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Midlands Patients’ Group

Midlands Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

Come and join this brand new group in the Midlands region!

A few words from Sophia, Midlands Group Coordinator:

"I started to learn more about MDS following my Grandad's diagnosis back in 2017.

Looking back on this period I recall the uncertainty and isolation that followed the knowledge that this was a 'rare' cancer. Having heard of the success of the other regional support groups, I was determined to bring this initiative to the inevitably large patient and relative population of the Midlands region. I appreciate the potential for such a group to provide that unique degree of comfort that is necessary alongside the standard medical care.

Having completed my Medical Sciences degree I am now spending the year working in research at the Queen Elizabeth before returning to university to begin my medicine degree. My mum has also worked within the trust for the past 20 years. Together, we are both very familiar with the hospital and its welcoming environment. Looking back to the time when I knew very little about MDS, it is incredible to now be able to set up the very first Midlands Region Support group. I hope these meetings provide a friendly platform to gain the necessary knowledge, guidance and support that remains individual to every person living with MDS and their loved ones.

I look forward to meeting many of you!"

All local patients are welcome to attend, as are relatives and friends.
This is an opportunity to get to know one another, share experiences and increase the support network in the area.

MDS UK CEO Sophie Wintrich and Sophia Taylor, Midlands Group Coordinator

MDS UK CEO Sophie Wintrich and Sophia Taylor, Midlands Group Coordinator

First Meeting Poster

First Meeting Poster

Location:
Seminar room 1 - Education Centre - Queen Elizabeth Hospital Birmingham, Mindelsohn Way, Edgbaston, Birmingham, B15 2GW
Find it in this Map

Email:
midlandsgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

MDS UK Patients Forum

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

Join the Prudential 100 and raise money to help fight MDS

Join Team MDS at Prudential Ride London-Surrey 100 for the experience of a lifetime

Prudential Ride London-Surrey 100

Prudential RideLondon: the world's greatest festival of cycling

We wanted to you be the first to hear that registration is now open for Prudential RideLondon and we have 15 rider places this year!

A true legacy of the 2012 Games, this year's eighth edition will take place over the weekend of 15-16 August 2020.

Ride the Prudential RideLondon-Surrey 100 – a 100-mile challenge on the same closed roads as the professionals, with the added incentive of raising money to help fight MDS.

Important!

  • We have only 15 places. Not all applications may be accepted
  • The registration fee is just £45!
  • While registering you pledge to raise a minimum of £600 for MDS UK Patient Support Group through your participation in the event.

Read the complete MDS UK Terms & Conditions for a guaranteed place

If you'd like to take this challenge and fundraise for us, please fill in this form!

Prudential RideLondon Conditions of Entry

I accept Prudential RideLondon Conditions of Entry

I accept MDS UK Terms & Conditions for a guaranteed place


MDS UK London office has re-opened on January 6th

Happy New Year to you all. We've reopened our office, after a short break, on Monday 6th January 2020.

Our contact details

Telephone: 020 7733 7558
Email: info@mdspatientsupport.org.uk

Our aims

  • To provide a networking service through which those newly diagnosed with MDS may share their experience with fellow sufferers.
  • To provide a help and advice telephone line 5 days/week
  • To organise national patient information meetings with specialist speakers
  • To help patients create small regional support group meetings, to meet informally, and hear presentations from nurses and doctors.
  • To distribute information and raise awareness of MDS among patients, carers and health care professionals across the UK.
  • To provide access to a list of UK consultants, specialising in MDS.
  • To develop and maintain a website, providing the latest information on MDS, its diagnosis and treatment options.

Have a look at our coming local group meetings

Learn more about the latest research on MDS


A Christmas song by Ben Liverman & 5HillsOut in memory of his mum Anne who died from MDS

For those who don't have a picture book Christmas and to fight materialism

Derbyshire Folk-Punk band 5 Hills Out are releasing their first ever Christmas single ‘Snowfall’.

Ben explains about the song:

“Snowfall is about fighting materialism and wanting to spend more time with family. It is for the people who don’t get the picture book Christmas and also the people who spend it alone, or fighting to survive in hospitals or on the streets. The chorus is about wanting the snow to cover up the broken towns and how a lot of people turn to drink to cover their problems at this time of year. It may sound depressing but the song is full of hope, heart and the overall feel is one that wishes for a better new year."

