Consultation re closure of Congenital Heart Disease Service at Royal Brompton

Last week a 15 week public consultation was launched concerning NHS England’s planned decommissioning of Royal Brompton & Harefield NHS Foundation Trust’s (RBHT) Congenital Heart Disease (CHD) service.

Why is NHS England planning to close these CHD services?

The decision by NHS England to decommission CHD services at RBHT is because they believe that hospitals offering CHD services must now have certain other children’s services on the same site – services such as general surgery and gastroenterology (treatment of digestive problems). RBHT currently offers these services in partnership with Chelsea and Westminster Hospital.

Teams at RBHT carried out more congenital heart disease (CHD) procedures last year than any other centre in the country.  For the past ten years, the RBHT has undertaken over 500 congenital surgical operations annually (paediatric and adult) and during this time their results have met or exceeded all the standards defined by the regulators. Since 2009, they have consistently been one of the five best-performing centres in terms of low mortality rates.

This proposed closure of the RBHT CHD Service echoes a similar campaign launched in 2011 in response to a national review of cardiac services. However, the plans to close RBHT children’s cardiac service were deemed flawed and suspended by Secretary of State for Health, Jeremy Hunt. The success of the campaign to save the CHD service at the RBHT in 2011 relied on support by charities, patients and families, MP’s and alike. We hope to offer similar support again and invite you, friends, and family to support the campaign.

Our perspective

As a charity focused solely on supporting those with Primary Ciliary Dyskinesia (PCD) we are concerned by the intended closure of RBH cardiac services due to the impact that this will have on, not only PCD patients, but also respiratory and cardiac patients. If the plans go ahead, the consequences could be far-reaching and would affect both congenital heart disease services for adults and children and paediatric intensive care: if paediatric cardiac services were moved from RBHT, the paediatric intensive care unit would no longer be viable due to an inevitable drop in volume of patients requiring such expertise. In turn, this would adversely affect the specialist respiratory services, many of which cannot be delivered without the support of a specialist intensive care service (including the PCD Service). This is clearly bad news for PCD patients due to the high level integrated care that is provided by RBHT, commissioned with support from NHS England.

At the present moment, it is unclear what the impact of this will be in terms of service provision and funding, and this is our major concern. In fact, the review (page 45) states the following: “The national panel considered that there would be an impact on paediatric respiratory services, if paediatric cardiac services and PICU were no longer provided by the Royal Brompton. NHS England’s work focusses on congenital heart disease and has not examined paediatric respiratory services”. Without a clear path going forward, and given the consequences of closing the cardiac service, we cannot promote the proposed plans by NHS England. As a charity concerned with supporting patients with PCD it is in our interests to ensure that patient provisions are safeguarded and therefore we would like to ask your support in asking NHS England to provide a clear, succinct and detailed outline as to how they propose to mitigate any negative impact to the care of PCD patients, and respiratory/cardiac patients alike. We believe it is important that as a charity we take action in attempting to prevent the planned closure, this is because:

  • The RBHT is one of the few PCD specific centres in the UK and relies on the careful coordination of several teams within the Trust to provide a high quality service. Putting an end to CHD services will also put the specific PCD care provision at risk. This has been recognised by NHS England in the consultation document, however as the report is focused on cardiac services this is not explored further.
  • RBHT attracts a diverse and specialised range of expertise. Given that this is central to high standards of care, we are concerned about the impact this may have on the care of PCD patients, particularly so given the current availability of PCD expertise within the UK.
  • NHS England has not indicated how they will ensure PCD specific care for the approximately 150 PCD patients currently at RBHT; this is almost 1/3 of PCD patients nationwide. It is concerning that no information has been provided in regard to where these patients are likely to receive essential care. The report states that NHS England will provide support to NHS Trusts to understand and manage the impact on paediatric respiratory services, however no further detail is given. The report also fails to consider the impact on adult PCD patients at RBHT.
  • NHS England states that “there are alternative providers of specialist paediatric respiratory services in London”. However, given the careful coordination required to set up the PCD specific service at RBHT it is likely that another service provision will have time and cost implications. At the moment it is unclear how these are accounted for in the planned closure beyond simply stating that “NHS England will work with the hospital trust to understand and manage the impact on paediatric respiratory services. This could require a local service change process with further public engagement, potentially including full public consultation.”

The concerns outlined above are not exhaustive and are PCD specific. They also do not reflect the hard work that has gone into developing the PCD service that is available at RBHT; work which will have to be implemented elsewhere should the planned closure go ahead.

Without a detailed and appropriate level of contingency and impact planning we cannot, as a charity concerned with supporting those with PCD, provide support for NHS England’s proposed closure of RBH cardiac services. We hope that you will stand with us in supporting the campaign to prevent the closure of world class services at RBHT.

What can you do to help?

The 15 week public consultation runs until 5th June 2017. During this time we urge you to write to your local MP outlining your concerns (Template letter for RBHT Consultation Feb 2017 and guidelines); to join us on the 18th March for a march in support of the campaign against the planned closure (details to follow); to get the word out amongst friends and family; and to use social media to spread the word with a wider audience. #dontbreakabeatingheart

For more information regarding the campaign and the concerns from a cardiac/respiratory perspective please see the RBHT trust and charity websites). To read the consultation document in full please follow this link.

Please do not hesitate to contact us if you need any further information on 0300 111 0122 or via email to