Action Duchenne (formerly PPUK)

Upcoming event:

Face to Face with Duchenne Conference 2008, Register today for our conference 2008 on Oct 31st/Nov1st

Register »

Action Duchenne meets with Health Minister Ann Keen

  • July 14th 2008
  • Posted by Nick Catlin at 20:15pm

Carl and Ann Keen (with ann keen.jpg)

Carl Tilson lets Ann Keen Minister of Health know all about Duchenne

"Allow me to introduce myself, my name is Carl Tilson, I’m a 21 year old young man living with Duchenne Muscular Dystrophy and I’ve came here today to talk about the effect that this horrendous disease has on individuals and there families.

I’ve had dreams of becoming a professional footballer like my granddad Fred Tilson who played for England & Manchester City Football Club in the 1930’s.  His main achievement was scoring two goals in the 1934 cup final beating Portsmouth 2 – 1, I would have loved to carry on my granddads legacy playing football but unfortunately that will never happen.

I’m already on borrowed time living past expectation being 21 years old, I’ve been living with Duchenne for 20 years now; I have had to have a rod put into my back at 16 because my back was beginning to curve so spinal surgery was needed – there was a risk that death could occur with this operation. I have to use a ventilator at night, I need 24/7 care! I can’t even enjoy food anymore which is very difficult to face because food is one of life’s pleasures and I really enjoy food, I’m fed by a tube through my stomach because of my muscles in my throat have also deteriorated! Which being fed by tube isn’t what you would call very comfortable! I also have problems with holding my urine because of weakness in my bladder which is embarrassing and spoils my social life.

Another problem I have is I can easily lose control of balance and it makes me feel crippled and useless, I can’t even put my arms up to my face.  Problems with not being able to enjoy a meal & bladder weakness, does that sound like fun?
It’s hard to enjoy life like this…

I’m afraid to die from this death sentence on my head; it’s like being innocent but on death-row, the face of death staring into my eyes every single day – being the age that I’m at I wonder each day will this be the day that I die. I should be out enjoying my life, going to college, contributing to society, thinking about my future career not sitting around deteriorating, dying, thinking bout when I’m 6 foot under!

Living with DMD … everyday it same old heartache, get up in morning have a feed, I used get up decide what sandwich I wanted with a packet of crisps. Watch TV having a curry for tea. I miss food the most – sometimes being like this I wish I was dead.  I don’t care about rules & regulations, especially when it’s a matter of life or death, I need a treatment as soon as possible or I’ll die. Simple as that!"

Carl was part of a delegation that met with the minister following the debate between Duchennne champion MP's Nigel Evans and Dave Anderson with Health minister Dawn Primarolo.

Parent Doron Rosenfeld from the Gavriel Meir trust presented their excellent video including footage of Mark Styler talking about living with Duchenne. Parent Bernard Mooney spoke about his son Ben and showed recent film of his son. Carl was supported by his parents and Action Duchenne advocate Esther Derber.

Ann Keen was visibly moved by Carl and the other presentations. She told Carl that she had already spoken with Lord Darcy about him and that they wanted to invite him to take part in Lord Darcy's NHS review.

I argued through our key demands for ring fenced funding for research and for more centres of excellence in the UK. Again the important argument to make is that research and medical care are not separated by a brick wall. They should always be looked at from the point of view that the best medical care for a complex condition like Duchenne needs to be advised by the best research and science. Funding science means getting the best possible medical care for our sons.

Our scientific research projects are impressive and the head of the DoH research funding team Peter Sneddon recognised that we were exactly in agreement with their policy of funding translational research. Unfortunately he was stuck in the old broken record of not agreeing to ring fenced funding but did concede that the DoH would look very favourably if our scientists put in bids to the MRC or DoH. Ann Keen asked for a review of the research and clearer guidance on what the DoH and MRC would fund.

Ann Keen was very interested on how we might be able to develop hubs of specialist provision across the UK. She was very concerned that both Bernie Mooney's family and Carl's had to travel to Newcastle from Manchester to get even basic physio support. Ann Keen has promised us a review of the centres of excellence proposal in our document "Duchenne research into the clinic".

