Agenda item

Review of Children's Congenital Heart Services in England: Final Decision

To consider the report of the Head of Scrutiny and Member Development enabling the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) to consider the decision of the Joint Committee of Primary Care Trusts (and associated Decision-Making Business Case) in relation to the review of Children’s Congenital Heart Services in England and the reconfiguration of designated surgical centres.

 

 

Minutes:

The report of the Head of Scrutiny and Member Development introduced a range of information related to the decision by the Joint Committee of Primary Care Trusts (JCPCT) regarding the future reconfiguration of Children’s Congenital Cardiac Surgical Centres and associated network configuration.

 

The report reminded members of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) of the previous report prepared by the Joint Committee that highlighted a number of areas members believed needed further and more detailed consideration, including:

 

·  Co-location of services;

·  Caseloads;

·  Population density;

·  Vulnerable groups;

·  Travel and access to services;

·  Costs to the NHS

·  The impact on children, families and friends;

·  Established congenital cardiac networks;

·  Adults with congenital cardiac disease; 

·  Views of the people across Yorkshire and the Humber

 

The report highlighted the overall view previously expressed by the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) that any future service model that did not include a designated children’s cardiac surgical centre at Leeds would have a disproportionately negative impact on the children and families across Yorkshire and the Humber.

 

The report also highlighted that, at its meeting on 4 July 2012, the JCPCT had agreed consultation Option B for implementation and the designation of congenital heart networks led by the following surgical centres:

 

·  Newcastle upon Tyne Hospitals NHS Foundation Trust

·  Alder Hey Children’s Hospital NHS Foundation Trust

·  Birmingham Children’s Hospital NHS Foundation Trust

·  University Hospitals of Bristol NHS Foundation Trust

·  Southampton University Hospitals NHS Foundation Trust

·  Great Ormond Street Hospital for Children NHS Foundation Trust

·  Guy’s and St. Thomas’ NHS Foundation Trust

 

The associated Decision-Making Business Case was appended to the report for consideration by members of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber).

 

A range of interested parties / stakeholders were identified in the report as having been invited to attend the meeting and assist the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) in its consideration of the JCPCT’s decision.

The Chair advised the meeting that contributions would be received and considered in the following order:

 

  • Elected representatives;
  • Children’s Heart Surgery Fund and patient and parent representatives;
  • Leeds Teaching Hospitals NHS Trust representatives; and,
  • Joint Committee of Primary Care Trusts (JCPCT) representatives.

 

Elected representatives:

 

The following representatives were in attendance and addressed the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber).

 

·  Stuart Andrew – Member of Parliament for Pudsey

·  Councillor Lisa Mulherin – Executive Member for Health and Wellbeing   (Leeds City Council)

 

Stuart Andrew MP addressed the meeting, stating he was representing a large number of Members of Parliament from across different political parties.  I t was emphasised that MPs were not against the principles of the review but questioned the outcome and some of the assumptions made to support the JCPCT’s decision.  A number of specific issues, including the following matters, were highlighted:

·  Issues associated with the general population around Leeds (14 million people with 2 hours drive of the City) and transport links had not been sufficiently considered as part of the review.

·  Concerns around Newcastle’s ability to reach the minimum level of 400 surgical procedures per year, and the assumptions used to support this aspect of the review.

·  It was clear from the PwC work that patients across Yorkshire and the Humber would not travel to Newcastle and, in the absence of a surgical centre at Leeds, would access services at other centres, including Liverpool, Birmingham and London.

·  The JCPCT had assumed that a minimum of 25% of patients from Yorkshire and the Humber would travel to Newcastle.  This assumption suggested that Newcastle would just meet the requirement to undertake the minimum level of 400 surgical procedures per year.  However, it was unclear what evidence there was to suggest 25% was an accurate assumption and/or how this had been derived.

·  The co-location of services was an important factor to take into account, as this would have a direct impact on the level and quality of care accessible at surgical centres. There was concern that the decision to close the surgical centre at Leeds would not result in an improved service and would in fact deliver a worse service for the population of Yorkshire and the Humber.

·  Concerns that impacts on specific BME communities had not been adequately reflected in the JCPCTs decision.

 

On behalf of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber), the Chair thanked Mr Andrew for his contribution to the meeting. 

Councillor Lisa Mulherin, Leeds City Council’s Executive Member for Health and Wellbeing addressed the meeting.  It was clarified that until recently, Councillor Mulherin had previously been Chair of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) and therefore had a detailed knowledge and understanding the Committee’s work to date.

