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The new Congenital Heart Disease review: 2nd update – John Holden

Your feedback

Thank you to everyone who has provided feedback, in response to the CHD blog or elsewhere.   We cannot respond to every single comment we receive but we will take them all into account.  Some early themes to emerge are      

i) the need to listen to a cross section of opinion, not just a select few “experts”;

ii) doubts about the likelihood of major change ever being possible, because there is too much inertia and/or political nervousness;

iii) the importance of keeping a truly open mind – about what we will find from the evidence and what it means for the way services are organised.

On all of these points, I can offer reassurance, but of course you must judge us by our actions.   Our intention is clear:

i) we will be as inclusive as we possibly can in our discussions, and we won’t assume that the only experts are those people who lead their organisations.  We will try to find ways to give individuals, as well as organisations, a voice.  We will have more to say soon about how you can get involved;

ii) we will make a compelling case for change.  NHS England has today published “The NHS belongs to the people” – a call to action on the future of NHS services – which you can read at http://www.england.nhs.uk/2013/07/11/call-to-action/ .   This sets the context for all our work (including the new CHD review), and it reaffirms that “do nothing” is not an option;

iii) we will conduct the review with rigour, honesty and transparency.  We start from wanting to understand what a really good service looks like, and what are the standards which should be the measure of whether we have achieved that.  We will reiterate these points in all our discussions.              

Patients, families and their representatives

We have scheduled a meeting with national charities, to be held in central London on 16 July.   Those charities who have been invited are:

  • Tiny Tickers
  • The Somerville Foundation
  • Arc
  • Downs Heart Group
  • Heartline
  • Little Hearts Matter
  • Children’s Heart Federation
  • British Heart Foundation
  • Cystic Fibrosis Trust
  • South Asian Health Foundation
  • National Voices
  • Asthma UK
  • Max Appeal

Clinicians and their organisations

We have scheduled a teleconference with national clinical representatives on 16 July.  Those who have been invited to take part are:

  • Royal College of Paediatrics and Child Health
  • Adult Congenital Advisory Group
  • National Institute for Cardiovascular Outcome Research
  • Clinical Implementation Advisory Group
  • Association of Cardiac Anaesthetists
  • Paediatric Intensive Care Society
  • Society for Cardiothoracic Surgery of Great Britain and Ireland
  • British Congenital Cardiac Association
  • Royal College of Nursing
  • Clinical Reference Group for Congenital Services
  • Academy of Royal Colleges of Medicine
  • Royal College of Surgeons of England
  • British Maternal and Fetal Medicine Society

 We have also scheduled a meeting on 22 July with medical and nursing representatives from each of the 10 centres currently providing children’s congenital heart surgery, plus representatives from the three adult congenital centres that have formal links with a children’s congenital centre.   There are around 20 other NHS Trusts/Foundation Trusts in England that currently undertake some surgical or interventional procedures for adults with congenital heart disease, and in due course we will be broadening our engagement to include them.    Those invited to the 22 July meeting are:

  • Royal Brompton and Harefield Trust NHS Foundation Trust
  • Alder Hey Children’s NHS Foundation Trust
  • Great Ormond Street Hospital for Children NHS Foundation Trust
  • Guy’s and St Thomas’ NHS Foundation Trust
  • University Hospitals of Leicester NHS Trust
  • The Newcastle upon Tyne Hospital NHS Foundation Trust
  • Oxford University Hospitals
  • Birmingham Children’s Hospital NHS Foundation Trust
  • University Hospital Bristol NHS Foundation Trust
  • The Leeds Teaching Hospitals NHS Trust
  • University Hospital Southampton NHS Foundation Trust
  • University Hospitals Birmingham NHS Foundation Trust
  • University College London Hospitals NHS Foundation Trust
  • Central Manchester University Hospitals NHS Foundation Trust

 NHS England and other partners

The next meeting in public of NHS England’s Board will consider a paper which outlines our proposed work programme on the new CHD review.    The meeting is on 18 July, and will take place at NHS England Southside, 105 Victoria Street, London SW1E 6QT. Start time is 10.15am. If you would like to attend, please register your interest as places are limited. Please contact england.boardattendance@nhs.net by 4pm on 17 July 2013. 

All the Board papers are published on our website in advance and the meeting will be broadcast live as part of our commitment to make information as accessible as possible.  A recording will be placed on You Tube within a few days.

For more information please see http://www.england.nhs.uk/category/board-meetings/

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66 comments

  1. Shirley Barnes says:

    I am the mother of a child with CHD, who has had several surgeries, the last one being two weeks ago, so have followed the Safe and Sustainable process with great interest. I have been appalled at how partisan the process appeared to be from the very beginning and how it very rapidly became a war of attrition between ”interested” groups. The level of fear and distrust it generated was terrible to watch and it severely damaged the care every centre was able to offer children. This was unhealthy in every sense of the term
    Now it looks as though we are in for more of the same as certain opinions are again being sidelined and the same people are inviolved again in the process. I have read everything available about the process and have been to local ‘consultation’ events so feel that I am fairly well informed as to the issues. I would like to say that having seen and heard comments from CHF that they do not represent my views. On the contrary, I have found their appraoch to be patronising to parents at best, and bullying at worst. Some of the statements they have made in the press have been very damaging to certain units and to parents, the sub text being, if you don’t agree with us, you are not doing the best for your child. I am less than impressed that yet again, they seem to have been chosen to represent all CHD parents, when I can tell you, they most certainly don’t. How can our family have faith in this new process when it appears it is S & S mark two?

