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Congenital Heart Disease: NHS England takes action to deliver consistent and high quality services now and for the future

Patients with complex, sometimes life-threatening congenital heart disease will benefit from action to ensure core standards of quality and sustainability apply across all specialist services announced today (Friday 8th July) by NHS England.

Congenital heart disease (CHD) services have been the subject of a number of reviews since the public inquiry at Bristol Royal Infirmary in 2001, with the outcome of a further review of a number of children’s heart surgery cases at Bristol published last week.

In 2015, NHS England published new commissioning standards for CHD services following extensive consultation with patients and their families, clinicians and other experts.

Since then, hospital trusts providing CHD services have been asked to assess themselves against the standards, which came into effect from April 2016, and report back on their plans to meet them within the set time frames.

As a result of these assessments, and following further verification with providers, NHS England intends – subject to necessary engagement and service change process in relation to this assessment – to take the following actions to ensure all providers comply with the set standards.

With regard to providers of specialist surgical (Level 1) services:

  • Subject to consultation with relevant Trusts and, if appropriate, the wider public, NHS England will also work with Alder Hey Children’s Hospital NHS Foundation Trust and Liverpool Heart and Chest Hospital NHS Foundation Trust to safely transfer CHD surgery from Central Manchester University Hospitals NHS Foundation Trust. Specialist medical services may be retained at Central Manchester.
  • Subject to consultation with relevant Trusts and, if appropriate, the wider public, NHS England will also work with University Hospitals of Leicester NHS Trust and Royal Brompton & Harefield NHS Foundation Trust to safely transfer CHD surgical and interventional cardiology services to appropriate alternative hospitals. Neither University Hospitals Leicester or the Royal Brompton Trusts meet the standards and are extremely unlikely to be able to do so. Specialist medical services may be retained in Leicester.
  • NHS England will work with Newcastle Hospitals NHS Foundation Trust to ensure progress is made towards meeting the standards and the strategic importance of the link of CHD surgery to the paediatric heart transplant centre is sustainable and resilient.
  • NHS England will support and monitor progress at University Hospitals Bristol NHS Foundation Trust, Leeds Teaching Hospitals NHS Trust, University Hospitals Birmingham NHS Foundation Trust, Barts Health NHS Trust, Guy’s and St Thomas’ NHS Foundation Trust, and University Hospital Southampton NHS Foundation Trust to assist them in their plans to fully meet the standards. In the case of Bristol this will also include addressing specific recommendations set out in the independent report published last week.
  • Birmingham Children’s Hospital NHS Foundation Trust and Great Ormond Street Hospital for Children NHS Foundation Trust will continue to be commissioned, with ongoing monitoring, as they currently meet all or most of the standards.

NHS England remains concerned as to the level of occasional and isolated practice in specialist medical (Level 2) services, and intends to take the following actions:

  • NHS England will work with Blackpool Teaching Hospitals NHS Foundation Trust, University Hospital of South Manchester NHS Foundation Trust, Papworth Hospital NHS Foundation Trust, Nottingham University Hospitals NHS Trust and Imperial College Healthcare NHS Trust to cease occasional and isolated specialist medical practices.  Plans will be put in place to transfer services to other appropriate providers.
  • NHS England will support and monitor progress at Liverpool Heart and Chest hospital to develop Level 2 and Level 1 services in line with standards and Oxford to assist them in their plans to fully meet the standards.
  • Norfolk & Norwich University Hospitals NHS Foundation Trust and Brighton and Sussex University Hospitals NHS Trust will receive ongoing monitoring of their progress towards meeting the standards.

In addition, a small number of hospital trusts not recognised as a specialist centre, but which responded to the self-assessment that they undertook occasional practice/interventions, have been instructed to make arrangements for such patients to be cared for at a specialist centre in future. This process has now all-but eliminated occasional practice, with follow-up action to be taken against providers if they continue.

Dr Jonathan Fielden, NHS England Director of Specialised Commissioning and Deputy National Medical Director, said: “Patients, families and staff need to be assured of sustainable, high quality services now, and into the future.

“There has been a great deal of uncertainty over the future of congenital heart disease services over the past fifteen years. We owe it to patients, families and staff to end that uncertainty, and to provide clear direction for the safety and quality of this specialist area of medicine going forward.

“A great deal of work has gone into achieving consensus across the board on the standards that providers should meet. We are determined to take all actions necessary to ensure that those standards are met, so that patients get the high quality and safe services that they expect and deserve.

