Tomorrow is a hugely significant day for all parents in England who have a child with a heart defect. The process is called the NHS Safe & Sustainable review into children’s heart surgery and amongst many things it will decide which Heart Units will retain a surgical function and which will not. It is not my intention to use this blog to state my opinion of which Units should stay open, but rather to express how I feel the whole Review has affected us.
As a parent of a child with a potentially life limiting heart defect, I spend every day worrying it will be the last I see our beautiful son Sebastian. Every evening I kiss him on the head and pray that he will wake up in the morning; wishing all the time that I could take away his condition or transfer it to myself. The reality of this existence is that it requires you to give every emotional fibre to stay upright; what I have left I put to good use with fundraising for CHUF (Children’s Heart Unit Fund at the Freeman Hospital). So consider throwing into the mix the threat that the Unit that saved your child’s life may no longer exist and you will appreciate it becomes too much to cope with. It’s not fair and it has put an unbelievable amount of strain on us and other heart families.
The purpose of the Review is not to save money and is in no way linked to the current economic crisis. The process was initiated after a number of children died at a heart unit over 10 years ago and it was decided that such a critical medical area should have a formula, something that would improve the care of children with a heart defect regardless of where they lived in England, and most importantly would improve survival rates for decades to come. There are many aspects of this review beyond which surgical units will remain open or not; unfortunately no one seems interested in these.
During the public consultation parents have been asked many impossibly difficult questions and whilst I understand the importance of engaging with those involved in any chosen outcome, what could I possibly know about the best way to configure children’s heart surgery services? The emotional attachment I have to my son and to those who saved his life mean that my opinion cannot possibly be in the best interests of others. Ask me questions about aspects of a community based nurse network or how GP’s could be better educated in congenital heart defects, ask me what kind of support groups would help us to deal with what we have been through, but don’t ask me questions I’m not qualified to answer.
I have seen this Safe & Sustainable process cause ‘heart’ parents from different units to have full blown arguments on social media, I’ve seen hard raised money being left in charity bank accounts because the uncertainty of the unit has not allowed long term investment, and now I am seeing politicians getting involved. ‘Heart’ parents should be supporting each other not fighting, funds raised to help these amazing medical facilities should be spent and politicians have no right or understanding to get involved. Long after the politician has lost his/her seat or retired, children’s heart surgery will continue, so do me a favour and stay out of it!
So when the announcement is made in London tomorrow it will bring to an end the 2nd most stressful period of my life (Seb’s health obviously being number 1). You will not see me jumping up and down if the Freeman gets the nod, rather I will look for ways to embrace those families from Leeds into our ‘family’ and be thankful that we can finally move on with our lives.
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