  2. Eve Hooley says:

    I hope that NHS England will take into consideration heart transplantation in there review. There are only two hospitals that’s carry out this life saving operation and have the expertise to do this and have the follow up care, liaison nurses and staff able to deal with the life complications that this can lead to. These two hospitals are GOSH and the Freeman hospital both carrying out over 15 transplants a year. This operations is carried out when all options to the child’s own heart have ran out this is not a operation taken lightly. Also it is not pre planned as no one knows when a heart will become available. The cost to The NHS and also to lives to move this highly complex surgery to another hospital would be a totally irresponsible act to do.
    My daughter went into heart failure from catching a virus and within 4 weeks of been told she had heart failure she was listed for a transplant and then a week after that placed on a life support machine and luckily for our family she received her gift of a new heart. This whole hospital experience and follow up care has been given at the Freeman hospital. I have only been in the heart world 18 months and find that we as parents should be standing together and looking at what is best for the future children and the children that need long term support. Not bickering and arguing about location and things that are so not relevant. Thank you

  3. Amanda white says:

    I am very lucky to live so close to the freeman we live about 10 mins away, but if I thought my son would get get better care at another unit I would travel now and move him even before the s&s i want the best for my son hes had 4 ops so far and will need more as he grows I do think Freeman is the best unit it’s renowned always had been. When we were in for my sons 3rd op there was a family in from Dublin who’s little girl was waiting for a transplant so it’s not just the north east the freeman serve its all over. Harry has other problems not just his heart and they will all get together from other hospitals so there not being all children’s care under one roof is not a bad thing they all communicate very well over Harry x

  4. Margaret k says:

    My major concern even with a whole new review is that the last one was so easily turned political!!! This should NEVER be a political decision! Nor should it come down to groups of people complaining about travel!! The reality is someone will have to travel sometime!! I know personally the ends of the universe isn’t far when it comes to my children!!! So it follows that 100 miles or so to be able to gain them the very best of treatment is a walk in the park!!!!
    The decision needs to be made by clinicians on clinical merit, it is important that the surgical centres are placed with in centres who already excell in complex surgery! In my opinion building further on these centres would allow them to progress further in the future at a quicker rate, rather than moving surgery from these centres and therefore in my mind taking a step back in the service we currently deliver!! Further on this point no decision is ever going to please everyone, people need to remember this is ment to be a clinical decision with the best interests of our children at the centre of it!!!!

    I am also very aware of some units ‘supporters’ use of ‘dirty tactics’ during the last review and their constant use of selective information to mis lead people in what the review was totally about! I.E repeatedly telling people the unit was under threat of closure, when this was not the case! Only surgery was to move, by using scaremongering tactics (like saying children would die during transfer etc.) many people ended up with very clouded views about what the review was ment to do!! And they were therefore unable to make informed choices!!!!

  5. Irene Wray says:

    You did not post my last post, but after watching the video footage yesterday of the meeting I was overjoyed to hear that your ideas were a reflection of mine. Listening to Professor Sir Bruce Keogh and Mr McCarthy speak had me in tears. So a very big thank you from me.

    • NHS England says:

      Apologies for not publishing your post Irene. I shall look into this asap.
      We’re glad you liked the video footage and that we are in agreement.
      Regards,
      Seth

  6. Michelle Elliott says:

    1. NO-ONE should expect a centre of excellence on their doorstep!

    2. Distance should NEVER be a priority over result of surgery!

    3. Would you REALLY put your child, under the knife of a surgeon who has only done say 3 of the type of surgery your child needs – rather than a centre of excellence where they have done 15/20 – just for the sake of being close to home?

    4. Please lets give NHSE the chance to engage with EVERYONE before they make their decision – then ACCEPT that decision and stop stalling the process for the sake of the few who inevitably will not agree?

  7. Irene Wray says:

    I totally agree with Amanda Carr and Carol Olley this should not be about location it should be about centres of excellence where all units work together as one and not against each other or in competition, referrals should not be seen as a failure of one unit but as the way forward to better outcomes for all children. In an ideal world all surgeons would have the same skills and the same expertise in all the different heart conditions and different surgical procedures and therefore we could concentrate purely on location. However, as this is not the case does it not make sense that your child go to where the expert in their condition is.

  8. Anne McGowan says:

    I have researched and critiqued, as far as is available in regards the safety of the LGI paediatric heart unit. I believe, as a Staff Nurse of over 20 years, and a mother to a cardiac son, that Sir Roger Boyles findings made me ask for a referral from the LGI to Freemans, Newcastle. 9 years on my precious son has had his first MRI, exercise test and shared communication with ProfnW McKenna at GOSH. Freemans are communicating and have provided my son with the correct investigations, I feel these investigations, after asking and asking, should have been undertaken years ago. At least 5,6 or more skilled surgeons are needed to safely run a sustainable theatre list. I feel, every investigation, at the LGI was a fight! I am intelligent, know my sons disease and am aware what investigations should have been offered ie 24 hr tape ( especially during growth spurts). I am very disappointed that mortality rates, at our last LGI consultations, we’re undertaken infringing of my delightful 11yr old ( which has taken a lot of explaining). I’ve had 9 years of not getting through to secretaries, not answering back, fighting and fighting, calls and calls and calls for investigations. All very stressful.. The Freemans have listened to us, worked with us and have provided an amazing service. Fewer centres of excellence with skilled surgeons whom children, parents, surgeons and staff feel well supported and proud is what is needed! Just because a few local mums want the LGI paediatric unit to stay open is not evidence. We are having to travel but travel we must for an excellent service.

