UPDATED: Children's heart surgery to end at Yorkshire hospital (From York Press)
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UPDATED: Children's heart surgery to end at Yorkshire hospital
7:01pm Wednesday 4th July 2012 in News
By Mark Stead, Political Reporter
CHILDREN from York and North Yorkshire who need life-saving heart surgery will be forced to travel to Newcastle for treatment after health bosses controversially decided to end operations in Leeds.
The NHS confirmed tonight that the paediatric surgery centre at Leeds General Infirmary (LGI) will be a victim of a move to “streamline” provision across the UK - but campaigners have vowed to fight on.
The decision, made after a marathon meeting of the Joint Committee of Primary Care Trusts today, means children from the region face having to make a two-hour trip to Newcastle for treatment.
The plans had been criticised by parents whose children are or have been treated at Leeds, as well as heart doctors and MPs from all parties, and more than 600,000 people signed a petition calling for operations to remain at LGI.
The NHS has said it wants to concentrate specialist equipment and expertise at fewer centres as services are currently spread too thinly.
Heart surgery will be stopped at three of the ten hospitals where procedures are currently performed, with Leicester and London’s Royal Brompton Hospital also affected.
Twelve options were discussed by the committee today. The units where surgery will end will remain open for diagnosis, monitoring and non-surgical treatment, and are expected to keep providing specialist surgery throughout 2013 while detailed plans for the changes are drawn up.
Myriam Barker, 39, from York, whose five-year-old daughter Margaux had open heart surgery at LGI which saved her life after she was diagnosed with a condition called an atrial septal defect, called the news “very disappointing” but said: “We will continue to campaign - 600,000 people are behind us and we still have very, very strong points to make.”
She said the decision was a close one, hence the long meeting, and said: “We are going to carry on putting our points across and we hope we can change the NHS’ mind - this is not the end.”
Emma Mallett, 14, from York, survived a serious defect of the aorta as a six-year-old after being treated at LGI, and her father Simon said: “I hope this decision will now be referred to the Government to decide surgery should remain at Leeds, and it makes a different decision.
“If this process was starting again now, Leeds would be an obvious choice for a unit, so the campaign, with cross-party support, will undoubtedly continue.”
Committee chairman Sir Neil McKay said the streamlining of services was “a landmark decision” which would improve care for children with congenital heart disease.
He said: “The needs of children, not the vested interests of hospitals, have been at the heart of this review and we only took the decision after undergoing a robust, fair and transparent process.”
He said the decisions were difficult and some people would be disappointed, but said: “We strongly believe our decision is in the best interests of all children and will ensure services are safe and sustainable for the future.”
Sharon Cheng, director of the Children’s Heart Surgery Fund, claimed the LGI decision lacked “clinical logic” and had “ignored co-location and patient choice”. She said they would now be appealing to Health Secretary Andrew Lansley.
Comments(24)
Rosieposie
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7:53pm Wed 4 Jul 12
Rosieposie
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7:56pm Wed 4 Jul 12
The Analyst
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8:00pm Wed 4 Jul 12
Rosieposie wrote:Ok it's not politics - withdraw 50% of foreign aid and we keep Leeds open as well as being able to open up new centers. Our priorities are wholly wrong, trying to fix other peoples problems before addressing our own!
This is not politics it is child safety...I know what I would want for my child. Remember Bristol,
Rosieposie
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8:04pm Wed 4 Jul 12
Rosieposie
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8:07pm Wed 4 Jul 12
Rosieposie
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8:07pm Wed 4 Jul 12
Zetkin
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8:30pm Wed 4 Jul 12
Appalling decision, driven by money not health.
Digeorge
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8:50pm Wed 4 Jul 12
Exactly, that is what I feel and my son would probably be still alive today had he been given the chance to be operated in Newcastle originally. Children should not have to go to the USA to be operated on nor should I have to pick up in support groups on heart surgery that can not be done in certain heart centres. (I have done this on more than one occasion) and it is not an easy discussion.
This is about safety and quality and excellence. I am glad that the decision has finally been made for the safety of future generations of children and their families as for one of the families whose children died awaiting surgery, it has been a difficult 18 months.
For the record, I have recently moved some of my specialist care to Newcastle and more than happy as they have done some tests that others have not done for years.
After listening to the debate today and understand all the issues put, I would feel more than happy that the implementation of this is put into place.
