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'Hoping for a Christmas miracle': Children waiting months for life-saving procedures as all NHS beds full
19 December 2024, 06:00 | Updated: 19 December 2024, 06:57
Critically ill children are waiting up to eight weeks for life-saving procedures because there's no space in the NHS, LBC has learned.
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Those with severe heart failure need 'Berlin Hearts' or 'Ventricular assist devices' that act as the organ while they wait for transplants.
The beds to support that treatment are only available at two centres in the UK, Great Ormond Street in London and the Freeman Hospital in Newcastle.
But all of them are currently full, with a waiting list at least two months long.
Previous reports this month revealed a child was waiting for three weeks but Joe D'Souli, from Livingston, south west of Edinburgh, said the situation is even worse for his daughter.
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He says two-year-old daughter Fatima, who has been diagnosed with cardiomyopathy, has been waiting for eight weeks for the treatment she "desperately needs".
She remains in intensive care in Glasgow until a space becomes available.
He has nothing but praise and gratitude for the doctors, nurses and consultants helping her but is shocked by the overall "absolutely disgusting and shocking" lack of facilities.
Joe said: "We've been waiting for one of these beds at either Great Ormond Street or Freemans in Newcastle for the past eight weeks. She's on a list where if a bed becomes available she may be offered it but there is no guarantees and no defined time.
"She remains very, very critically ill. It's more than heartbreaking. What I am going through is absolute torment. I've got the sweetest and most beautiful little girl who all of a sudden has ended up on a ventilator with a very enlarged stomach, very enlarged liver and her heart is beating through her chest. I can see her heart beating through her chest.
"She's very frequently got a heart rate of around 200bpm because it just cannot cope with the demand from her body. She often crashes where her blood pressure will go down through the floor. She's nearly lost her life three of four times in that manner. One of those times I was saying goodbye to her before the consultant managed to save her.
"How many times are we going to be in this position? I am just hoping for a miracle now.
"I was told Freemans only have seven of these beds for children with Berlin Hearts and Great Ormond Street has only got five. That makes a total of twelve. I find that shocking for a population of 60 million people. I would only class that as absolutely disgusting because the heart failure rate among kids is significant.
"And she can't get one at all in Scotland. I know we have them for adults in Scotland but they don't do it for children here and that is a great shame. The options at the moment if you're living in Scotland is you are travelling to Newcastle or London which is quite sad.
"My message to the powers that be would be 'these cases are happening all the time, things are really bad in terms of this level of support and it's something that needs to be addressed very soon'. I'm sorry for every parent that has to go through this because it is a very difficult journey."
The chief executive of the Children's Heart Federation, Rajwant Kaur Singh, told LBC situations like Fatima's are "devastating".
She said she didn't believe a sudden drop in the donor pool or cuts to the NHS have caused them but has been warning for some time that the system for children is stretched and more 'Berlin Heart' beds are needed to avoid situations like this continuously happening.
"Unfortunately, we're hearing only increasingly about the children we support and their families falling victim to pressures and bottlenecks in what we know is an already stretched system, which shouldn't be the reason any patient doesn't receive the care that they need. It's really harrowing.
"Absolutely (we need more beds across the UK). It's a small specialty which we recognise provides the required expertise and precise knowledge and training, but despite that within our community the population is significant. Heart conditions are the most common defect present at birth in the UK so we are a significant community even though we're often forgotten. But circumstances and cases like this definitely prove time and time again there is that need.
"CHF have been campaigning directly for the NHS to carry out a full review of paediatric cardiothoracic transplant services to address particularly the inequity between the approaches of the adult and paediatric service. It is something that we've been actively pursuing for a while."
Newcastle Hospitals NHS Trust Joint Medical Director Michael Wright said: “We can’t begin to imagine how difficult and upsetting it must be for any family in this situation.
"We are one of only two centres in the country to provide this very specialist care for children with complex heart conditions and currently have a number of young patients in the Freeman Hospital who are supported on this device and waiting for a heart transplant.
"Our team are providing clinical guidance and advice to Fatima’s local hospital to ensure she receives the best possible interim care until she can be transferred to a specialist centre."
An NHS England spokesperson said: "This in an incredibly difficult situation for the families involved and an extremely complex area of care, where the expert capacity to support children who are eligible for heart transplants is inextricably linked to the availability of organs following the tragic loss of another child’s life.
"It remains a major and extremely challenging decision for families to make the life-saving choice to donate their child’s organs following an unimaginable loss.
"Any child waiting for a heart transplant is assessed individually and prioritised on the basis of clinical need and we are continuing to work nationally across the NHS to ensure children and families who are waiting for a heart transplant receive the best possible care at every stage."
Craig Wheelans, Associate Medical Director of National Services Division in Scotland, said: "Paediatric Cardiac Transplantation and Paediatric Mechanical Circulatory Support is of such a specialised nature that NHS England commission services on behalf of the population of the UK.
"The two centres that offer this service are in Great Ormond Street Hospital in London and the Freeman Hospital in Newcastle.
"While some forms of circulatory support and critical care are provided in Scotland for children, the specialised clinical expertise required to deliver mechanical circulatory support means that it can only be delivered at present in these two centres by highly skilled paediatric teams experienced in this technology."
A Department of Health and Social Care spokesperson said: “Our thoughts are with Fatima and her family during this unimaginably difficult time.
“We are working with the NHS to make sure young children like Fatima have access to lifesaving treatment and transplants.
“The £26 billion provided for the NHS at the Budget means we can drive improvements across the health service. As part of our 10 Year Health Plan, we’re investing in cutting-edge, specialist technologies to improve access to treatment and drive down waiting times.”
Joe has started a GoFundMe page to support his family now and with potential treatments abroad.