    • NHS England says:

      We don’t normally respond to individual queries but having addressed this specific issue in the last blog (3rd update) we can only reiterate that the scope of the new review has not yet been finalised.

      It will be agreed in conjunction with stakeholders as part of the first phase of our work. As part of that process we want to understand the clinical and practical arguments for and against broadening the scope.

      We do think it is important to recognise the implications of the CHD review for other services which have a similar pathway. But the CHD review must have defined limits if it is to be effective

  9. Doreen Ward says:

    I am somewhat bemused by the comments above which say that those who are questioning the decision to invite views from CHF given how discredited the organisation was in the IRP are also being territorial and by implication wish units other than theirs to close. I haven’t read anyone saying that, only expressing grave concern about certain aspects of the review. It is to be hoped all units and all sets of parents feel listened to and the IRP report made it very clear that consulting parents and patients should be a priority. By just asking the views of CHF this was very unlikely to happen. Now local groups are being offered a voice on 7th August. Let’s move on and leave acrimony behind

  10. Claire Robinson says:

    Stop it all of you. A huge group of people continually back-biting and slagging off, really you should be ashamed.

    It’s part of the reason we are yet again spending £1000′s to investigate this when the money should be going towards better facilities that benefit the babies children and young people across the country including Scotland and Ireland and further afield where necessary. This is to important an issue for one group slagging off another. Everyone is welcome to their voice of course (I certainly have my share of rants – then I calm down and think about others in my position) but please keep the truly personal and sometimes nasty rants for your own parent group pages. Please come to this forum with your heads focused to make the review right this time.

    The review in what ever form is happening again so lets wipe the slate clean and all of us work together perhaps by doing so a solution might appear that works to the benefit of all hospitals/surgeons/parents and patients involved. We would all get information on statistics, results from surveys, news from the new review panel. Then no-one would feel like things were being hidden, concealed or lied about.

    NHS England please ensure you trawl through some of these understandably highly emotional responses to make sure you focus on ones that really do want to work towards a better service even if their local unit may face closure.
    Maybe each hospital should have a parent representative to attend meetings and pass information to their own group of parents as every hospital has it’s pluses and failings – but those representatives MUST take the good as well as the bad from their own groups. These representative parents should also have their own meetings to breakdown barriers at the end of the day we all have a huge thing in common (our babies) and it might do a few people good to know what services other hospitals provide that make them perform better. Unfortunately charities do not reflect the views of a group of people and in many cases parents aren’t even aware of some of them that exist. But they should be involved as after all they are there to support those that find them.

    Lets get this sorted so no more babies/children and adults die because of a lack of beds/ lack of care/lack of performance. I do not include travel here as it is not an issue. I would travel the country and world to give my son a chance to live, but if I did that I’d want to know that the countries best surgeons, hospitals, nursing staff and parent groups were there to get us through it.

    From a Mummy with a Heart baby waiting for Open Heart Surgery who cant get in because of lack of beds and whose local hospital also faced closure.

  11. Sue says:

    I wish to remind everyone that the IRP found that the original decision made by the JCPCT and those involved in the original review did NOT provide SAFE and sustainable childrens heart surgery services. This means that the WHOLE OF ENGLAND AND WALES would NOT have had SAFE and sustainable childrens heart surgery services if the original decision had gone ahead. Those thinking that because your unit retained childrens heart surgery you would have retained a safe service are mistaken. The original decision left a long list of safety issues that affected everyone. This is why people wish to insure that those who had been telling the decision makers for over the past five years what was wrong with the original review are given a voice in the new process. We must ensure that we have a safe and sustainable childrens heart services at the end of the process.

    No one should be questioning parents wanting answers. What you should be doing is going back to those involved in the original decision and asking them to make public the list of the safety issues and questioning them on why these were left unactioned. Also, if anyone involved in the original review is to be involved in the new process we need to know what they propose to do about this list of safety issues.

  12. Amanda Davis says:

    Politicians have taken over and it became a turf war in my eyes, we need to remember lives are at risk in all of this my cardiac child is treated 20 miles away but even if was 120 miles or more I would travel wherever I needed to, to get her the care she needed and the best care at that. A decision needs to be made and the arguments between units need to stop slander and in appropriate behaviours is not needed here once again remember the lives of many people who need saving every day that should be the center of everything

  13. Debbie Wigham says:

    It’s about the children , I would travel to the moon and back for my heart daughter , been traveling to and fro for 26 year and would do it every day if I had too. We should all stick together in the ch world ….

  14. John Rigby says:

    So far only the IRP seemed to have taken a balanced view and have listened to the concerns of many parents and their families who were clearly concerned by the bias set up of the Safe & Sustainability panel who rode rough shot over any views that did not reflect the outcome they wanted.

