Have a Heart

This morning I’m handing over my blog to a special guest.

Regular readers will know that I am involved in campaigning to save the NHS. It’s easier said than done, with so many areas of it under threat. I try to use my energy to promote local causes and to champion patients, as often they’re the ones listened to last, if at all, when decisions are made.

Leicester currently has three hospitals. One of them, Glenfield, has one of the finest heart units in the country. It was threatened with closure three years ago. Now it’s threatened with closure again. NHS bosses say that it isn’t performing enough operations to justify keeping it open, while totally failing to take into account the specialist services that Glenfield offers that make it unique and valuable, not just to the people of Leicester, but to patients all over the UK who come here for help. It is renowned for the life saving work it does with babies and children. That work is under threat.

The powers that be are ruthless in their desire to put saving money above saving lives. This morning I want you to read Shirley’s story. When you’ve finished I’d like you to sign the petition she talks about. These people are not just numbers on a tick sheet and we need to have a full, transparent consultation about what happens to them. Please help us to make that possible. I know some of you share some of my posts. Please share this one today.

I am the mother of what we refer to as a heart child. His life was saved by the skill and dedication of the staff at the Glenfield Children’s Heart Unit.
I was what was known as an elderly mother, to be fair I was 43 when I had him. 
I had more or less given up hope of ever having children when I had his brother four years previously, so to be able to be able to have a second much longed for child, was something I never expected.
He was a few weeks premature and a low birth weight but apart from that there were no issues detected initially. However, within a few weeks I knew there was something wrong. He struggled to take enough feed, and it took ages. he would feed for an hour and sleep for an hour.
I kept saying I thought something was wrong but everyone just kept saying all babies are different etc. Eventually he had to go back into hospital as he had what later turned out to be breast fed jaundice. 
During the initial examination, it was noticed that he had a heart murmur. No one told us this until we had been admitted to the ward, and even then it was by a very throw away comment by a doctor. I knew that this could mean something serious or nothing at all but it took four hours for another doctor to come back and explain what it could be, and that we were being referred to the Glenfield to get it checked out.
Aged six weeks we were seen by the most wonderful consultant at the Glenfield who explained that he had a condition called Teralogy of Fallot, which effectively meant he had four things wrong with his heart.
I don’t remember being shocked or frightened or any of the other emotions I think I should have had. What I do remember is the kindness and compassion of that consultant. He gave me a leaflet with all the info I needed, and his direct line telephone number to ring him when I had taken things in and needed more information. What I also remember is that he told me categorically that this was not my fault and that I was not to blame myself. I came to totally trust this man but I have to say it was years before I stopped blaming myself.
Four weeks later we were back at the hospital for a check up and we were told that they were going to look at his blood sats and if his oxygen levels were below 75% he would have to stay in for an operation. They were 57%.
This time the fear kicked in. The next morning I handed my tiny little baby over to the skill of someone I didn’t know. Then I knew what real fear was. 
He made a quick recovery and his health improved. However, he then faced nine hours of open heart surgery at sixteen months to correct more of the issues with his heart. This was a dreadful time. It is the only time my husband and I couldn’t speak to each other. What could we say? Please let him live and be OK? 
We also had to face trying to telling his older brother what was happening as I would be away from home and staying at the unit. It took all my self control to respond calmly when he asked if his baby brother was going to die.
I have seen lots of photos that other parents have taken of their children when they came out of surgery. I made a conscious decision not to take any pictures in hospital as I didn’t want the last images I had of my precious boy looking like this, in case he didn’t make it.
 
