How to save a life

If you've just dropped into the blog and are short of time, I'll make the answer to the above question really quick and easy for you.

1) Go to this link: http://epetitions.direct.gov.uk/petitions/35788

2) Sign the petition, please.

3) Don't forget to verify your signature by clicking on the link that they send you by e-mail.

I did it, and it took about 30 seconds, all in. That's not much to take out of your day to do something that could actually save lives, is it?

If you've got a bit longer, let me tell you what all this is about. This week a review concluded with the decision to recommend the closure of Leicester's Glenfield heart surgery unit (along with Leeds and Royal Brompton in London). This was despite 60% of those who responded to the review voting for a different configuration that would keep Glenfield open.

My interest in this comes from the fact that my brother in law Atilio Lotto is a paediatric heart surgeon at Glenfield. They have fought so hard against this ridiculous review of services (why review something that is working?) and, in doing so, have brought so much interesting information to light, most of which has been overlooked. Getting enough signatures on that petition would force MPs to debate this in parliament and finally take a proper look at the information. 

One important thing that seems to get missed in all the reporting of this, however, is the really vital, central issue - the impact on the parents. I look at my two healthy, beautiful children and I can't imagine having to cope with the terror of having a child who is dangerously ill. As I complain about the problems of juggling two kids and work, it doesn't enter my consciousness to consider the people out there who are juggling a child undergoing major heart surgery, involving months in hospital, sometimes another child (or children) at home, a need for stability and to earn money and a need to be by their child's side because they could lose that precious child at any moment.

Then, think for a minute about how much harder that already traumatic juggling act would be if their nearest heart surgery unit was closed, and services moved hours away across the country. Think how they'd feel even when finally bringing that child home, knowing that help is so very, very far away, should they need it.

That brings me to Albert (gorgeous boy above). I want to share a picture of Albert. I am not somebody who believes in distress campaigns (you know, abused puppies to get money for the RSPCA or whatnot), so I'm not sharing this to shock, but because I think that, if you're anything like me, it's all too easy when you hear about heart units closing not to think about or even be able to comprehend the realities. It's a distressing image even for those who don't know this baby, but here's the reality - this is little Albert during his treatment at Glenfield Hospital, Leicester.

 

Albert came through this enormous operation, thanks to the skill of the team at Glenfield, but he will need ongoing surgery throughout his life. His dad, Adam, has set up a charity called Keep the Beat, and shares his thoughts here on the impact that this review will have on their family:

"I’ve been used to shocks that rock my world since I first heard the words:

“I’m sorry, your son appears to have heart failure.”

That was August 8, 2009. From then on, we as a family have lived with fear for Albert’s survival as his condition cannot be cured. Albert has hypoplastic left heart syndrome and, in reality, only has half a heart. For almost the past three years, we have relied upon and become regular visitors at Glenfield Hospital, as the excellent staff there have literally kept Albert alive.

They have carried out the most complex open heart surgery on Albert on two occasions and the plan was for another operation to be done there soon.

Now we face uncertainty on an unprecedented level. I doubt many of the decision-makers have the experience of being a parent of a child with a congenital heart defect. I doubt any of them have looked their child in the eye and thought they were losing them. I doubt they look at their child sleeping and check they are still breathing through fear that this day could be the last.

I believed in the review from the start, I put my trust in these people to make decisions that were best for the children and best for the parents across the country. This has not happened.

I look back and I was naive, and felt these people truly cared about my son’s future, along with the children born in the East Midlands now and in the future. It’s clear now the review team have no empathy or understanding of the issues for a parent with a child who has a long-term congenital heart defect.

They never really asked me for my opinion, they said they sent a questionnaire – I never got one. They asked parents how far they would travel for treatment and I understand most said “to the moon”. What they did not ask parents was that, in view of the fact that all centres can deliver services above the bar, 'what is most important to you as a mum, dad or a family?' Of course, the answer is: travel times.

Hopefully, cardiac children’s lives in the East Midlands are not at risk more today than they were yesterday. Hopefully Albert’s chances have not reduced. Time will tell, but I’m sure the review team will sleep well tonight. I doubt I will."

 Without wanting to turn this post into too much of a marathon, there's also the question of the ECMO (extracorporeal membrane oxygenation) service, a highly-skilled process which is currently expertly operated at Glenfield. If discontinued, this service would move to Birmingham, placing an untold strain on the care offered there (my friend's little girl had heart surgery in Birmingham and my friend speaks so highly of the service - I would hate to see a skill-heavy, bed-intensive process such as ECMO downgrade the quality of care that they are able to offer to children there).

Finally (I promise!), I just want to share the official statement from Giles Peek, Senior Consultant Surgeon in Leicester:

"Some of you may have heard that the paediatric cardiac surgery unit and paediatric ECMO unit at Glenfield Hospital in Leicester (EMCHC) has been earmarked for closure following the review of paediatric cardiac surgery (Safe & Sustainable). This is despite our excellent clinical results for our surgery and ECMO in children. I believe that the government has made a mistake in recommending closure of our unit because this will mean that ECMO provision for children will not be as good if we close. This will directly translate into the deaths of between 10 and 100 children per year. Please could you help to protest against the closure of our unit by completing this on line petition?"

http://epetitions.direct.gov.uk/petitions/35788

 

 

Comments

[Kathryn Batten]

This is such an important issue and it is essential that Parliament has an open, honest and above all transparent debate about the heart units and in the greater picture the NHS. We are blessed to have it and it needs to be fought for!

[Philippa Hammond]

I've signed, of course.