    Any hopes of a fresh open approach by NHS England must now be doubted by the inclusion of the CHF and the arrogant Mrs Anne Keatley – Clarke who insists she represents the views of heart patients everywhere. Let me assure you she does not represent the majority views of the thirteen million people living in the Midlands. She has completely failed to engage us in any discussions whatsover and indeed has never responded to letters sent to the CHF that are opposed to her viewpoint. She certainly does not represent me or many families I know who live in the East Midlands who have children with congenital heart problems.

    I trust the officers of NHS England are sufficently savy to recognise this and to take into account the views of many families who are deeply concerned at the methods adopted by the discredited S & S panel and CHF and to question the outrageous claims of CHF that they represent all heart patient families throughout England.

  15. Amanda Carr says:

    I am a heart mum, I have been for 5 1/2 years. Like all heart mums I have seen some incredible highs and some incredible lows. However, for the first time I am saddened to be a heart mum, as we aren’t the bunch we were, those warrior mums standing by our kids, fighting for their lives and their rights. This has turned into a playground squabble of one group against another, one hospital against another, one charity against another. have we forgotten our children, forgotten we need the best outcomes, the safest operations, the best surgeons. No unit is to be shut, no children are being forced to travel for anything other than surgery, surgery that may happen once, twice, or even three times in a lifetime. The night my daughter was born, and without any pre warning, I entered the CHD world, my 6 hour old baby, I was told may not make it through the night, at that moment in time I would have travelled to the ends of the earth to save her life. I was fortunate that I didn’t have to, I was fortunate the centre she was admitted to offered the surgery she needed. I am fortunate it looks like her heart was cured. She has 2 other medical conditions, one she receives treatment in another hospital in the same city, and the 2 hospitals work perfectly together, liase with each other to save overlap. She also ahs a 3rd condition that affects her life and our family like far more than CHD, and far more than her kidneys, and there is no cure, she as it for life, and we all have to live with it. If there was an op, a cure or a solution on the moon, phone Mr Branson I would be on that space ship. Forget politics, forget tit for tat mud slinging and REMEMBER OUR KIDS. That is what this is about, the best, safest and sustainable outcomes for our children, our grandchildren and beyond. A lot of groups are making excuses, yes some children are harder to explain to about travelling etc, you have time to explain and a child with sensory issues, autism etc will need explanation and preparation for any hospital whether they have been before or not, come on man up, accept change, step out of our back gardens, there is a big world out there, and yes it may offer better solutions for your children. Oh and as I am surely going to be abused for this I am from Newcastle, and am proud of that fact. x

  16. Anonymous says:

    Carol Olley – very well said and entirely true. I would go anywhere for the best treatment for my children, travelling is not a problem!

  17. terri mcelrue says:

    well said carol! its beyond ridiculous the way people are going on. As much as distance would make it that bit harder in the heart world its not the be all and end all. the whole purpose of this is to keep the best place open who are equip to providing the best care for our children! and isnt that all that should matter? take a long hard look at yourselves, realise how ridiculous you are all being and STOP!

  18. We are parents of a beautiful little boy Sean age 4, who sadly died last March after his Fontan operation. He developed complications that Bristol Children’s were unable to manage, nor had the facilities to care for him in a way that he clearly needed. We were unaware of just how complex his surgery was and of the care he would require after. We had always been told he would live into his 30′s and would never stand out as a person with a heart condition, so we were totally unprepared for what happened.
    We are currently going through an inquest to establish why he died, and NHS England are currently reviewing circumstances around his and another child Luke’s death.
    What we have found out since his death has been scary and shocking to us.
    We have found there is no consistency with cardiac services, different centres offer different facilities such as high Dependancy and Ecmo. Different centres do different surgeries in larger numbers than others, such as the Fontan, Birmingham did 46 compared to Bristols 18 in 2012, we didn’t know this before, but would have chosen a centre that performed Fontan more frequently had we known.
    We have found different centres have different policies and protocols for things, such as Bristol’s policy is not to fenestrate the Fontan where as others like Birmingham or GOSH would. There are differences we have found from centre to centre with other issues such as anti coagulation management, doing or not doing pre surgery MRI’s. Why are there such big differences ?
    Then we found out our sons surgery was classified as a success as he survived past 30 days which was ridiculous, he never left his hospital bed, yet when asking Nicor/CCAD why his Fontan was not on the data, and all 18 Fontans were showing with no deaths, we were told it takes a year to analyse the post 30 deaths, this is too long, data needs to be available in more real time to give parents accurate information before taking their child for surgery and units the alert needed when things are going wrong. CCAD is mis leading and very difficult for any parent to understand and yet we are advised to check it out to see how well the centres are doing for individual procedures.
    Then we’ve watched how some charities and families from across the country show too much negativity towards others when something has gone wrong for their child.
    All we as parents of heart children want to know, what ever centre we chose for our child’s heart surgery is that they will be working at the same high standard, all offer the same facilities and equipment that our child could need, they all have same standards, protocols, guidelines that mean this is the best way, deviations from guidelines when needed will be discussed with others and most of all parents need the peace of mind and trust that the will be given all the information they need before surgery of all the facts and if another centre does more of a particular procedure then there are options to go to another centre. We would also like to see when sadly things have gone wrong individual centres being open and transparent about this, proper procedures in place to deal with this and lessons learnt from it, not the cover ups that currently go on.
    All Centres save lives, do fantastic work but for too long some centres have not been reaching high standards for what ever reason and that needs to change.
    It’s too late for our son and we feel very let down, we now want to make sure other children do not suffer and other parents do not have to witness what we did. The Bristol inquiry and Kennedy report should have made it safer by now, but we also found out the recommendations had never been implemented, safe and sustainable came along to do this, but how many years is this taking?
    So please can NHS England get this right for the heart children born fighting who deserve the very best wherever they have their treatment.