“This is further proof that NHS England as the national commissioner of specialised care is stepping up decisively on behalf of patients now and to sustain quality care for the future.”

Professor Sir Ian Kennedy, who was the chair of the public inquiry at Bristol Royal Infirmary, said: “These are vital services and we have waited 15 years to arrive at a solution which delivers quality and consistency for current and future generations. It is good news for patients that there is finally a clear consensus on the standards that need to be met, and that we are now seeing decisive action to make those standards a reality for every patient in every part of the country.”

Miss Clare Marx, President of the Royal College of Surgeons, said: “Improvements to care for children undergoing heart surgery continue to be needed in spite of improvements since the Bristol Royal Infirmary public inquiry report in 2001. The Royal College of Surgeons strongly supports today’s plans and we hope these changes will now finally happen for the ultimate good of patients.

“Units need to be the right size to enable surgical teams to be familiar and skilled in all conditions, treating these patients on a regular basis to maintain their experience and expertise. It’s absolutely critical that teams are sufficiently staffed to provide secure on-call rotas, disseminate new techniques, and train the next generation of specialists.

“The proposals set out today represent a consensus view of what consistent, high quality care should look like across the country. As a profession we are confident these standards will help reduce variation in care and improve outcomes. Any further delay or obstruction by local parties will prolong uncertainty for the very ill patients who need this surgery.”

Congenital heart disease (CHD) affects up to 9 in every 1,000 babies born in the UK, with differing types of CHD and levels of severity. Some of the more common CHDs include:

  • septal defects, commonly referred to as a “hole in the heart”;
  • coarctation (or narrowing) of the aorta,
  • pulmonary valve stenosis, where the valve controlling blood flow to the lungs is narrower than normal, and;
  • transposition of the great arteries, where the pulmonary and aortic valves and the arteries they’re connected to have swapped positions.

Services and surgery – the provision of which is clustered in a small number of specialist centres across England – have progressed significantly over the last few decades, and around 80% of those born with a CHD now survive into adulthood.

However, there has been uncertainty over their future configuration. In an effort to address this uncertainty, in July 2013, after discussions with key stakeholders, NHS England established the New Congenital Heart Disease Review.

The Review had the following aims:

  • Securing the best outcomes for all patients – not just lowest mortality but reduced disability and an improved opportunity for survivors to lead better lives;
  • Tackling variation – ensuring that services across the country consistently meet national standards, and are able to offer resilient 24/7 care, and;
  • Improving patient experience – including how information is provided to patients and their families, and consideration of access and support for families when they have to be away from home.

On 23 July 2015 the NHS England Board received the review’s report and around two hundred new standards and service specifications which providers of CHD services should meet. These standards began in April 2016, with a five-year trajectory to full compliance.

In order to establish which providers do or can meet the standards in the set time frame, all providers were asked to complete a self-assessment process, the results of which have now been processed and form the basis of the actions set out today.

In 2014/15, the last year for which reliable data exists, the number of operations performed by CHD services was 4,354, and the number of interventional procedures was 3,793.

While some patients will have to travel further to access specialist services as a result of these changes, emergency admissions are rare, and ongoing work aims to ensure that more of a patient’s long-term care can be delivered closer to home, meaning fewer trips to specialist centres.

Where the transfer of services goes ahead, NHS England will work with the hospital trusts to ensure that staff are supported.

 

 






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13 comments

  1. Lorraine feaviour says:

    You go on and on about meeting standards. The only standards we are interested in as families are the standards that keep our children alive. You should all be ashamed of yourselves number crunching and worrying parents and families who already have enough to worry about. My grandson is alive happy and thriving thanks to the care he received from the Royal Brompton and the team there.
    I for one think that deciding to close the chd service there is disgusting who do you think you are playing god like this I am incredibly angry and upset that I have paid into the nhs all my working life for this to happen when we needed its support more than ever perhaps we should all pay privately then perhaps the numbers will suit

  2. kevin riley says:

    THE NHS IS SHORT OF FUNDS FOR TWO REASONS – FIRSTLY BECAUSE THE GOVERNMENT WISHES IT TO BE SO – SECONDLY BECAUSE FAR TOO MUCH MONEY (CIRCA 60%) OF TAXPAYERS MONEY IS PAID ON EMPLOYING ON CHIEF EXECUTIVES (OVER 165 OF THEM) AND OTHER “MANAGEMENT” PERSONNEL THAN IS SPENT ON FRONT LINE SERVICE DELIVERY STAFF.

