that people can often face a range of issues, such as recognising symptoms, obtaining a diagnosis, receiving the most suitable treatment or getting appropriate levels of support.

‘Do You C Us?’ aims to unite Pfizer, Cancer52 and its member charities to raise awareness of the challenges facing people living with rare and less common cancers and highlight the need for change to address these.

Kes' Story: Watch the video

MDS Patient Support

"I first had strange blood test results in my early twenties back in the 1980s but it wasn’t until many years later that my GP started to investigate my continuing strange results. It took them two years of prodding and poking me before they diagnosed my condition. MDS, a form of blood cancer, is usually a condition older men get and so at first they thought there was something wrong with my pituitary gland and I was given a brain scan. Finally, in 2000, I was sent to Kings, a centre of excellence, and they confirmed I had MDS.

I was put on ‘watch and wait’ where the doctors monitored my condition rather than taking any action at that point. It is a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it."

MDS Patient Support

"Unfortunately, my condition progressed and I have suffered several bouts of sepsis, infection and flu. When all this started, I was a young fit football player. I never walked anywhere, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies. After all these years of cancer being my constant companion, I now live a very different life.

In October 2016, I had a stem cell transplant. My little sister was my donor. I am a priest in the Church of England, but I haven’t been able to work since the transplant and am living with many ongoing consequences of my treatment and cancer, including needing to use a walking stick, mobility scooter and hearing aids.

I count my blessings that I am still breathing. I am thankful to have seen my daughter and grandchildren grow up. I take things on the chin and get on with it. And I try to help and support others with the condition. I’m not just the sum of my blood results."

What are we asking from government and MPs?

What needs to be done for rare and less common cancers?

  1. In the NHS Long Term Plan, the NHS committed to diagnosing 75% of all cancers at stage 1 or 2 by 2028. In order to meet this target, improvements are required across all cancers – including rare and less common cancers.
  2. Work should be undertaken to identify people 'missing' from the system, including people with rare and less common cancers. People must be reassured that it is safe to come forward for treatment.
  3. Cancer must remain a Government priority. Cancer services and the cancer workforce, including those for people with rare and less common cancers, should receive sufficient investment and funding for the future. This must be set out in the next Comprehensive Spending Review.
MDS Patient Support
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