  19. Sue says:

    People must understand that for some heart conditions time it takes to receive specialist treatment is extremely important and this does and will affect the final outcome. It is all well and good if you are fortunate to have enough time and the means to travel further however not all children have this luxury. This it why it is important to have services located where they are most needed. Therefore it is important to spend money wisely and ensure that money is invested in the right ways and that the right facilities are built in the right places. If NHS England’s wastes money building and investing in the wrong services or places it will only create a new set of problems for future generations of heart children and we will end up right back were we started.

  20. Doreen Ward says:

    http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item13.pdf

    If you are interested in how the NHS hopes to carry out the review than please read the link above.

    For clarification – I and others were concerned that our voice was being represented solely by CHF and that concern is justified and supported by the IRP. The meeting planned for 7th August will give us a voice, but at the time this blog was published that meeting had not been arranged.

  21. Carol Olley (Davidson) says:

    I am throughly dismayed and troubled by the continual mud slinging and territorial attitude of many on this forum. The focus must and always should be on the health and welfare of the children and the safety and excellence of the surgical procedure, performed by the best person to complete the task. End of. I was in a position to have to take my child to the USA for treatment in the early days of transplantation. My reaction – When’s the next flight! Distance no object! My friend Susan was indeed being seen at Harefield with her son-from Newcastle and yes, travelling to London for clinic appointments. No fuss, just acceptance as it was the best place for the treatment needed. To save the life of my child and travel-absolutely no question of my decision. Please, please stop this fighting-it is soul destroying and turning mother against mother. For Gods sake-just stop! Nobody has the right to have a Centre of Excellence on their doorstep just because it saves them a journey. This is about children’s lives. We all understand the stresses and strains of having a heart child but logistically it is impossible to provide without some sort of travel, be it across town or up a motorway. I would have traveled to the moon and back for the best possible treatment for my child and I would defy anyone say’s they wouldn’t because of locality. So stop this ridiculous mud slinging as it wears people out and has no positive forward thinking messages.

  22. Fragile Hearts says:

    Steph – if you feel that strongly about the issues of tracheostomies and CHF, write to NHS England direct of your experiences, I am sure they will be delighted to hear form you.

    Parents with rare conditions have also been to contribute, as have children who have died or have complex problems that actually were not represented in the document at all – those with genetic and complex problems.

    We all should have a voice whatever the region and by the way Newcastle’s facilities are fabulous and world class, state-of-the art and it isn’t just heart. I wouldn’t have the slightest problem in my child attending any clinic in Newcastle at all regardless of the distance and I live in Yorkshire.

    But I can understand your concerns and your views not listened to.

  23. Interested Individual says:

    Michael, if by your definition being based in London prevents CHF from being a national charity, there are an awful lot of other charities that would no longer be classed as ‘national’ either!

    NHS England has committed to giving ALL stakeholders the opportunity to put forward their questions, viewpoint and concerns, so isn’t it about time EVERYONE stopped mud-slinging and focused on what this process is supposed to be centred around – the provision of an excellent CHD service for everyone in England no matter where they live! Obviously families from different areas have different experiences and different loyalties, but that doesn’t make any one of them right, why don’t we ALL try to engage in a civil exchange of positive suggestions about the future direction of the service in future?

  24. Interested Onlooker says:

    It’s interesting to view that the IRP Report seemed to be a wish list from pro LGI unit supporters. Did they meet anyone else and if so where are their comments ? Weren’t parties that had important issues to raise met but no mention of them in the report. Just an observation.

  25. Irene Wray says:

    I do chose my comments wisely, and it was some of these parents that did the bullying/ridiculing and on the very day I buried my niece them knowing full well that I had and yet this charity chose to ban me from the forum just as they have banned others like me and yes I have the evidence and maybe I will take you up on your advice.

  26. Michael Moore says:

    I agree with the majority of these comments. The fact that Children’s Heart Federation were disgraced by the IRP report, tells you everything you need to know about them, and they should not be included. I don’t see how they are a ‘national’ charity, when they’re based in London. Some of these charities are tiny, and I can’t possibly have a vast membership.
    Irene, you should choose your words more wisely, before accusing a charity of bullying tactics. These comments appear to be from parents, and not a charity. If you think I’m wrong, then perhaps you should take your complaint to the Charity Commission.

  27. Irene Wray says:

    It makes me laugh that the people on here who represent CHSF ask to be given a voice in order to represent those families within their group but despite knowing for 3 days a meeting has been arranged on the 7th of August for just this purpose they say nothing to their members. Open and Honest none Biased I don’t think so if you can’t be honest with those you are meant to be supporting then I very much doubt you can be honest else where.

