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Changes at children’s heart unit a positive move, says charity

— Updated with a comment from local heart charity, Keepthebeat.

The Children’s Heart Federation, a heart charity specifically for child conditions, said that the changes to surgery at Leicester is a positive step.

As previously reported, a number of Lincolnshire residents and parents have been fighting a decision to stop children’s surgical procedures for heart conditions in Glenfield Hospital.

They argue that changes to surgical procedures in the unit will mean families in Lincoln will have to travel to London, Birmingham or Newcastle to receive treatment, meaning extra stress and travel expenses for families.

There is a petition, with 55,000 signatures, trying to save the heart surgery services at the hospital, despite the decision being made on July 4.

A Lincolnshire County Councillor for Lincoln also hit out at the plans, branding them “perverse”.

The Children’s Heart Federation however feels that the closure of some services at the hospital will result in better care for families.

Safe and sustainable treatment

In a statement, the charity said: “CHF has received many calls over the years from parents around the country saying that their child’s operation had been cancelled at the last-minute.

“The parents don’t want to complain because they know their child’s heart surgery had been stopped in order to treat another child admitted as an emergency.

“They simply want to talk about how difficult this experience is emotionally for their family and how they were going to have to prepare themselves to do it all over again.

“It is because of calls like this, as well as years of contact with parents, that CHF has actively campaigned for improvements to children’s heart services.

“The changes have been driven by surgeons, doctors and nurses whose professional associations supported a new set of national quality standards to ensure the highest quality of care for all heart children.

“The standards require each surgeon to carry out at least 100 operations a year so that they can maintain the necessary level of experience in what are incredibly complex procedures.

“Because there are only around 3,600 procedures a year, and this is remaining relatively stable, this means that not all of the current units are sustainable.

“For some parents who may have to travel somewhat further for their child’s surgery, it is important to stress that many families from across the country already travel for surgery.

“This is done safely and effectively and travel times were considered during the changes. It is also important to highlight that only around half of children with heart conditions will ever require surgery and of those who do around 90% have only one operation.

“It is really important that parents and the public understand that no hospital or unit is closing. Whilst surgery is stopping at three units, including Leicester, cardiology services will continue to be offered.

“These changes are in no way about cost cutting but about delivering even better services for children. The changes will result in excellent services closer to home through the development of new congenital heart networks where expertise and information is shared across hospitals.

“We understand the feeling and local support for each unit, but we believe that the new standards and networks of care will provide safe, sustainable and excellent treatment for all heart children both now and in the future.”

Jim Birrell, Interim Chief Executive at Leicester’s Hospitals, said: “We have instructed clinical and legal advisors to give us their opinion and, as we previously stated, we particularly want to make sure the advice given to the decision makers regarding the ECMO service has been fully taken into account.

“In the meantime, the team continue to operate under the principle of ‘business as usual’.”

— Update on August 10 at 9.45am:

Lincolnshire heart charity Keepthebeat have responded to the Children’s Heart Federation’s comment. A spokesperson for Keepthebeat said:

“It has not been a big surprise to read the comments from the CHF. They came out and declared their support for Option B before the final decision was made by the JCPCT. During the public consultation phase, 60% of the respondents wanted the option with Glenfield in it (option A) as this was what the review showed as being the best for the country as a whole. The remaining 40% were divided between 3 other options. The charity is based in London which will be covered by two surgical units in all viable options. They have been heavily criticised by their members for their lack of support throughout this review.

“Many of our Lincolnshire families already face travelling to Leicester, yet it is these families who are going to be expected to travel yet further again to Birmingham, London or Newcastle.

“Families tell us how stressful it is balancing looking after a child who may be in hospital for weeks or months at a time with holding down a job as well as trying to care for and maintain some normality for other siblings. The proposed changes are going to magnify the challenges these families already face.

“Although a lot of people push the point about the fight for Glenfield being a local issue, the services they provide are important for the whole country. As well as providing childrens heart surgery, Glenfield is one of the world leading ECMO centres, the biggest in the UK and with one of the lowest mortality rates in the world.

“The survival rates of patients requiring ECMO are 15-20% higher at Glenfield than any other centre in the UK. ECMO is a form of life support for the sickest patients, and Glenfield currently provides this service to children and adults throughout the UK, and parts of Europe.

“International experts have condemned the recommendation to close it, some saying that over 5 years it will result in the unnecessary deaths of over 50 babies and children.

“Birmingham Childrens Hospital have openly admitted they have never provided respiratory ECMO before and yet this is what they are apparently going to take over from Glenfield.

“Interestingly the Health Scrutiny Committees from both Lincolnshire and Leicestershire have referred the matter to the Secretary of State for Health Secretary, Andrew Lansley for review by the independent reconfiguration panel.

“The referral from Lincolnshire follows serious concerns about the proposals not being in the interests of the health service in Lincolnshire. Specifically these concerns are the impact of the closure of the Glenfield Children’s Heart Surgery Unit on Lincolnshire families, in terms of clinical safety and accessibility; the impact of the removal of the Extra Corporeal Membrane Oxygenation (ECMO) equipment from Glenfield to the Birmingham’s Children Hospital; and the decision making process of the Joint Committee of Primary Care Trusts.

“It is vitally important that members of the public sign the e-petition to save children’s heart surgery and ECMO at Glenfield Hospital to show the level of public feeling and to ensure a full parliamentary debate on the matter.”