I cannot tell you the care we received as a family from every single member of staff on the ward, from the surgeon to the ward cleaners. They were wonderful and so understood how we felt.
Over the years, he has had other smaller procedures.  Hospital appointments, tests, MRI scans, ECGs and Echo cardiograms became a way of life for him and us. His first MRI was when he was very little, about six. The nurses asked him if he would like any music played while he was having his scan. I think they were expecting something wildly different, judging by their reaction when he responded ‘ got any Status Quo?’ . He got Monsters of Rock on the condition he didn’t head bang.
My lovely lad took everything totally in his stride and he has never allowed his condition to dominate his life. He is enormously proud of his scars, which are extensive, and has no embarrassment about showing people or talking about it. He has been quite proud of having the accolade of being the kid with the most impressive scars at every school he has attended.
He had his last open heart surgery just over four years ago. He was thrilled when the surgeon told him his heart had stopped three times during surgery and was disappointed he had left school and wouldn’t be able to go back and talk about ‘what I did in the holidays’. He reckoned dying three times beat Disneyland Florida hands down.
A week after coming out of hospital he collected his exam results, and a week after that he was able to enrol on a Performing Musician course. He is an accomplished drummer and guitarist, so the house is never that quiet.
He will need more surgery as he gets older to replace heart valves, and while I say that his wife can worry about that, I know that I will still be as scared as I was when he had his first op at ten weeks.
He has matured into a talented, kind, caring,intelligent, funny and compassionate human being. I am enormously proud of him, although there were times during his teenage years, when he drove me to distraction and he still has an aversion to tidying his bedroom and putting things away. 
Why am I telling you this?
He received all of his care, and still does, at the Glenfield Children’s Heart Unit. This unit cares for children from the East Midlands, and frequently from further afield. 
NHS England announced out of the blue, in July this year, that all children’s surgery would cease at the Glenfield as well as at Manchester and the Royal Brompton and Harefield in London.
The Glenfield is a world renowned unit that has pioneered many innovative surgeries. It has some of the most skilled surgeons in the country, as well as having an ECMO unit. ECMO stands for Extra Corporeal Membrane Oxygenation.
The Glenfield was the first unit in the country that had ECMO and it still offers 50% of the national capacity. It is the only unit in the country that works with adults as well as children. The funds to purchase ECMO were raised by local people and it has saved the lives of many people from all over the UK.
If the intensive care at the Glenfield is closed, it will have disastrous effects on other local children’s services, and this impact has been severely minimised by NHS England. There is already a lack of intensive care beds nationally, and this will have serious implications if even more beds are taken out of the system.
Parents have been advised that if the Glenfield closes, children will have their surgeries at Birmingham. Logic dictates that this will only happen if Birmingham has an available bed. It could mean travelling form the East Midlands to one of the other units that have not been earmarked for closure. Newcastle, Leeds, Liverpool, Bristol , London or Southampton. 
The next logical conclusion is that if there is a child in any of these areas, they could well end up in a unit hundreds of miles from home even though they have a local unit, due to lack of beds.
Additionally, the impact on an already overstretched and under resourced ambulance service, will be enormous if they are also to have to ferry seriously ill children with heart issues, all over the country.
The population in the East Midlands is increasing and we need far more children’s cardiac beds, not less.
If this closure goes ahead, there will be no Children’s Heart unit on the Eastern side of the country, and the East Midlands will be the only area of the country without it’s own designated unit.
Since the announcement in July, NHS England backtracked after the inevitable public outcry, and have now said that no final decision has been made and that there will be a public consultation.
Public consultation will be expensive and place further financial burdens on already stretched NHS resources. Having seen previous so called consultations, I am convinced that it will be worded in exactly the right way to achieve the response NHS England wants.
There is an online petition, calling for a review into this decision. Most of you will  not live in the East Midlands but I urge you as a mother who knows all too well , the stress of having a sick child, to sign the petition asking for a review into the decision to close the Glenfield.
The petition can be found at : 

22 responses to “Have a Heart

  1. Signed and shared with great sadness at what is happening to the NHS. 😔

  2. Signed.

    My son had a heart murmur at birth which proved to be nothing. We did not have to travel for his check ups, for which I was so grateful. Good luck with your campaign.

  3. Signed. I feel as if I’m a bit of a professional petition-signer these days. I hope it’s not always an empty gesture.

    • It’s so difficult isn’t it? I think we’ve all got petition fatigue. What makes me livid about this one is that we actually have about sixty thousand signatures including the paper ones, but it now transpires that the government will not accept a mix of paper and online petitions and they will only allow us to transfer the paper names to the online petition in the most ridiculous way, accepting ten entries per person logged into the system. Given that we have about thirty thousand signatures on paper, that’s not possible. They’re denying people the right to democratic process by utilising a sneaky loophole they don’t make clear and not accepting that one campaign often needs paper and online petitions because when you’re on the ground with patients you don’t always have access to a computer. I’m determined that this is one petition that will get through if it kills me!

      • i’m shocked. Are we now only to present petitions whose every page is totally identical? Is the assumption that everyone’s on line, or alternatively in the high street/hospital when a paper petition’s in circulation? Another breathtaking example of the eroding of simple democratic rights.

  4. Very well written. Very powerful. Also for those who dont know the campaign web site is here http://saveglenfieldheartunit.org.uk/

  5. Jane Mickelborough

    signed, shared on FB. This must be stopped

  6. Signed, I seem to be signing an average of 3 a day at the moment, many of them NHS related. It has been under threat before but I have never been so afraid as I am today. I think this government has seen an opportunity to kill it off in the aftermath of brexit, thank God there are people like you fighting to stop them. I’ll be with you on the barricades if it comes to it – promise!

  7. Victoria Fisher

    Done…. good luck and much success….

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