  28. Caroline Underwood says:

    Irene, bias is part of the human condition, which is why a range of views are needed, not just CHFs’, that’s our point exactly, good to know you agree. I’m hope I am not bullying anyone or pushing for anywhere just saying with Leicester at one end and Leeds at the other both being earmarked leaves a huge swath of children (including my grandchild & his parents & siblings & both sets of grandparents who have to care for the other children for weeks while the parents are at the hospital) are in a vulnerable position in comparison to London & the South East, with several centers. Population density and travel time for families should be factors to be considered, especially as statistics & research do not support larger centers, show us the evidence. I would like to give the ones we have better resources such as computer modelling etc.

  29. Steph Ward says:

    People who defend their units are not bullies-end of!

    Could someone from the NHS explain why certain charities not directly connected to CHD were chosen? I am involved in a very active support group for Children who have tracheostomies/ventilators. A significant number of these children also have CHD. Why is there no representation for charities representing these children or other children with complex health needs in addition to CHD.

  30. Interested Individual says:

    To all those who are making comments about the inclusion of various organisations, I would just like to pose the question of how you think NHS England can exclude them (or anyone else) give that they have stated that they “will conduct the review with rigour, honesty and transparency”.

    You want your comments and feedback to be considered, but everyone else deserves that opportunity too, whether or not they share the same views and concerns as you do. It’s only by listening to users of all units, with both good and bad experiences and all the staff, that the review panel can hope to put in place a framework that draws on the good practices and addresses the negative issues and strives to provide an excellent service to children and adults with CHD throughout England.

  31. Emma collier says:

    I am dismayed that the CHF are one of the charities you have chosen. I would like to put down in writing that as a family with a child who has had heart surgery that they do not speak for me. I have been disgusted by some of the statement CHF have published.

  32. Susan Jackson says:

    I am so sad to see this turning into a slanging match against CHF…. I’m sure you all realise that the ones doing the slanging all appear to be from the same group…

    Lets all pull together here, we want the best services for our children,we want the best doctors available with the expertise in the most serious of congenital heart problems.. I forsee a future where no surgeon is too arogant to refer a child to another, where a parent accepts the fact that for certains procedures another hospital may do it better, we may have to to travel for a planned op, but we are glad to do it because its the best chance for our child…

    Stop the bickering and think about the children for once instead of areas and co location..

  33. Sharon Cheng says:

    I am afraid I will be out of the country for the other suggested meeting of local groups/charitable organisations, nevertheless we will have some representation on the day from CHSF. I look forward to meeting with NHS England at the end of August in a separate meeting. I do hope the meeting goes well and all view points are considered.

  34. H. Smith says:

    Irene Wray – yes there are a number of comments from Leeds CHSF (I am not based in the north or yorkshire and am not a member of CHSF). My child attends a unit which remains open in all options. The fact remains that: “The reality is that CHF and its role became a source of unhelpful divisiveness that undermined achieving the necessary engagement rather than delivering it. Other voices and organisations need to be more directly involved and engaged.” As stated by the IRP. That was the first chance that parents such as myself, were given the chance to speak and be heard. The statement by the IRP represents my voice. I do not shout loudly. By ignoring the report, I again feel as if my view is being unheard and the future needs of my child ignored.

  35. Angela Trinder-Brook says:

    Stacey, how many members does CHF have in the North East side of the country?
    I am amazed yet again how NHS England can ignore groups that have highlighted the need for IRP & Jeremy Hunt. CHF have been proven to be biased against groups that are not their members. The LGI Childrens Heart Surgery Fund has 4,500 members who all object to this decision. What is there Chief Executive qualified in?(expert) who manages to sit on many Health Committee’s i.e. NICOR. If this is once again not listened too transparency and equality is not a consideration!
    LGI is not biased just aware of injustice for a population of 5 million equal to Denmark pop that has 27 cardiothoracic surgeons in their country.

  36. Jane -fragile hearts says:

    For those commenting on this blog about the fact that CHSF hasnt been invited to work with NHS England. I beleive you actually received your invitiation at the same time we did.

    Perhaps you could ask someone from CHSF to clarify it for you all.

    We now all need to work together in order to create a worldclass service for all our children throughout the UK.

  37. Eve Hooley says:

    I would like to high lite what Tracy Pears said. All decision should be made on the merits of the hospitals, and how well they preform. Also the complexity of the surgery they carry out. Population and location are not important, your child receiving the best care, by the most qualified persons is the most.
    If you shout and shout it doesn’t mean that that hospital is the best. When your child is having surgery ask questions. How long has the surgeon been in this hospital, have they carried out this procedure before. Listen to how you feel not about what you are told
    Politics should never have been aloud to get involved in matter to do with the NHS. This is costing children their ………

  38. Irene Wray says:

    The majority of comments on this forum about who should attend are from CHSF, who accuse others of being biased. I would like to ask are you not biased too, you do not accept anything anyone has to say that is not pro LGI I know as I have personally been on the receiving end of your bullying tactic’s.

  39. Tracy Pears says:

    This decision should be made on the merits of the hospitals, not the population, just because someone can shout louder does not mean they have a better service at the hospital.
    The greatest input should be from the doctors and surgeons that see the problem day in and day out. A parent visiting any hospital and probably getting great care can not see why this is not sustainable. A surgeon operating round the clock because for one reason or another other surgeons are not available, experienced enough, can see this. There will be a repeat of the Bristol tragedy in the future if specialist services for complex procedures are not all linked in one area.
    This should never be a political matter, which I think it has become and it will be dragged out till the next election for poiticians to favour voters.

