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Life is a struggle every day for little Bethany
Yorkshire families are throwing their weight behind the Yep's Leeds Needs A Children's Hospital campaign. Vicki Robinson spoke to some of them
Bethany Salmon faces a daily battle just to survive – and the struggle is made even harder without a proper children's hospital.
The four-year-old suffers from a rare genetic liver disease and will need a transplant if she is to live past her 10th birthday.
Her parents, Sam Marston and Tony Salmon, would like nothing more than for that operation to take place in a new Leeds children's hospital.
Sam, 30, said: "When your child is ill you are already going through a horrendous time, without having to deal with things like broken air conditioning and run down wards. Bethany has been at hospital every few weeks since she was born and that's likely to continue until as and when she needs the transplant.
"Having a proper children's hospital, like they do in other cities, would make such a difference to a child's treatment and recovery.
Unbeknown to them, Sam and Tony, 47, were both carriers of a potentially fatal gene. The odds of them meeting and having a child with the disorder were almost a million to one. Bethany was just 15 days old when she was diagnosed with Progressive Familial Intrahepatic Cholestasis (PFIC) – a disease suffered by just 20 children in the UK and which causes total liver failure.
Inpatient
She spent most of her first year in hospitals in Leeds and Dewsbury and until recently was still a regular inpatient.
Although she is now back at home in Thornhill, Dewsbury, the youngster survives on a daily cocktail of 19 drugs which help her body function to some degree of normality.
As she gets older the condition will worsen further still and, ultimately, her only hope will be a liver transplant.
Sam said: "The staff at the liver unit at St James's are excellent – we cannot fault them.
"But the service itself could certainly do with improving.
"When we were first in with Bethany, the air conditioning was broken and they had to bring in a portable unit.
"One of the main problems with Bethany's illness is that she gets hot and itchy. She was so uncomfortable and upset. You just look around and think that she shouldn't have to cope with that, too."
A positive outlook after talks with the minister
CAMPAIGNERS who met with Health Minister Andy Burnham over the shelving of the children's hospital plans said they felt "positive" about the future.
Parents, doctors and MPs held talks with Mr Burnham in Westminster on Wednesday in a bid to get the plans back on track.
Afterwards the minister met with local health bosses – and ordered them to draw up a report detailing exactly why they had delayed the multi-million pound scheme.
He then promised managers help from experts within the Department of Health to try to redraw the hospital plans, hopefully making them more financially viable.
Both meetings were attended by Pudsey MP Paul Truswell, who has campaigned for years to get the hospital off the ground.
He told the YEP afterwards: "I think we got all we could have hoped for out of the meeting.
"Andy Burnham pledged to do all he could at his level to get the project back on track, and offered additional expert support and guidance from his department to scrutinise the figures being tossed around regarding the cost of the bid.
Funding
"He also revealed changes to NHS funding that were being considered that would assist specialist children's services generally."
The Minister pledged to visit Leeds soon to see first-hand the pressing need for new facilities for very ill children and their families.
Mr Truswell added: "Ultimately, the people on the ground here in Leeds must be the ones who make the plan work.
"The rigorous process we have now launched is actually one that Leeds Teaching Hospitals Trust should have gone through locally before throwing in the towel so unexpectedly and without any discussion with parents, health professionals or all the other people committed to this project.
"There is obviously concern that the project has grown well beyond the original children's hospital scheme that was presented in 2004, and now includes changes to a wide range of other services in the city.
"The Trust says it has also included a huge car park to meet the concerns of the City Council."
Parent Jonathan Abbott said he was glad the Trust's decision to mothball the scheme would now be in the full public glare.
He added: "The Trust now knows that its actions will be scrutinised at the top level.
"We have had a verbal commitment from the Department of Health that this hospital is needed. Even if the children's hospital proves not to be feasible, Mr Burnham said he still wanted to see significant improvements in children's services.
"He stressed there was no case for standing still."
Leeds City Council deputy leader Coun Mark Harris had also thrown his weight behind our campaign.
He said: "The massive response to the Liberal Democrat petition across the city shows the strength of feeling on this issue.
"I fully back the Yorkshire Evening Post's Leeds Needs a Children's Hospital campaign and urge everyone to support it."
Dad has every reason to back campaign
City councillor Javaid Akhtar has special cause to back the YEP's Leeds Needs A Children's Hospital Campaign.
His three-year-old son Ali Raza was born with throat problems and was treated at Leeds General Infirmary.
Although he is now fit and well, Coun Akhtar (Lib Dem, Gipton and Harehills) says he has seen exactly why a children's hospital is desperately needed.
He said: "I'm disgusted that the hospital plan has been shelved. There are hundreds of children out there now being treated at our hospitals and they deserve the best we can give them."
Coun Akhtar has sent out 2,000 forms in his ward urging people to support the campaign for a children's hospital. Hundreds have already been returned.
He added: "It just goes to show the strength of support there is for a facility like this."
Tell us your stories...
Tell us your stories...
Do you have a particular reason for supporting the campaign for a children's and maternity hospital?
l Was your child born in difficult circumstances?
l Have they endured a childhood illness?
l Are they regular users of the hospitals in Leeds?
l Do you have special words of praise for the staff who have cared for your son or daughter?
l Perhaps you are a nurse or doctor working in children's services?
Let us know by visiting our website www.yorkshireeveningpost.co.uk, or by emailing vicki.robinson@ypn.co.uk.
Please remember to include your daytime contact details.
Online petition
Three years ago when we ran our successful Give The Kids A Hospital campaign, around 3,000 of you filled in coupons calling on then Health Secretary John Reid to give the go-ahead for a dedicated unit.
The drive was a huge success and the city looked forward to a children's unit opening in 2012.
Now, a cash crisis has forced the brakes on the scheme.
But the YEP and its supporters believe a hospital is more important than ever.
We are today beginning a new online petition – making it even easier for you to add your support.
We will present your signatures to Health Secretary Patricia Hewitt, urging her to step in and secure the future of the children's and maternity hospital. Add your support at www.yorkshireeveningpost.co.uk.
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Weather for Leeds
Saturday 11 February 2012
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