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Congenital heart disease NHS England review

What you need to know

NHS England – the organisation that directs how the NHS works across England – has announced plans to decommission (stop paying for) congenital heart disease (CHD) services from Royal Brompton Hospital.


The public consultation runs until 5 June 2017. 


If the plans do go ahead, it will force all CHD services at Royal Brompton, including our world-leading adult CHD research centre, to close.

 

 

It will also force the closure of a range of other services at the Trust, including the children’s intensive care unit and specialist children’s respiratory services such as those for cystic fibrosis, severe asthma and muscular dystrophy.


Read some facts and figures about our CHD service



When will this happen and how will my/my child’s treatment be affected?


Is CHD care at Royal Brompton to close because it is not as good as it should be?


If the service is good, why do NHS England want to close it?


If this new standard is about child services only, does that mean adult CHD care is unaffected by the plans?


Why was this proposal p ut forward?


Will NHS England's plan improve patient care in the long-run?


NHS England says this plan is supported by doctors and patients - is this true?


Weren’t CHD services at Royal Brompton threatened with closure before?



When will this happen and how will my/my child’s treatment be affected?

 

A final decision on whether to go ahead with the plans will not be made until after NHS England’s public consultation has ended on 5 June 2017. 


We will let all patients affected know as soon as a decision has been made, and provide details on if and when their care will be affected. If plans go ahead, it is unlikely that any changes to patient care will take place before 2018 at the earliest. 


To be kept up to date with the public consultation and other activity around the decision-making process, visit our ‘How you can help’ page


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Is CHD care at Royal Brompton to close because it is not as good as it should be?

 

No – official data show Royal Brompton consistently has one of the biggest, best and safest CHD services in the UK (with UK CHD services as a whole being among the best in the world). Over 98 per cent of patients would recommend our cardiology service to friends and family. 


Our adult CHD research output is also widely recognised as the best in the world, leading the way in finding new treatments for the future. 

  

Although they plan to close the service, NHS England has expressed no concerns at all about the quality of CHD care at the Trust. 


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If the service is good, why does NHS England want to close it?

  

NHS England recently stated that all hospitals offering CHD services must now also have certain other children’s services based on the same site – services such as general surgery and gastroenterology (treatment of digestive problems). Royal Brompton currently offers these services in partnership with Chelsea and Westminster Hospital. This is the only standard that NHS England claims we do not meet.


Specialist trusts such as ours and the Royal Marsden have such partnerships so that clinical opinion across a number of specialties in addition to their own, is readily available. Our contract with Chelsea and Westminster (C&W) has been in place for several years, and means that expert opinion can be gained within a short timeframe across a number of areas both during and outside normal working hours. 


The partnership with C&W works well; clinicians are jointly appointed between the two trusts and part of their contract is allocated to Royal Brompton work. They attend weekly joint clinical meetings, joint ward rounds, use shared systems, and some nurses take part in shared staff rotations. Regular audits ensure that timely and appropriate medical opinion is achieved day and night. 


The idea that all paediatric services need to be based on the same site has been opposed by a number of independent clinicians and has no basis in evidence. 

  

NHS England has not disputed the effectiveness of our arrangement with Chelsea & Westminster. It also accepts that there is no evidence that having all services on the same site improves patient care, and admits that many experts are opposed to this requirement. 


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If this new standard is about child services only, does that mean adult CHD care is unaffected by the plans?

 

No – although the standard Royal Brompton is deemed not to comply with only concerns child services, both child and adult services would close as a result of NHS England’s plan. 

Although NHS England claims it would like to keep adult congenital heart diseases services at Royal Brompton, the Trust has not received a proposal from NHS England to this effect.

Furthermore, for such an option to work, heart surgeons would need to work across different centres several miles apart. Without this, Royal Brompton would fail another of NHS England’s standards regarding the minimum number of procedures each surgeon needs to perform a year.


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Why was this proposal put forward?

 

Reforming congenital heart disease services dates back to a 2001 report that investigated an unexpectedly high death rate among babies after heart surgery at one particular hospital – Bristol Royal Infirmary. The report made a number of broad recommendations about what the NHS needed to do to ensure such high death rates did not happen again. 

  

Data from individual hospitals show a dramatic improvement in congenital heart disease standards in the early 2000s. There was a large increase in the number, and complexity, of the cases taken on, and death rates declined by nearly a third in the first half of the decade. By the end of the decade, studies showed that CHD care in the UK was among the best in the world. 

  

Despite this improvement, central NHS management were still keen to introduce reforms that were linked to the recommendations of the 2001 report. The first attempt – ‘Safe and Sustainable’ – was published by NHS England in 2011, but was widely criticised and was abandoned two years later. 

  

In 2015, a new set of around 470 new standards for CHD care was published to replace Safe and Sustainable. 

  

It is one of these standards that states that all hospitals providing CHD services now need to have other named children’s services on site too. This standard exists even though, as NHS England have stated themselves, many medical professionals disagree with it, and there is no evidence showing it improves patient care. 


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Will NHS England’s plan improve patient care in the long-run?


NHS England have not been able to explain how their plan would improve care for patients in practice. 

 

They have also admitted that there is no evidence supporting ‘co-location’ – the one standard they believe Royal Brompton does not meet. NHS England haven’t been able to explain how our service could be any more cohesive, and or what ‘co-located’ Trusts are doing that we aren’t. If co-location ensured better performance, Trusts with co-located services would have better patient outcomes than us. They don’t.

 

Our researchers have suggested that, by closing our world-leading research unit, NHS England’s plans could set adult CHD research back years. This would harm future care quality by delaying the development of new treatments for CHD. 


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NHS England says its plan is supported by doctors and patients - is this true? 


No. Some patients and doctors were asked about their views on the full set of new standards, but have not been asked specifically about the plans to end the service at Royal Brompton. 

 

Minutes from NHS England’s meetings with clinicians show that most don’t consider co-location essential, nor more important than the co-location of child and adult CHD services - yet these views were overruled when the standards were finalised.

 

We also believe that if NHS England consulted our patients, it would find that patients who have experience of our care are very happy with it as it is - our cardiology service would not have a satisfaction rating of over 98% if this wasn’t the case.

 

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Weren’t CHD services at Royal Brompton threatened with closure before?

 
Yes – the ‘Safe and Sustainable’ review recommended the closure of children’s CHD services at Royal Brompton and other hospitals. However, after a series of protests, legal challenges and an independent review, the Secretary of State of Health, Jeremy Hunt, concluded that the plans were flawed and suspended them. He called for a new review of CHD services to replace Safe and Sustainable. The outcome of this new review is the proposal outlined above.


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