  40. Michelle Elliott says:

    Thank you for the invite to meet with all of the support groups on 7th August – I am really looking forward to meeting with other parents, including CHSF, to discuss how Childrens Heart Services can move forward and deliver, what we must deliver, truly excellent CARE for all children and their families.
    Having discussed the invitation with all our families (I trust all members of CHSF are also aware?) we need to all work together to find a way forward. So, look forward to meeting you on the 7th.

  41. Louise Payne says:

    I am a parent of a child with congenital heart disease and 22q11.2 Deletion Syndrome. None of the charities listed represent my family’s interests. The charities that do represent me are Children’s Heart Surgery Fund and 22Crew. I have been dismayed by the behaviour of both CHF and Max Appeal throughout the original review process, and cannot understand why either are listed here, particularly as both charities voice the opinion of 1 individual, who had repeatedly stated her wish for units to be closed. This is hardly open or honest. Please appoint a charity or organisation to work with you on the new review that actually wants to represent families. I would like to understand how you have chosen the charities listed, and how other charities, organisations or individuals can get involved to make this a representative review. Thank you.

  42. Joanne says:

    I am dismayed that the CHF has been chosen to represent parents views! The IRP’s report openly criticised their contribution to the Safe and Sustainable review. The CHF do not represent my views and never will. This review needs to be open and transparent and this can not be the case while the CHF are representatives. The CHF themselves admitted in an email to me that their membership is mainly from the South, white, middle class women – hardly representative of the CHD community. Plus many of the other groups only repeat what the CHF says. As a parent of a child with Downs Syndrome and CHD I can not remember ever being asked for my opinion by the Downs Heart Group. Please do not make the same mistakes again.

  43. Tracey Ismay says:

    I am very disappointed that NHS England seem to have taken a very flippant view of the IRP and Jeremy Hunt’s comments and I must point out that in no way whatsoever do the CHF or Anne KC represent my views or the views of my CHD child – this is an absolute mockery

  44. Doreen Ward says:

    It is to be very much hoped that local charities attached to heart units, some of whom have a far greater membership than a number of those who have been invited to the meeting on 16th July will also get an opportunity to represent the views of their members.

  45. Stacey Elliott says:

    I think that you have invited all the charities that matter in these important decisions. I also think that those smaller ‘charities/support groups’ that are ‘tagged’ to their individual hospital should just pipe down and let this process take its course. Smaller support groups should not have a voice in this debate – we need INDEPENDANT experts that have the future of childrens heart services at the core of their thinking – not BULLIES who only have their own centres at heart!

    • Doreen Ward says:

      I think you might find that a number of the support groups listed who have been invited are in fact very small and can not possibly claim to represent the interests of families the length and breadth of England. I would also draw your attention to the quote from the IRP report highlighted above in the post from R. Penny. This is why many parents have no confidence that the views put forward by some of the charities will be in anyway fair and unbiased. And please don’t start accusing people of being bullies when they have been striving for fairness in this review. It had been recognised that the previous review was anything but.

    • R.Penny says:

      The CHF is an umbrella organisation which “represents” a large number of small local charities. As a member of a small local charity I would like to know what mandate the CHF has to make statements about any unit. I agree that the independence of the experts is essential in ensuring that a rational, considered decision is made about any changes that are introduced. The issue with the CHF is that they have been shown not to be independent and therefore I do not understand how they could be included. I am based in the south of the UK , nowhere near Leeds. The statements I have made are based in the concern that I have that the interests of children are not really at the heart of this, but the self interest of individuals. For any change to be accepted, those driving it cannot be perceived by people from across the country, to be biased. The IRP was independent. They criticised the CHF. They made it clear that parents not CHF should be given the opportunity to be heard. What was the point of the IRP review, if the findings and recommendations are to be ignored before the process even starts?

    • Sue says:

      I would disagree with your comment as certain regions and certain heart conditions nationally were unrepresented in the original review and it is important that these patient groups are represented. The review was originally intended to cover seven specialist areas and it is important that all specialized service areas retain a safe service. You cannot sacrifice one service area for improvements to another. The IRP stated that the original review left to many risks to be dealt with later.

    • Ann-Marie Sheard says:

      I think you have highlighted something that really needs to be stressed you say independent I say unbiased this is the route of the problem the CHF have already clearly laid out their position, have taken no heed of the IRP findings and will not alter their view on what should happen regardless of how many parents and families tell them they are not fairly representing them. Please listen NHS England as my family and I’m sure others are starting to become disheartened that this whole supposedly transparent process is yet again going to be going through the motions to try to appease the public whilst decisions remain unaltered

  46. When I read the above my heart sank. Trust in Government processes are hard won and easily lost. If there is an honest intention to be open minded and even handed this time I think it would help to ask anyone who has been found to be part of why the first review failed to step aside. Their views would now be “Fruit of the poisonous tree” and therefore counter productive. I especially have a problem with Ms Kealtey Clarke.