Snowfall - 5 Hills Out. Watch the video

Sophie, the CEO of MDS UK tells us:

"We assisted the family in the summer, as Mum Anne struggled with treatment.
We were so very sorry to hear she had passed away and offer our sincere condolences to the family.
The aim of this song is so important as many will be spending time in hospital, or like Ben's family, some will have lost a loved one to MDS or another type of cancer.The song offers support and caring thoughts. Thank you for sharing or even acquiring this song for Christmas."

Snowfall single cover: Buy it online!


Living with MDS: Top Tips

Dealing with Emotions, Managing your Diet and more

Having MDS will have impact on your daily life. Each person will cope in their own unique way.

Not everything in this gallery will apply to you, but there might be feelings that you are familiar with. It is hard to directly "change an emotion", while thoughts and behaviours are more easily changed.

We hope you try some of these tips, those that suit you best. They can help you to gain back control. The way we think affects the way we feel.

(Click on the images for more information)


A Festive Message from MDS UK

To all those awaiting results; those newly diagnosed; those undergoing treatment; all those with loved ones who have MDS; all those recently - or not so recently - bereaved; to those in remission, and to those given the coveted all-clear.

We wanted to let you know that we will be thinking of you this festive season, and we send you our commitment and love.

And to all those who are contributing to MDS UK Patient Group, a big big Thank You. You are essential and amazing.

Take extra good care of yourselves.

MDS UK team and Committee Members

PS: Sharing a photo we took in Twickenham, with our fantastic patron Caitlin Limmer, Chairman Ted Peel, fundraiser extraordinaire Moni and her husband (who run the delicious Hei Hing restaurant), CEO Sophie Wintrich, and Kent group coordinator Andy Veitch (left to right)


Researchers at Queen’s University Belfast receive the 1st scientific research grant awarded by MDS UK

Queen’s University Belfast was awarded the first scientific research grant from MDS UK to improve treatment for Myelodysplastic Syndromes (MDS), a type of bone marrow cancer.

Myelodysplastic Syndromes (MDS) are a form of bone marrow cancer whereby the bone marrow gradually fails to produce mature healthy cells. In some patients, MDS can progress to Acute Myeloid Leukaemia (AML), whereby the abnormal cells grow very rapidly, building up in the bone marrow and blood.

The grant has been awarded to Professor Ken Mills, Dr Kienan Savage and Dr Katrina Lappin, a leading cancer research team from the Centre for Cancer Research and Cell Biology at Queen’s University Belfast. It will build on recent discoveries by Queen’s researchers that cancerous cells from a large proportion of patients with MDS, particularly those that progress to AML, have a DNA repair defect.

The researchers have identified the most common genetic mutations that drive this DNA repair defect, revealing a significant number of mutations that control how DNA is structured and the way that genes are “stitched” together to form the final blueprint for making a protein (a process known as RNA splicing).

Professor Ken Mills, Dr Kienan Savage and Dr Katrina Lappin

Professor Ken Mills explains:

“To date our research has examined the molecular consequences of mutations in RNA splicing and DNA structure genes, both of which can have an impact on the way that DNA is repaired. A DNA repair deficiency can be manipulated to enhance existing or novel therapies to improve outcomes in elderly patients.”

The new research grant will further explore the role of deficiencies in DNA as a therapeutic target, particularly during disease progression.

Professor Mills added:

“We are delighted to be the recipients of MDS UK’s first scientific research grant that will enable us to further investigate the impact of DNA repair in MDS particularly on disease progression from MDS to AML.

“Through this research, we will be able to identify the best treatment plans for patients, which could result in reduced disease progression and improved patient outcomes.”

CEO of MDS UK Sophie Wintrich explained:

“To date, alongside crucial advocacy work, enabling access to treatment, MDS UK has provided close to 2800 MDS patients, carers and families with essential quality of life support, information and advice, via our helpline, patient meetings, newsletters, booklets and our website. It is particularly exciting for our organisation now to be able to add a research project to our core services.

Kes Grant from MDS UK added:

“As a committee member of MDS UK, as well as a patient diagnosed with MDS 20 years ago, I am really excited about this venture into research. We tend to think about research in terms of data. What we are really talking about is resetting the DNA of people and these people are partners and parents, aunties and grandparents, workers and friends. Imagine how many people could benefit from a breakthrough like this.”

