Stacey Whiteley (left) with her son, Logan, who benefitted from Glenfield’s heart services in 2010, at just 11 months old.
— Health Secretary Jeremy Hunt has requested a full independent review of childrens heart surgery in Parliament today, October 22, as part of lengthy discussions into the closure of heart units across the UK. One such unit affected by the consolidation of heart surgery is Glenfield Hospital in Leicester, which serves the Lincolnshire community.
Stacey Whiteley from Lincoln, and her family, are at the forefront of the campaign to save the Leicester hospital due to their own son needing the help of surgeons in Glenfield. Without families like the Whiteleys, a petition with more than 100,000 signatures to save such hospitals would never be brought before Parliament for review. Here, Stacey explains the background of the decisions so far, and why she is campaigning to save Glenfield Hospital.
In July 2001, an enquiry into children’s deaths following heart surgery in Bristol was published. One of the recommendations was to ensure that there were fewer, but more concentrated, centres of expertise. This means that surgeons work in larger groups and are able to support each other. In theory this is a very good idea. The safe and sustainable review started nearly three years ago, aiming to look at the best way to reconfigure the service.
On July 4 2012 the steering group presented their findings to the Joint Committee of Primary Care Trusts (JCPCT). The decision was to close the centres in Leicester, Leeds and the Brompton. Surgery was to continue in Southampton, Bristol, The Evelina Children’s Hospital in London and Great Ormond Street in London, Liverpool, Birmingham and Newcastle.
Shortly after the JCPCT meeting on July 4, families felt the need to petition the Government to debate the proposed changes to Children’s Cardiac Surgery and subsequent effects to the ECMO service at Glenfield in Leicester. This was when many staff, parents and patients were at their lowest. They were reflecting on the devastating news that they felt had not considered their opinions or indeed dealt with the facts of the review. This was when the e-petition was set up to demonstrate the strength of feeling.
Alongside cardiac surgery, there are several other procedures that are run from some of these units. These are procedures that are highly specialised and not performed as frequently as surgery. These are called Nationally Commissioned services and are transplantation, tracheal surgery and ECMO (Extra Corporeal Membrane Oxygenation). The Minister for Health is responsible for deciding who can offer these services. On the July 13 2012, ECMO was moved from Glenfield to Birmingham.
The ECMO machine is very similar to a heart-lung bypass machine used for open-heart surgery. The machine and circuit has an artificial lung, which provides the patient’s blood with oxygen. Their blood is taken out through a tube or cannula, run through the ECMO circuit, warmed and filtered, then pushed back round the patient’s body to keep them alive, while their lungs and/or heart have time to recover. These are usually the sickest patients. The survival rate of patients receiving ECMO at Glenfield is around 50%-75% better than anywhere else in the UK, and one of the best in the world.
It also offers the only mobile ECMO service, where children and infants are collected by a highly specialised team, put on ECMO and then transferred to a suitable bed. These are the sickest children and ECMO will be there last chance of survival. This service is to be lost if the recommended closure of Glenfield goes ahead.
As local parents, we have experienced the exceptional service at Glenfield first hand. Our little boy Logan (3) was born with four heart defects: a condition known as Tetralogy of Fallot. Logan’s condition did not get picked up until he was six weeks old, when he was taken to the GP for suspected cold-like symptoms.
It was the GP who detected the sound of his heart was not as it should be and sent us immediately to Lincoln County Hospital. He underwent numerous tests and it was not until a week later we actually sat down with the Paediatric Consultant, who gave us the news our baby Logan had a congenital heart defect, which needed major open heart surgery for him to live. News that made our world come crashing down. The months that followed were a whirlwind of emotion, and we felt we were living in a bubble that could of popped at any point if Logan went into heart failure.
Logan’s care, like many others from our region, was immediately transferred to Glenfield Hospital in Leicester as Lincoln Hospital does not have the facility for children’s heart surgery or the expertise, skills and knowledge that comes with that.
Logan had his open heart surgery in April 2010 at 11 months old. He suffered a collapsed lung and infection post surgery but he amazed everyone with his determination, strength and recovery being discharged only 6 days after surgery with just painkillers and anti-inflammatorys as pain relief.
Logan continues to have checkups and may need further surgery in the future, but for the moment nothing is holding him back. He has been brought up knowing about his poorly heart and is very proud of his special scar down the centre of his chest, which he refers to as his zip. He is our inspiration having been through such a lot in his little life.
It was because of our experience with Logan and our time at Glenfield that we felt the need to give something back. We got involved in children’s heart charity Keep the Beat and at the same time raising awareness of children and families affected by congenital heart defects specifically within our region. This has since grown into campaigning to save children’s heart surgery and ECMO at Glenfield and collecting signatures for the epetition where possible. We were one of the Lincolnshire families that joined MPs and campaigners from all over the midlands in a silent protest in Parliament Square, London in September.
The forgotten county
We need to save this unit for the sake of children everywhere not just now but for the future. The children and families of Lincolnshire already travel to a non-local unit, and if the decision is not overturned families from our region face travel to Newcastle, Birmingham or London, depending on their postcode. Lincolnshire is so often the forgotten county with poor rail links and rural roads.
This decision could cost lives not just in the county but the UK. Glenfield’s skills, expertise and experience cannot be replicated anywhere else. National and international experts are shouting their concerns, and we hope that these will now how the opportunity to be heard.