We (Still) Need To Talk About Paediatric Palliative Care

There are times when all of us take stock of where we find ourselves and think, ‘how on earth am I going to do this?’ I am truly privileged to have been given the chance to help change things for local children by working at Charlie House. Parents of children with complex needs are some of the most determined and inspirational people I have ever met.

Not only are they a mother or father; they are a nurse, a teacher, a physiotherapist, a carer, an advocate.  The list goes on…

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” Sophia Loren

So back to my first sentence, I now find myself at the heart of a huge campaign to give local children the care they so deserve.  With millions of pounds to raise and thousands of minds to change, in an increasing uncertain financial climate; we have our work cut out.

But I know that we will succeed.  Because I will not let us fail, there is just no other option.  I have all of the emotions and memories from caring for a girl with life limiting illness in my teens to saying goodbye to a little boy well before his time.  Every time I meet a child or a family and listen to their stories, it makes me more resolute.  Every family deserves to be happy.  Every child deserves the best care.

We can’t do this alone.  Some people may think it doesn’t affect them, or that there aren’t that many children in need of palliative care.  But it is a completely different speciality to adult palliative care.  As soon as a child is diagnosed with a life-limiting condition, they are in palliative care.  This may be diagnosed on an ante-natal scan, shortly after birth or in their teens.  Their life will be short, whether this is measured in days, months or years and so care should always focus on a child’s quality of life.

If you find yourself wondering how this could possibly affect you, I urge to think about who you know…  does your daughter’s friend miss a lot of school because she is in hospital?  What about the neighbour whose grandson visits in his wheelchair?  Or your friend whose twins were born prematurely and have spent months in the neonatal unit?  There is no shame in admitting that you weren’t aware of the plight of some of our friends and neighbours, I will be the first to admit that when I cared for a ward full of children, I was completely clueless.

Paediatric palliative care affects all of us and we need to work together to improve this care for our community.  We are incredibly lucky to have support from so many already; the companies who spend hours and hours of time providing their services and expertise at no cost, the crazy fundraisers who take a dip in the North Sea just to raise a few bob, the volunteers who have children with complex needs themselves, but still campaign for us tirelessly.  You are all wonderful!

So why don’t you join us and help us to make history.  Talk to us by calling 01224 218859 or e-mail me on sorcha@charliehouse.org.uk.  Let’s start talking about paediatric palliative care.

As one of my heroes Dr. Odontuya Davaasuren says, “life begins with love and should end with love.”


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