MDS UK Chair, Ted Peel explains:

"Patients suffering from MDS know the broad and bewildering variation of MDS sub types. Current available treatment is supportive, but not curative. These wide variations make research difficult. When added to the relative rarity of this blood cancer, which in itself can limit potential research, the process of identifying exact causation and possible cures are rendered particularly difficult. Thus, despite ongoing research across the world, we at MDS UK have decided that in the interest of MDS patients, and future patients, we should use our limited funds to enter the world of clinical research.
After following a thorough process to identify a possible research project, MDS UK are delighted to have awarded a grant for a four year Ph.D project to Professor Ken Mills and his team at Queens University Belfast. The nature of the research is explained in the press release from the Queen’s University Press Office and is one which could have a wide application if it were to prove successful. We wish Professor Mill’s team and, of course, the Ph.D student selected, every success in their endeavours and look forward to working with them.
We hope that this will be the first of our funded clinical research projects, but this will depend very much on having the continuing resources to fund such undertakings. We thank all those who have so generously supported us in the past and enabled MDS UK to take this bold step. We look forward to keeping you updated and hope for your continuing support to help to finance the current and possible future initiatives."

The £173,000 research grant to fund a 4-year PhD studentship has been made possible thanks to legacies and donations from patients and families affected by MDS.

With your help, we can help

We are able to run MDS UK Patient Support Group thanks to donations from individuals and businesses, and grants from pharmaceutical companies.

MDS UK does not receive any grant or assistance from Government or Trusts.


Eden organised a fun Cèilidh Fundraising Event in aid of MDS UK

Cèilidh Fundraising Event 16 October Poster

On the 16th October Eden Sheldon organised a fantastic Cèilidh Fundraising Event in aid of our charity.

The evening was a lot of fun and Eden managed to raise an amazing £271.21!

Eden told us she is looking forward to doing some more events in the future, which is immensely generous of her.

We are grateful to Eden and her friends for organising this event which helped not only to raise funds but also to raise awareness of MDS with the general public.

Raising Awareness of MDS

You can also make a significant difference to our small charity.

Maybe you have a particular talent or skill, or you know someone with useful contacts? Here is an A to Z list of Amazing Fundraising Ideas

Every single fundraiser will be absolutely worshipped!

With your help – we can help.

Many thanks from the MDS UK Team


MDS UK Patients’ Poems on MDS World Awareness Day

The 25th of October is MDS World Awareness Day

Throughout the day, MDS UK and the international umbrella organisation MDS Alliance will posting on social media moving poems by our dear MDS UK member, Kate D, and other MDS UK members, written on the theme of living with Myelodysplastic Syndrome. 

I long for a cure one day

by Kes Grant

Myelo Dysplastic Syndrome the thief that stole my life
Myelo dysplastic syndrome my nemesis and daily strife.
The gift that keeps on giving from sepsis, fatigue and blood
To platelets, GCSF and transplants
I sometimes wonder how I’m stood
I long for a cure one day

Myelo dysplastic syndrome you have my body but not my spirit
I will strive, and wriggle and struggle,
my mind strong as I go through it
My family suffer as do my friends and that I really hate
Seeing the pain and worry on their faces as they wait to hear my fate
I long for a cure one day

 

 

Chemo and transplant offer a possible cure for some
You think all is well then GvHD comes along
Now my quality of life is poor and often rotten
I spend weeks and months feeling awful
Not wanting to hit rock bottom
I long for a cure one day

Strangely I can say it’s not always difficult and bad
People rally round and that makes me glad
I’m glad to be alive to see the grandkids grow
And I remind myself I’m still breathing when I feel low
Keep breathing Kes till they find that cure

My Day Starts

by Kate D.

My Day Starts as
Many Dawns Stretch
over the horizon
and beautify the sky
with shades of
Magenta, Damson and Sky-blue.

Then I remember –
My Disease Sits with me -
every day- not as comfy
as I’d like, but
My Dear Spouse
is there to support me
through appointments and
More Doctors’ Suggestions.

My Doctor States that
positivity is helpful
and that I must be
Mentally Determined to Survive.

I hear of others
Making Daily Strides.
Some wait for Marrow
to be Delivered Soon from
those Marrow Donor
Superheroes who enable us
to say that Many Do Survive.

More Delightful Sunshine
beckons; a world of warmth
in attitude. as virtual friends
support and encourage,
Many Dreams Surface,
hope is given;

May Dreams Succeed in
Assisting acceptance of
Our disease.

So, My Day Starts and
Perhaps My Daily Struggle,
With friendship and support
Means My Day is Sorted.

I’m alive, alive, alive.