    YOUR REPRESENTATIVE STATED ON THE NEWSNIGHT THAT ONE RESULT OF BREXIT WAS THE REQUIREMENT TO MAKE FURTHER SO CALLED “SAVINGS” TO THE AMOUNT THE GOVERNMENT IS PREPARED TO ALLOCATE TO THE NHS.

    NO ONLY IS THE ABOVE WRONG IN FACT BUT IT IS ALSO LEGALLY INCORRECT AS IT IS OPEN TO THE GOVERNMENT TO ALLOCATE AS MUCH AS IT LIKES EACH YEAR TO THE NHS OUT OF THE OVERALL AMOUNT IT RECEIVES IN TAXES EACH YEAR.

    THE REALITY IS THAT THE UK IS RANKED ONE FROM THE BOTTOM IN THE AMOUNT IT SPENDS EACH YEAR ON THE NHS AS COMPARED TO THE OTHER 15 ORIGINAL MEMBERS OF THE EU.

    So far as the level of spending on the NHS in the UK is concerned (given the differences in the way countries fund their hea

  3. Worried parents says:

    Our adult son with Down’s Syndrome was referred by ENT at Blackpool VH to Manchester RI for a mastoidectomy because of his congenital heart condition. After his operation, involving an ACHD anaethetist, he was moved directly into Cardiac intensive care at MRI. Thanks to all concerned he made a good recovery. If adult congenital heart surgery is no longer available at Manchester RI, could a similar operation be done at Liverpool Heart & Chest? He now may need another operation for varicose veins. Wherever he has the operation he will need close support from an ACHD team and facilities. So where in the future can he have the operation?

  4. Stuart Whyte says:

    “Subject to consultation with relevant Trusts and, if appropriate, the wider public, NHS England will also work with University Hospitals of Leicester NHS Trust and Royal Brompton & Harefield NHS Foundation Trust to safely transfer CHD surgical and interventional cardiology services to appropriate alternative hospitals. Neither University Hospitals Leicester or the Royal Brompton Trusts meet the standards and are extremely unlikely to be able to do so.”

    Which specific standards? I’ve just spent two hours reading the paediatric standards (as my child was is a continuing CHD patient) which were only recently published.
    The least your team could do is spend a little time and space to re-iterate the standards which are not met and especially where they are stated as being “unlikely” to be met.
    How unlikely is currently moot without the proper clarification.
    Whereas NHS England will find the time, staff and money to “assist (six other national centres) in their plans to fully meet the standards” – two of these six have had continually failing care investigated previously and very recently.
    Also, under what criteria might “wider public consultation” be deemed appropriate?
    The last national cardiac consultation did not deem this appropriate at all for continuing cardiac services at the Brompton and this then led to a protracted and wholly avoidable legal dispute which, in turn, led to the collapse of the whole review process at great cost in time, money and confidence.
    Similarly the issues of which alternative centres was never pursued or given credible discussion in terms of case-load and current and future population reach.
    It seems to me that you are sacrificing the world class team at the Brompton to synthetically “equalise” the overall level of care – downwards – in the national context. A shoddy and barbaric course of action which will have huge long term repercussions, viz clinical research, staff training and the wider communication of best practice.
    Please provide detailed mitigation to the contrary, in order to maintain the full confidence of practitioners, patients and carers across the country.

  5. Gerald Hanson says:

    Transparency please! where are the data on which these decisions are based?

  6. kevin riley says:

    Yet another example of distorted priorities by highly paid but proven to be ineffective “experts” none of whom (including Simon Stevens) are actually responsible for service delivery..

    Unless and until sufficient Doctors and Nurses (particularly the latter) are employed at the front line of service delivery, none of the so called “improvements” will have any effect at all on patient out comes.

    The reality is that literally thousands of Hospital patients are continuing to die unnecessarily in the Hospitals run by the “independent” NHS Foundation Trusts because of the appalling=g failure of the very highly paid Chief Executives to employ enough front-line “service delivery” staff.

  7. kevin riley says:

    Yet again appalling deceit being practiced by highly paid individuals who have no actual control on how services are actually delivered.

    There is an already dangerous shortage of doctors and nurses (particularly the latter) and the danger to patient safety represented by this shortage is only going to get worse as a result of poor forward planning by NHS England (and it’s numerous and ever increasing and very expensive to the tax payer/NHS Budgetoff shoots) and the Department of Health.

    A far better and more immediate beneficial effect on patient outcomes would be achieved by getting rid of these individuals and spending the money saved on employing more doctors and nurses.

