Supporters of the Yorkshire heart unit are being urged to make their voices heard as health chiefs take another step forward to shape its
Huddersfield parents and doctors – including Linthwaite mum Gaynor Bearder and Edgerton based doctor Sara Matley – became embroiled in the controversial battle to save the children’s heart unit at Leeds General Infirmary after the NHS threatened to close it in 2011.
The so called “Safe and Sustainable” review left parents of vulnerable youngsters with the prospect of having to travel to Newcastle or Liverpool for treatment for their children.
The service was temporarily closed in March last year, just days after it was saved in court amid fears the death rates were too high. But it was later proven the unit was safe and the concerns had been based on dodgy data.
Now NHS England has vowed to wipe the slate clean and has created a new set of standards for all children’s heart units.
Parents and supporters are being urged to make their voices heard at a series of events taking place across the region this month, aimed at ensuring surgery for babies, children and adults with congenital heart problems stays in Leeds.
Gaynor, whose son Joel, seven, has twice had life-saving surgery at the Leeds unit, is helping to run an event in Bradford.
She said: “I am really thrilled that following our long and difficult fight to retain children’s heart surgery in Leeds, we will finally be able to put forward our views in the new review.
“Retaining these services is vital to all heart children; losing the service could mean the difference between life and death for some. We are well aware that Joel will need at least two more open-heart surgeries.
“We want those to take place in the Gold Standard heart unit in Leeds, where we have every faith that he is in the very best hands and receiving the best care. We need everybody to make their opinions heard and help retain Yorkshire’s only children’s heart surgical centre.”
Figures show that 10,000 youngsters passed through the doors of the Leeds unit last year and events are planned for Sheffield, Leeds, Hull, Bradford and York. The new standards cover 13 areas including communication with patients and their families; staff and skills needed in teams; working with other healthcare services, and support for patients and their families when their disease is not responsive to treatment.
Drop-in events, which will include a brief presentation and an opportunity to learn more about the new standards and what they mean for the future of congenital heart surgery in Leeds, will be taking place at the following locations:
Sheffield – today, 11am-1pm at Quakers Hall, 10 St James’s Street, S1 2EW
Leeds – tomorrow, 11am-1pm at Kaberry Lecture Theatre, B Floor, Old Site, Leeds General Infirmary, LS1 3EX
Bradford – Saturday 29 November, Midland Hotel, Forster Square, Cheapside, BD1 4HU
The UK-wide public consultation will close at 5pm on Monday 8 December. Following public feedback, it is expected that new standards will be finalised during 2015/16 for delivery in 2016/17.