Closure of the East Midlands Congenital Heart Centre (Glenfield Hospital)

[Rosebank]

Dear all

I hope you don't mind me sticking this post on here, but I think you will agree it is for a very good reason!

My little boy has recently had open heart surgery to close a large hole which he was born with.

He is one of a set of twins and was conceived via ICSI and IVF at Nurture in Nottingham.

This hole was detected at my 20 week scan and myself and my Husband had to make a decision on whether to terminate him or continue with the twin pregnancy. This decision was a tough one, as we were pretty much told he could have Downs Syndrome or possibly worse.

Well, we decided that we had spent so many heart wrenching years waiting for our twins, that we would let mother nature make the decision...

... Charlie was born healthy apart from the large hole!!

At his second year checkup the Consultant Cardiologist was not happy with the strain on his heart and we were pushed up the list, resulting in a weeks notice to take him in for his op.

He has recovered amazingly well from the operation and it has well and truely saved his life.

The staff at the Glenfield Hospital were so kind and caring and we were able to stay at the Hospital with him for the week he was in there.

Unfortunately the Government has ruled this week, that Glenfield must go and will not allow any further surgery to take place - regardless of the Heart Link Charity already paying for an additional wing for parents to stay and play facilities costing £250,000.

This decision is unbelievable and will risk the lives of children living in the East Midlands and even further afield.

I ask for your support by way of you signing the e-petition (the link is below) and hope that you never need the support of the staff at Glenfield - but rest assured, if you do, your child will be in EXACTLY the right place to get the care they need!!!

We NEED this hospital folks and I hope you will spare a few minutes to sign the e-petition.

epetitions.direct.gov.uk/petitions/35788

Thank you for your time

Amie

It's worth mentioning too that the services at Leeds General has/will be closed too so the east midlands has been hit north and south. The options will be Birmingham or Newcastle - 3 hour and 4 hour drive respectively from some parts of Lincolnshire.

Yes, runnin - I was going to say the same thing about Leeds. For all those affected by the closure of the heart surgery sites the issue is more or less the same - even in London where the distance is much smaller but journey times much greater.

Rosebank, so glad to read your story and that your ds is now doing so well. In the case of Leeds, I believe (from my MP's Twitter feed) that there are concerns the review did not follow its own process properly and discounted evidence that should have been admitted. Do you know if there are similar concerns about the Glenfield?

I must read more about it - currently leicester do satellite clinics for routine check ups for our locality and I wonder if this service will also end. I guess I can understand them wanting to make sure patients are accessing high quality specialist care but how that weighs up against the impact of travelling for the patients I don't know.

I'm afraid governments, of any complexion, don't give a toss about the use of charitable donations. They have no respect for facilities and units that only exist because people raised the funds themselves.

There is a good point behind the review - that surgeons need to carry out a certain level of operations in order to keep their skills up. However, the decision about how to arrange services so surgeons have a big enough caseload in all the different sorts of procedures they must carry out is complicated - it's a choice made by the senior people in the Dept of Health and ministers. And all sorts of NHS internal politics will have come into it.

And you have to balance the need for enough casemix to keep surgeons' skills up against the need for people to be able to use those services - something four hours away is not terribly accessible. How are they going to help parents to stay near children needing heart surgery? How will parents manage if they have to abandon their homes/other children/wider families/jobs for large stretches of time in order to be near their children?

This is quite an interesting article (and I do apologise for hijacking the OP's thread about Leicester with Leeds info) - "Fourteen million people are within two hours of Leeds; only three million are within two hours of Newcastle."

Not, I should stress, that I would want the Newcastle unit to close either as that leaves a large gap in provision in the north of England that couldn't necessarily be mopped up in Scotland.

What Edam said.

I had heart surgery as a baby in the mid-70s and they sent me to London as the place I was born didn't do it back then. Ever since the Bristol enquiry this decision has needed to be made - and no one would make it because the need for babies to live was considered less important than local politics.

I am glad it is being made. I have no view on the location thing other than that there has to be balance between distance & quality. And New Zealand (for example) has only one centre - right at the far end of the country in Auckland; Australia similarly has massive travel times, as does much of Scotland, away from the central belt.

I've been hearing alot about this on radio leicester this week.

Its not so much the extra travelling distance that is the issue (although obviously thats not great) but also Birmingham doesn't even have enough capacity for what its doing at the moment so is currently having to send patients to Glenfield so how will they cope with more for the short term (long term they are expanding by 50%)

The most important issue seems to be that glenfield is a world leader in a technique called ecmo which in very simple terms (and my basic understanding) is the next step up from life support and is for very very sick children (and also adults). Under the planned changes they are going to move the ecmo unit however another specialist from sweden was predicting this would cost the lives of 50 children over 5 years as you can't just move the unit and it will take time to build it up again. Currently they have 100 specialist nurses, many of which will not be able to just up and move to Birmingham, so this will mean training up new nurses and apparently they could only do about 10 a year

I'm the mother of a child with a heart defect. Thankfully it's unlikely to need surgery. Had she needed surgery I would want it done by the best, most experienced, crack team the country can offer. Centralising services will achieve that. The Bristol scandal shows how badly parents can be let down by teams that aren't at the cutting edge.

From what i've heard due to the ecmo service glenfield have a 20% higher than average survival rate