Rosieposie
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8:53pm Wed 4 Jul 12
Digeorge
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9:08pm Wed 4 Jul 12
I agree with you entirely what you say and parents would go to the end of the earth for their child to get the right care at the right time in the right place for their needs to be met.
The implementation of the network of paediatric cardiologists locally, retrieval issues, stabilisation issues explained and who was going to be used, qualitative and quantitative data etc and finance issues explained.
Digeorge
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9:41pm Wed 4 Jul 12
So, for me and my husband and family, we are glad that the decision has finally been made.
This is about future generations that can have a better outcome and that includes being managed in multi-disciplinary clinics.
Matt_S
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10:27pm Wed 4 Jul 12
Mentos
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3:11am Thu 5 Jul 12
Colin the bearded dragon
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7:40am Thu 5 Jul 12
Zetkin wrote:It's a rubbish outcome for Leeds and Yorkshire but if the LGI was going to be the provider then all the poorly kids from the further north would be in the same situation. I feel for the poorer, car-less families. If the NHS can provide transport, great, otherwise an over priced, generally late and under performing rail service awaits. Oh, the Tories fluffed that as well!
And is child safety best served by forcing dangerously-ill children to travel all the way to Newcastle instead of the twenty odd miles to Leeds?
Appalling decision, driven by money not health.
Digeorge
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8:06am Thu 5 Jul 12
This is for future generation of children/adults do NOT suffer in the way we did.
As far as the car less and low income families are concerned, HC1 low income form (which I have used previously) is available for families for travel to and from hospital and many of these families will also have higher rate mobility (as we did) and be entitled to a car.
I have travelled to Newcastle recently and there is very little difference in a) the cost b) the journey time and will be doing in future.
ReginaldBiscuit
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9:06am Thu 5 Jul 12
Rosieposie wrote:Spot on Rosieposie. Expertise is the key. Newcastle isn't that far, certainly not by helicopter if you have a seriously ill child who is unable to travel by ambulance.
I worked at Great Ormond Street and honestly the distance made little difference it is the expertise that counts. Parents just wanted what is best 20 miles 200 it does ot matter whe you want the best for your child
It's sad that this has happened and certainly no coincidence that in 10 days, huge cuts to police and armed forces and now this has been announced. The warning shots have been fired by the ratings agencies when they downgraded several british banks the other week. Get your house in order or else and that means the government as well. They have to make cuts. If the government doesn't, we'll start to spiral like Spain, Italy, Ireland, Portugal and Greece. It will become too expensive to borrow money.
Let's be brutally clear here, forget the party politics, the united kingdom has horrendous debt. GDP over 500% and personal debt over a trillion. Yes, absolutely, it makes zero sense to spend money on foreign aid especially when that foreign aid goes to countries with nuclear weapons and space programs.
Sadly, the country has to cut, cut, cut. Failure to do so will lead to the sort of borrowing costs faced by Greece, Spain and Italy. Years and years of whatever flavour government not actually addressing issues - overspending, immigration, dumbing-down, false wealth creation (the housing boom) not to mention the horrendous cost of running parliaments in Northern Ireland, Scotland (The price of democracy, half a billion pounds worth of parliament building at Holyrood) and Wales has left the UK in a very precarious position indeed.
The UK isn't a major world power any more. What made the UK powerful was a commonwealth, trade links and the free ability to go and conquer the rest of the world. What's happening at the moment is very much the reverse.
We've all enjoyed the good life for too long and these cuts are just the tip of a very sad iceberg floating alone in an ocean of debt.
FCOL
Geoffers
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10:34am Thu 5 Jul 12
These places were not selected with the population's needs in mind. More like they were selected to satisfy some cost requirements.
And, I speak as a parent who has travelled the length and breadth of England seeking treatment for a rare immuno-deficency for two kids.
The travel costs are immense, the strain on the family is immense and the drain on resources is immense.
My wife and I often travelled four times a day to Cookridge at Leeds trying to balance the needs of all our kids!
I can't see how people will cope with these extra large distances now involved!
AngryandFrustrated
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11:12am Thu 5 Jul 12
However, Leeds was always going to be under threat - yes Newcastle may be the last major city in England on the A1 but my understanding is that it serves a lot of Scottish patients as well, so to say that there is nothing further north than sheep is a bit disingenuous.