By Chris Davis

I opened the door this morning and,
The garden was full of birds,
Birds singing, chirping, washing, flying, laughing,
They were in amongst the flowers,

The flowers of all colours alive with movement,
In the light breeze, as if dancing with the joy of life.
I looked up and the sky was blue, deep, deep blue,
With puffs of cloud floating, suspended, white,
Like giant cotton balls, always moving onwards.

 

 
The sun was smiling and so warm, yet,
Tempered by the light caressing movement of the wind,
The same light wind that gives life to the flowers,
The beautiful flowers.

I cried when I saw the birds.
I cried when I saw the sky,
I cried when I felt the sun and,
Was touched by the wind, and,
I cried when I when I saw and felt,
The sheer beauty of the flowers.

Then I looked at it all again,
And I cried out,
“It's good to be alive, to really be alive.”

7.35 to Waterloo

By Chris Davis

Squeaking along,
In a train full of meat,
Going to to London,
God knows who to meet,

No one is talking,
They are all on the phone,
They need that connection,
To prove they're not alone.

Friendship

By Kate D.

Friendship is my medication.
A hug, a look;
language that is not used
or known by those who
are not in the know;
caught up in the new
jargon that this
disease offers us.

My despicable cancer
has enabled new friendships,
renewed old and erased others.
Around coffee cups we sit,
or we walk and talk about…
all sorts; sometimes
cancer, sometimes not.

I am after all, a normal person
trying to accept what
has had to become
my new normality.

Heart and Soul

by Chris Davis

No, I don't believe we'll part,
Never, ever,
Ever you'll be my lover,
My shoulder when you suffer,
My soul is yours,
And yours is mine,
Even when we have no time,
And we lay together,
In peace forever.

 

 

 
On earth it was the the time to meet,
And find our love,
Is forever deep,
Enough to greet,
The final rest,
The final breath,
The final beat,
Within our breast.

Heavy Luggage

I waited at the station with my little case on wheels,
I worried about lifting it because of the heaviness it feels,
Then the thought of you waiting patiently at another end,
I knew that I could do it and not disappoint a friend.

I waited at the airport with my iphone in my hand,
Not to take a photo because I wasn’t feeling grand,
My little case on wheels sat beside my chair,
My heart felt torn in two and I felt some despair,

Soaring through the sky I felt at peace with life,
Down below the toy town cars glinted in the strife,
Magic fairy lights all twinkled on the map of France,
As the airline staff started their aisle feeding dance.

 

 

I leave behind a piece of me each time I hug goodbye,
To my son, my two daughters, my grandchildren, how I cry,
One in London, one in Spain, one resides quite near,
But parting isn’t easy from the ones you hold so dear.

I waited on the ward for my treatment that is free,
With gratitude I wonder how they donated it for me,
We always take for granted all the things around us,
Until one day a wakeup calls us to a different bus.

Now each day is precious even though I am so tired,
I want to be an astronaut that never is retired,
I want to take my little case and visit every place,
It gives me hope to help me cope with a smile upon my face.

Watch and Wait

By David McIntosh

I’ve got Blood Cancer!
Don’t worry it’s just low risk
Only Watch and Wait

Invisible

By Kate D

“You look well” you say,
brackets, (“for someone with cancer.)
And I think,
“Do I?
Do I really?
Because I don’t feel well at all.”

Peel off my steroid mask,
The wig and the rosy drug induced glow,
And you will see pain
And sing a different tune.

If I wore a scarf on my head,
turban - style, had a plaster cast or a
walking stick,
You would know .

I haven’t.
So you don’t.
But let me reassure you,
if you could feel the pain in my joints,
shooting as a bullet does
minute by minute,
or worse,
suddenly
taking you unawares.

If you could feel
legs and arms like jelly
refusing to obey commands.

If you got stuck and
and had to phone
for help.

If you lost all your independence.
If you had all those things, then
you would know and never
say those words to anyone -
again.

How are you?

By Kate D

Do you really want to know how I am?
Are you interested in
how I’m feeling today,
yesterday and tomorrow?
Then be prepared to listen.
Not with a sideways tilt of your head
and a look of sympathy with
nodding accompaniment.
Not with “I know” or
“I knew someone who…”
“My mum/aunt/sister/ brother/
cat and dog…"

If you ask the question
It deserves investment;
Investment in time
to find out that, actually,
I’m not ok,
that life is rubbish.
That for me,
my life has been lived.
Are you prepared to find out
about my suicidal thoughts,
my pain, my anger and grief?
Or are you being polite and feeling that
you have to ask, that it’s the right thing
to say?
And the answer you want is,
“I’m fine” or “Ok”.

