Mission possible
My son Andrew was four months old when he died of sudden infant death syndrome (cot death) in 1990.
At that time there were few agencies who could help and the Scottish Cot Death Trust, which now does excellent work with parents, had only recently formed.
So as a father I have experienced at first-hand the pain of going through my own son’s death without the specialist support that a children’s palliative care team can provide.
And as a doctor with 35 years medical experience, 20 of which have been dedicated to CHAS, Scotland’s national hospice service for children, I see every day what a critical role these teams play in supporting not just a child whose life is cut short, but their wider family too.
It’s this experience, both personal and professional, that motivates me to help improve support for families who have a child with a life-shortening condition, to give them practical support when their child is at their end of life and after they have died.
I share all of this, not with the intention of making this story about my family or myself, but rather so you can understand one of the reasons I’m driven to do the job I do, and so you can understand why it’s vital that CHAS reaches every family that needs our support.
It’s one of the hardest things in the world to hear that your child has died or even before this, that they have a life-shortening condition – the reality in Scotland today is that there are 15,400 families facing the hard truth that their child’s life might be short.
It was only recently that we knew this number and, sadly, it was far higher than we ever estimated.
It was thanks to the Children in Scotland requiring Palliative Care (the ChiSP Study), commissioned by CHAS and conducted by the University of York in 2015, that we were able, for the first time, to understand the challenges we were facing.
The 15,400 was a sobering moment, and there was another figure that stood out for us.
Three children die of a lifeshortening condition each week in Scotland and, sadly, CHAS is currently only reaching one. I believe this must change.
At CHAS, we are determined to reach every single one of them, because every day my colleagues and I hear from families about the difference our care makes in their lives.
As a medical professional, my role is to offer clinical expertise, compassion and the reassurance that we will be there to support the whole family, wherever and whenever they need us, no matter how short their time together may be, or whatever the hour of the day. This may be a small consolation during the most difficult times but one that every family facing this terrible situation should be given.
In 2017 in Scotland, every family who needs it should have access to this care. Of course, since The ChiSP study, the questions I am often asked are, why is there an increase in the number of children and how will you reach them all.
Firstly, there a number of factors including advances in medical and nursing support, and with many children with complex needs now living longer than previously expected.
I expect the number to continue to increase and CHAS need to be able to continually respond to that demand.
And that brings us to the how. Reaching every family is dependent on one key thing – we need to raise more income.
The truth is at present we don’t have the funds to reach every family – yes, we have the desire but we need the finance to make it happen.
We need to match the funding we receive from the Scottish Government if we are to care for more families and that’s why earlier this year we launched Keep The Joy Alive, our fundraising drive that will need to at least double our income. Over the past 25 years since CHAS was established, we have raised over £116 million and majority of that has come from the Scottish public. They’ve backed CHAS and the families from the very start and we need them to give again.
Families need care when they are in their own communities – to make everyday life that bit easier.
To allow them some of the same choices and care that they experience at our hospices, to take some of the demands of being their child’s 24 hour carer for just a few hours – enabling parents to be just ‘mum and dad’.
And that is why increasing our presence in communities across Scotland is at the forefront of our work.
As Scotland’s national children’s hospice provider and a leader in children’s palliative care, we will lead from the front. But we can’t do this alone. It needs everyone in Scotland to get behind this – to support us with their donations so that we are with the three children who will die each week from an incurable condition.
We can all make sure that no matter how short the time a family has together may be, it is filled with happiness and joy.
Please show your support for the work of CHAS by making a gift today and don’t forget to include your CHAS alphabet name tag and message of support, included in today’s CHAS insert. www.keepthejoy.org.uk.