    This is why. I am a Leeds CHD childs Grandmother. My Grandchild is already 1 1/2 hours south of Leeds on the M1 motorway. To have expected him to go to Newcastle 3 hours north on the A1 is ridiculous. I hope the distribution of Paediatric heart surgery centers will be sensibly distributed for the patients rather than the Government/hospitals, I ask who serves who? Ms kealtey Clarkes’ stated views were that my wanting my Grandchild not to be so far from help was dangerous for all the other children by delaying the already proven unfair process. I don’t feel represented by her. It’s not my fault the Safe & Sustainable review she advised didn’t follow the Law, How can I trust a process which asks Ms Kealtey Clarke to be my representative yet again,

    Also, how can it be in the interests of any children to start this process, from where the arguments left off, rather than from the beginning. I want begin by asking if the premise fewer and bigger centers are better for outcomes? Bigger than the comparatively huge centers (Internationally speaking) we already have. Or if fewer bigger ceters are just cheaper to run for the government? I want the best for children, I don’t want children like my Grandson to die on the road, but see how that would help the governments finances. It’s all about balance isn’t it?

    • Doreen Ward says:

      Caroline – really good point re other countries. There is lots of information available now which has been unearthed by dedicated people which shows that this is in fact the only country which sets it benchmark at 400 patients and 4 surgeons. It looks like someone, somewhere had that idea many years ago now and is has become the ‘truth’. In fact nowhere does the IRP say that units should close to achieve ‘safe and sustainable’.

  47. Andy B says:

    Have NHS England not even READ the Independent Reconfiguration Panel’s report? It was highly critical of Keatley-Clarke and the CHF, well known for their bias against Leeds. They don’t and never have represented Leeds families and have no interest in doing so. How can they be invited to take part again, despite the content of the IRP report?

  48. Steph Ward says:

    After the criticisms of the Childrens Heart Federation in the IRP I am shocked to see they have been invited to represent the views of parents. They do NOT represent my views or the vast majority of parents/patients served by the Leeds Unit. I also have serious misgivings about the Downs Heart group who in their submission to the last review said it was acceptable that some children would die as a result of the review. These people do not have the authority to represent parents view effectively. Come to the units, talk directly to the parents, not some self appointed spokespeople who represent nobody and have caused hurt and upset among families living daily with the challenge of CHD and in our case numerous other complex issues

  49. Lloyd Naylor says:

    I would also like to put on record as a parent that I do not accept the Children’s Heart Federation as my representative.

  50. Ann-Marie Sheard says:

    Disgusted at how both the Children’s Heart Federation and Downs Heart Group are chosen yet again despite the fact neither one of them consider the views of the all the families they supposedly represent surely the fact that mention was made in the IRP along with evidence that has come to light over Anne Keatley Clarkes repeated bias and pre determined mindset over the whole review into children’s heart surgery should exclude them if only to give reassurance that this time decisions will be made fairly and openly and in the best interests of ALL children who face cardiac surgery.

  51. Deryck Thorp says:

    You’re seriously inviting the CHF who’s representative appeared to refuse the findings of the IRP? You aren’t exactly making this look like a it would be a new and fair review already as they as a group are already proving they are unable to do point iii) the importance of keeping a truly open mind – about what we will find from the evidence and what it means for the way services are organised.

  52. Don Purdy says:

    So, The IRP Criticised the CHF for their inappropriate behaviour, but the are asked back to the table to offer their biased views again, There is about a population of 5 million people who’s views they will not represent.

    Unbelievable that this is allowed to happen, so can we assume that nothing else is going change in this review then!
    Completely makes a mockery of the whole process,

  53. James Bentham says:

    Having moved recently to work in Paediatric Cardiology in America it is already evident that the care the four services I have worked in in the UK all offer our families excellent care. I was always perplexed by the constant misapprehension that some units in the UK were offering substandard care. Having worked at some of those units and now being able to compare it with the worlds leading cardiac surgical unit those determined to see change should be careful what they are changing. Improve yes – always, a sustainable future, absolutely, but don’t believe the media driven spin that your cardiologists, surgeons and nurses are not wholly and completely trying to offer the best care for you and your families and that it strongly competes with the best care in the world on so many levels – because it does.

  54. R Penny says:

    IRP: “A number of people raised with the Panel a concern regarding bias. They highlighted that the membership of the Steering Group, although ostensibly based on representatives from professional associations, included people with a connection to all of the surgical centres included in the review with the exception of the three that were subsequently selected for de-designation at the end of the process. Their concern was heightened by individuals closely involved with the Steering Group and process both privately and publicly expressing views about which centres should close in advance of the options assessment. This included a statement issued by the CHF in 2010 about future services being provided at the seven centres that were finally selected.”
    The charities who signed the letter were Tiny Tickers, LHM, the GUCH foundation and CHF.
    Seems the same mistakes are being repeated.

  55. H. Smith says:

    “The reality is that CHF and its role became a source of unhelpful divisiveness that undermined achieving the necessary engagement rather than delivering it. Other voices and organisations need to be more directly involved and engaged.” As stated by the IRP. Are you listening NHS England?

  56. Sam Richards says:

    Good to see that the CHF and Anne Keatley Clarke will be asked to represent the views of ‘all families’ again, despite the criticisms of her statements and attitude within the IRP report!! By including her, my family, for one, are already doubting the ability of NHS England to come up with any meaningful and acceptable change.

    • Doreen Ward says:

      Echo every word you say Sam. Plus grave concerns about some of the other groups which have been invited as a number of them have always just gone along with the views of CHF.

  57. Sue says:

    Will NHS England be inviting any of the inherited heart disease charities
    or arrhythmia charities to any meetings? Sudden cardiac death remains the biggest killer of young people in England.