Today

By Kate D

Today I can
be in the sun
and absorb its warmth,
eyes shut ,
listening to everyday
sounds or
sit and read,
drink coffee;
being able to linger,
not gulp it down in haste
before the next thing
I must do.

I can bake scones,
watch the sunflowers
open their petals
to the early morning sun,
gently walk by the river and
listen to the breeze in the grasses,
the running of the water.

I can notice colours in flowers,
(in close up),
faded and bright
side by side, being
visited by bees and butterflies
who hover over the buddlia
dipping antennae into
the flowers one by one.

I can notice the patterns and shapes
of their wings,
see the shapes of the clouds and
watch as they shift
from white to grey.

I can take my time to
look at paintings in a house
nearby without rushing to be at
the next thing on my list.

I can do these things today.
Tomorrow, who knows?
But today I can.

scones

Have you?

By Chris Davis

Have you someone who loves you,
Waiting when you die?
Or will you be alone,
No one t!ovate, or cry.

Will you spend forever, without love,
And all alone?
Or someone who love you,
Making forever a happy home?

Have you spread your love around,
To the people who surround?
Or used your way through life,
Leaving pain or needless strife?

Today, have you told someone"I love you"
And held them in your arms,
And made them feel safe, warm,
Protected from life's harms

Hell is where the loveless go,
To rot through to the core,
But that is not for me, nor thee,
For our souls will love, forever more.

scones

Chemotherapy at home: less visits to the hospital and better quality of life

Research FOR Patients

-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Written by Janet Hayden - Lead Myeloid Clinical Nurse Specialist - King’s College Hospital

MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital.

The first one was a report about the MDS International Symposium in Copenhagen, which she attended thanks to a travel grant from MDS UK. The symposium included a 1 day nurse programme, attended by nurses from several countries.

Janet says:

It is important that those of us lucky enough to attend these events get the opportunity to share that learning and knowledge back at base camp and especially to the MDS patient community who may not readily have access to some of this knowledge via other forums . So I have attempted to summarise some of these main points which may be of interest to you.

Janet says:

The program this year was heavily scientific. The presentations showed the ever increasing complexity of both evolution of MDS and the diagnosis. it is clear that the science has moved on tremendously in the past decade. The list of somatic mutations acquired in MDS is ever growing and the understanding of which of these genes does not respond or does respond continues to evolve. Challenges remain due to the heterogeneity (patients having more than one acquired mutation) that presents major challenges for treatment strategies.

A large team from Denmark presented their news and developments for patient services. These services included a Chemotherapy at Home, or mobile chemotherapy option, enabling patients to lead as normal a life as possible, whilst receiving their treatment. It also covered a patient peer to peer support scheme, as well as an exercise regime to help boost energy for AML and MDS patients.

Chemotherapy at Home scheme at King’s College Hospital

Her second talk introduced the Chemotherapy at Home scheme that will soon be in place at King’s College Hospital.

Click here or on the image to read and download Janet Hayden's presentation.

The Benefits for Patients

From the patient point of view there are a number of patients who struggle with travelling and travel costs. They experience long waiting times, increasing time off work for the patient and their carer.

In addition, the fact that they do not need to stay at the hospital environment while receiving treatment reduces their risk of infection so patients may choose chemotherapy at home to avoid the regular trips to the hospital.

The Benefits for the NHS

Moving care out of a hospital setting, is an important goal for the Institute’s and the broader NHS. There is evidence that it improves patient experience and quality of life, while reducing NHS burden and costs. As it releases capacity from busy outpatient clinics the scheme will help to improve NHS ability to deliver effective care.

The scheme has proven to be the preferred option by patients in Birmingham and other areas. Both King's College Hospital NHS and Guy's and St Thomas' NHS Foundation Trust staff are very supportive of the initiative, citing the positive impact it could have on patients.

Chemo at Home could be financially sustainable, and cheaper for the Institute than traditional clinics.

Chemotherapy at home in Spain

Would like to speak to KCH MDS nurses Janet Hayden or Geke Ong?

As ever, if you would like to speak to KCH MDS nurses Janet Hayden or Geke Ong, they are available during our MDS meetings at King’s.

These meetings are free and open to all patients in the UK.

The next London meeting is planned for 18th November. Click here for details of our next London Meeting.

Click here for dates and venues for all our patient meetings in the UK.


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