The minister also promised to chair a further meeting to resolve the issues that we have raised. I argued with her that we should have a round table meeting to put together a directive from the DoH to spell out a new policy that will show to Duchenne families how the new Treat NMD Duchenne standards of medical care will be implemented in their areas. I will be arguing that this should mean expanding on the centres of excellence based on the models and Great Ormond Street and Newcastle and that we have proper provision for both young and older young people living with Duchenne.

Today was another step forward following our letter writing and lobbying. But as Dave Anderson MP told the minister none of us want to be back here in a years time having lost Carl Tilson to this terrible condition. The time to act is now and both our champion MP's Nigel Evans and Dave Anderson have promised to keep up the pressure on the minister and DoH for further action.

 

 


7  Comments


  1. julia ascott
    July 14th 2008
    22:22pm

    congratulations to the Action Duchenne delegates on a very positive and strong argument. This is where we see the fruits of all of us attending lobby and keeping in touch with our MP's. Things are moving in the right direction. Well done everyone!

  2. Ian Griffiths
    July 15th 2008
    01:08am

    Well done delegates, a well put arguement Carl, lets hope they listen to us finally!

  3. Annette
    July 15th 2008
    08:56am

    This is like a cliff hanger. My heart is pounding eagerly waiting for more news! Seems like a productive day was had. I just hope they do something about it this time! However, I still dont get how they can say they dont ring fence funds when quite clearly they do! Well done Carl, you're a star!

  4. Paul Ackroyd
    July 15th 2008
    12:55pm

    Well done everyone who went yesterday, especially you Carl, that was a very moving presentation (again!). It is vital we keep up this political pressure to drive forward the treatment/cure we need for our family members and friends. Once again, thank you all and well done.

  5. esther
    July 15th 2008
    20:29pm

    Carl did an amazing job yesterday and gave the whole meeting a true insight into living with Duchenne. From my opinion Ann Keen was not only very interested but also from the things she was saying really wants to help us. We also gave Ann copies of all the pictures that were sent last week. Hopefully this is the time the government will sit up and take notice. Carl - I know what it took for you to get to London yesterday and I know that it is appreciated by everybody living and affected by Duchenne. You are such a fighter and inspiration (& you really kicked ass in your suit). As well as keeping up the political pressure we can all take responsibility with fundraising - this really does make a difference. We now have advocates across the country who would love to work with you in putting on an event or give you any help or advice on any type of fundraising. We are also looking for companies (big or small) to support us by electing Action Duchenne as charity of the year. If you can think of any companies that would fit the bill please let us know. The Advocates are Vici for NE & Scotland, Julia SW & Wales, Natalie for Midlands, Matthew for London & SE and you can contact me for NW or any general fundraising ideas. E-mail firstname@actionduchenne.org Recently the government "ring fenced" an amount of money for Motor Neuron Disease, this was match funding of the amount raised by the charity. Let's all work together to raise as much money as possible. Carl, Nick, Bernie, Doron, Fred & Linda I was honoured to be in the meeting with you yesterday and so proud to be a part of Action Duchenne. We will get there!

  6. Mark Silverman
    July 15th 2008
    22:41pm

    Ditto all the above. Great job Carl - lets hope you won over the minister and that she can really raise the stakes amongst her ministerial colleagues.

  7. Jannette
    July 15th 2008
    23:36pm

    Well done! What more can I say? I know we are all impatient for things to move faster, but It's amazing to see how far we have come over the last few years, we just have to keep the pressure on.

Add your comment

You need to login or register to make comments.

Previous posts

    • 13 April 2008
    • Dying in Silence

    • "The Government fully accepts that everything possible needs to be done to bring an end to the tragic impact Duchenne Muscular Dystrophy (DMD) has on individuals and their families." Prime Minister (Gordon Brown) Office 31st October 2007.What makes this statement so important is that at last someone in the Government has heard of Duchenne!

    • 04 December 2007
    • National Stem Cell Network

    • Action Duchenne were asked to join a meeting of the National Stem Cell Network steering committee today. www.uknscn.org .