A Difficult Week

Dear all,

I hesitated before uploading this blog to our website.  I write this just one week after being nominated Clarins Most Dynamisante Woman of the Year 2008.  The award was featured exclusively in You magazine, the supplement to the Mail on Sunday.  It's circulation is 2.2 million.  Further to the feature, we have been inundated with requests for epilepsy alarms from parents with severely epileptic children.  We have listened to many heart rending stories; stories of babies and toddlers dying in the arms of their parents as a consequence of unstoppable seizures; lonely parents desperately trying to keep going in the struggle to manage their child's devastating epilepsy; and broken parents who have had little or no positive help from their consultant, GP or local authority.  Our donations on the other hand, have so far amounted to just two cheques for £10 and £100!

Whilst we are delighted that the PR has taken us directly to the coal-face, it has been a distressing week and to an extent, a depressing week, as the neediness of our cause has once again come home to us.  The initial excitement and the euphoria we anticipated following the presentation of the award in Downing Street was short lived.  We left the office on Friday evening, leaving empty boxes of tissues on our desks and wearing pensive faces, as we face up to the fact that the burden of responsibility for the Muir Maxwell Trust and for me, has increased. 

I came home to a newspaper article left for my attention on my desk by my husband - the Business section of the Sunday Telegraph, 22nd June, the same day as our feature in You magazine.  "The art of giving is being revolutionised.....Chris Hohn's The Children's Investment Fund Foundation (Ciff)  is leading the way,....with a new kind of philanthropy that includes forging links with governments that have converted projects into national policies.  The foundation is in talks with Britain's Department for International Development .......about large scale education projects in Africa. (The) approach has been criticised as aggressive and disruptive to other charities.  But (they) are unapologetic."  The article goes on.  The chief executive of Impetus (another new London based venture philanthropist company) says "Charities need more than money.  They need money and expertise deployed strategically.  The key task we face is...  to ensure that the benefits of wealth creation reach the poorer sections of the population."

All this coincides with a difficult week with Muir.  Monday morning was awful.  He woke from a deep sleep in a foul temper.  The first 30 minutes of the day were spent trying to calm him down.  These frenzied sessions, which are becoming more frequent, comprise kicking, head-butting, biting and slapping, smashing of crockery, upturning of chairs - anything in his path.  And then 30 minutes later, like a storm, its over and he is full of remorse - "Sorry Mummy,"  "Mummy fix it," which means mend the broken crockery!  Both Jonny and I have broken down this week as a consequence of his unmanageable and distressing behaviour.  We worry about the future for all of us.  His legs are not good.  Yet, it has taken six weeks to get agreement to a referral to an orthopaedic specialist who is ready and willing to see Muir but the system is full of red tape that results in reluctant referrals.

In the meantime, one of our beneficiaries, a little boy age 6 fights for his life in intensive care.  His family are keeping vigil by his bedside.  No one knows what to do next as seizures ravage his brain. Another Mum meets me for lunch.  She can't stay long.  She looks tired and distressed, near to tears as she explains the difficulties she is experiencing with her son's special needs school.  This week I learnt of consultants refusing patients access to our DNA service, even though Dravet Syndrome is suspected - their reason, cost!  I learnt of consultants refusing to countersign our vouchers for epilepsy alarms.  I even heard that one consultant, when asked to explain more about their child's newly diagnosed epilepsy, told the parents to go home and look it up on the internet. When I asked an adult epilepsy nurse how many children there were with epilepsy in Scotland she said these statistics were unknown, and not relevant to an extent as most children grow out of childhood epilepsy.  I wish!!!!  One Mum, whose child with epilepsy has grown up, called to say "It doesn't get any better.  It just gets worse as the children grow up."

Epilepsy is the oldest condition known to man.  It is also one of the most misunderstood and under resourced.  On a scale of 1 to 10, the support we have in this country equals a 1.  Privately, "the great and the good" have shown huge support to the Muir Maxwell Trust and for that we are extremely grateful.  Their support on a personal level is what has got us to where we are now.  And I do believe this new kind of philanthropy has a place but I wish they would look to home occasionally, where our own system is desperately failing our children with epilepsy and their parents, regardless of means.  We need specialist paediatric epilepsy and respite centres across the country.  If only these great philanthropists could forge a link with our own government and develop a project that could be converted into a national policy!  

I might be the Clarins Most Dynamisante Woman of the Year but it isn't easy raising a child with severe epilepsy, even for me.

 Ann Maxwell