I would sincerely hope that there will be some common sense used when sorting out the new arrangements. For example, I am aware that children with kidney disorders can now see a kidney specialist in York, without having to go to Leeds. I understand that the consultants come to York to hold the clinics several times a year. These clinics handle a lot of the work that even a few years ago would have been done exclusively at Leeds. Patients are managed and treated at York and in the event of an emergency or surgery, are then transferred to Leeds.
I would hope that this model is repeated with Newcastle holding clinics in the regions to deal with the management of the patient's condition, without the patients having to travel up North for every appointment.
And I would reiterate Rosieposie's comments. Whilst I am not comparing the LGI to Bristol, Bristol was meant to be a centre of excellence and we all now know how untrue that was. If I did have a very sick child, I would rather he or she be treated by someone doing this work day in, day out, and not someone doing the complex surgery once or twice a week.
Geoffers
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12:57pm Thu 5 Jul 12
AngryandFrustrated wrote:This review doesn't apply to Scotland. They already have facilities in Glasgow!
This is a hugely immotive subject and I will say now that I have not had the horror of having to deal with a dangerously ill child. My heart goes out to those posters on this thread that have had to deal with a dangerously sick child.
However, Leeds was always going to be under threat - yes Newcastle may be the last major city in England on the A1 but my understanding is that it serves a lot of Scottish patients as well, so to say that there is nothing further north than sheep is a bit disingenuous.
I would sincerely hope that there will be some common sense used when sorting out the new arrangements. For example, I am aware that children with kidney disorders can now see a kidney specialist in York, without having to go to Leeds. I understand that the consultants come to York to hold the clinics several times a year. These clinics handle a lot of the work that even a few years ago would have been done exclusively at Leeds. Patients are managed and treated at York and in the event of an emergency or surgery, are then transferred to Leeds.
I would hope that this model is repeated with Newcastle holding clinics in the regions to deal with the management of the patient's condition, without the patients having to travel up North for every appointment.
And I would reiterate Rosieposie's comments. Whilst I am not comparing the LGI to Bristol, Bristol was meant to be a centre of excellence and we all now know how untrue that was. If I did have a very sick child, I would rather he or she be treated by someone doing this work day in, day out, and not someone doing the complex surgery once or twice a week.
Theendoftheworld
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1:55pm Thu 5 Jul 12
2oldies
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2:19pm Thu 5 Jul 12
It does not take into account the effect on the families. My granddaughter was in LGI after emergency surgery at 2 days old. She and her parents stayed in the hospital for 5 weeks and a friend or family member went to be with them every day. That would not have been possible if she had been at Newcastle or Liverpool. They all needed our daily support and care. I hope the decision can be reversed.
Nickb123
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4:51pm Thu 5 Jul 12
Digeorge
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7:25am Fri 6 Jul 12
Amongst what is being provided is a network of paediatric cardiology network - a figure of 107 was quoted during the meeting of whom some are being trained. They would provide care locally.
I only ever saw the cardiac surgeon twice, the decisions in relation to cardiac surgery being taken in a multi-disciplinary team as timing.
However as part of these quality concerns being honest about what your competencies are and can not do is fundamental as there are children who should not be in certain hospitals. We should long have gone to Newcastle/GOS to be operated on.
The paediatric cardiologist also do clinics now in York and Scarborough and other places in the North of England. We never travelled to the centre to see the consultant as they came to us.
Secondly 2oldies says that her daughter stayed with a friend or relative. At Newcastle, there is provision for accommodation, that has already been put in place.
However, I remain concern that some of the medical profession still do not get the syndrome child whether it be 22q11.2 deletion syndrome/VCFS/DiGeor
ge syndrome or another similar syndrome as many of these conditions are genetic.
It is the subsequent failure of the genetics departments and cardiac surgery not to work together and ascertain the child's correct diagnosis as heart surgery only forms a very small part of it!
The decisions about change came from the cardiac surgeons themselves and the medical profession who have long wanted change as have parent groups.
However, it is the subsequent failure to implement a change plan that has led to increased numbers of child deaths during this past 10 years. Had some of the shortcomings from my own son's Inquest being implemented back in 2003, then things wouldn't have got to this stage.
Quality of care and excellence should be the key themes.
The Mc says...
7:30pm Wed 4 Jul 12