    The enormous amount of tax payers money being being spent on these non operational individuals and the multiplicity of very highly paid Chief Executives and Senior Managers employed in NHS Foundation Trusts as compared with the money being spent on the Doctors and Nurses who are actually responsible for service delivery amounts to a national scandal.

  8. Kelly says:

    I have congenital heart disease and once I turned 16 my care was passed over to MRI from the children’s hospital, I have been under MRI for 18 years, the thought of having to go somewhere new under doctors surgeons and nurses that don’t know me is terrifying. The surgeon at MRI is outstanding, as my condition is deteriorating again an surgery will be needed again, I gained comfort knowing Andreas would be the one to preform that surgery and now I am scared, anxious and worried sick about what will happen! I don’t understand this at all.

  9. David Pearce says:

    I have Marfans as had my father and three of my children. The strain of Marfan’s is not ”full blown”. I have had a stent and aortic valve fitted at the Royal Brompton. My children have been seen by Anne Childs at St Georges who, along with certain surgeons at the Brompton (Including in previous years, Magdi Yacoub) have been looking at the condition. I now require an operation for n aneurysm and have complete faith and trust in the team at the Brompton ( a hospital, along with Harefield) known to be a world renowned leader in heart surgery. I would therefore like to know why the Brompton and Harefield Trust do not meet standards?

  10. Bob Allwyn says:

    Were the ‘standards’ selected specifically to allow you to close those units? The inadequate and rushed decision-making period points towards closure for budgetary reasons rather than clinical ones.

  11. Fiona says:

    So care closer to home when my own local hospital failed my son who was born with congenital heart disease and died aged 8 16 years ago, I finally get an apology from them in the Dear Parent letter which was a disgrace in itself rather than Dear Mr and Mrs….. I am sorry to hear about the death of your child (no name) was a disgrace. Sorry but all of us had names.

    I now read of a number of cases one involving ‘transposition of the great arteries’ and the baby was born ‘blue’, when is the training going to start to happen as realistically a ‘blue baby’ is a child with heart problems and the non-sense of factitious illness? This is my local hospital!!! I had the same experience!!!

    And when is all the inquests into all these children’s deaths going to stop? There is nothing more stressful having been there myself for three days some two and a half years later of his death. Nothing is ever learnt from these ‘mistakes’ as should have been on the heart list in Leeds and wasn’t and should have been.

    When are the lessons of 22q11.2 deletion syndrome going to be learned that adults are not ‘carriers’, they are affected individuals. I was diagnosed in 1995 at the same time as my son and there is no way I should have ever been put forward for IVF PGD as have long-term neurological complications from that procedure and no evidence that it works and nearly killed me in the process.

    Now quite how long it has taken to get to my aberrant right subclavian artery despite three centres including allegedly a centre of excellence looking at my heart and consultants (my son had the same anomaly and was operated at birth) too long – they have only just found it aged 52 by a ST3 in Radiology not a consultant in any of these centres. Nor am I prepared to go to Newcastle anymore as wasn’t seen by a consultant but registrars.

    But having my care out of my local hospital would be my worst nightmare because of the failure to understand 22q11.2 deletion syndrome (and continue to cover-up) (of which you all haven’t learnt that 10-15%) of all children born with CHD have it and that is the leading cause of neonatal death in children and still have false allegations to this day albeit has taken 16 years to apologise because of an Ombudsman win on the complaints procedure.

    Still you haven’t ‘got’ it it is a life-long disorder and pregnancy was not the thing that I should have been doing – I will die of 22q11.2 deletion syndrome and its complications – a holistic approach and care programme approach is needed.

    It’s quite ridiculous how long this review has taken and now you have taken the decision to publish this today when effectively there is no government, no Prime Minister, a referendum to come out of the EU and no effective opposition either, it is a disgrace you have decided to bring this out yesterday.

    To remove Brompton Hospital with its services of excellence is strange beyond belief and actually was one of the centres I was considering going to!

  12. Mike Weavers says:

    So to be clear, “standards began in April 2016, with a five year trajectory to full compliance” yet in July 2016 you’ve drawn conclusions and decided to remove services? This is irrational and a sure way to judicial review, which I sincerely hope you lose.

    • David Pearce says:

      The Harefield and Royal Brompton are world renowned for heart treatment. I have nothing but praise for their professionalism and treatment, including the related research, along with St George’s, for Marfans. –a congenital disease– I am astonished at above and would like a lot more detail as to why the ruling was arrived at.