 

A number of specific issues, including the following matters, were highlighted:

 

·  Concerns that the JCPCT had failed to adequately engage with the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) sufficiently early in the review process, and that the work of the Joint Committee was not viewed as a valuable and constructive part of the process.

·  The length of time between the submission of the report from the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) and the response now presented, demonstrated the dismissive nature of the JCPCT’s approach to much of the Joint Committee’s work.

·  Issues around travel and access highlighted by the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) were not issues of convenience, but related to the real life impacts on children and families.

·  Some issues and comments related to ‘quality’ had been misleading and used disingenuously, however there was no doubt about the quality of services available at Leeds Teaching Hospitals NHS Trust (LTHT).

·  The ability of LTHT to meet the minimum standard of 400 procedures per annum under a 4 surgeon model.

·  Issues around transparency of decision-making and specifically information repeatedly requested by the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) that had not been provided by the JCPCT.

·  General concern that the decision to close the surgical centre at Leeds would not result in an improved service.  Rather, it would deliver a worse service for the population of Yorkshire and the Humber.

 

On behalf of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber), the Chair thanked Councillor Mulherin for her input into the meeting and continued contribution to the work of the Joint Committee.

 

Children’s Heart Surgery Fund and patient and parent representatives:

 

The following representatives were in attendance and addressed the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber).

 

·  Kevin Watterson[1] (Chair and Trustee) – Children’s Heart Surgery Fund

·  Lois Brown – parent

·  Jon Arnold – parent and Trustee of Children’s Heart Surgery Fund

·  Steph Ward – parent

·  Gaynor Bearder – parent

·  Kimberley Botham adult congenital heart patient

 

The parent / patient representatives thanked the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) fro the opportunity to highlight their concerns regarding the JCPCT’s decision and addressed the meeting. 

 

A summary of the issues highlighted and discussed at the meeting is as follows:

 

·  There was general support for the basis of the review – i.e. fewer, larger surgical centres.

·  The concerns around the JCPCT’s decision raised by parents and patients across Yorkshire and the Humber had not been raised as a result of unquestionable loyalty to the surgical centre at Leeds.  Concerns raised were as a result of wanting the best outcome for children and securing improvements to the services already available across Yorkshire and the Humber.

·  The JCPCT’s decision would lead to a lesser service for children and families across Yorkshire and the Humber – but with increased travel distances.

·  Concern that Newcastle would not reach the minimum number of 400 surgical procedures per annum – thus making the surgical centre unsustainable and potentially leaving the whole north eastern part of England without a surgical centre.

·  Concern that the PwC report on patient flows and clinical networks refers to the ‘management’ of patients and it was unclear how this reflected the right of patient choice (as detailed in the NHS Constitution).

·  Concerns over the openness and transparency of the decision-making processes and engagement with children and families across Yorkshire and the Humber.

·  The importance of co-location of services with the increasing complexity of needs and co-morbidities of children. It was highlighted that following the JCPCT’s decision, Newcastle remained the only ‘stand alone’ congenital heart surgical unit in England.

·  Concern regarding the long-term impacts on children with a congenital cardiac condition, particularly in terms of accessing specialist services where general anaesthesia would be needed.

·  Consideration of ‘the patient experience’ appeared to be lacking within the review process and there was a lack of evidence to confirm the JCPCT’s decision would deliver enhanced services for Yorkshire and the Humber.

·  It was unclear what would be gained by reviewing the services for adults with congenital heart disease separately from review services for children.  The outcome of the children’s review was likely to predetermine any review of services for adults with congenital heart disease.

·  The impact on capacity should there be an increased number of adults with congenital heart disease referred to Birmingham.

 

Mr. Watterson addressed the meeting in his capacity as Chair of the Children’s Heart Surgery Fund and outlined the following issues:

 

·  As Chair of the Children’s Heart Surgery Fund, Mr Watterson had spoken at and received feedback from 17 public events across the region during the period of public consultation (March 2011 – July 2011).  As such, Mr. Watterson was well aware of many of the issues and concerns raised by parents and families across the region.

·  As far as the North Eastern side of England was concerned, the JCPCT’s decision appeared to be illogical and did not reflect the basic health planning principles – i.e. services are placed as close as possible to the general population – thus limiting both the number of individuals needing to travel excessive distance and also limiting the overall impact on those accessing services.

·  The JCPCT’s decision did not appear to reflect the population projections for Yorkshire and the Humber and the North East.

·  Expertise does not reside in bricks and mortar (i.e. hospital buildings), but in the teams and individuals delivering services.  This is particularly important when considering the issues of co-location of services and work between different medical specialisms.

·  Clinical outcomes were regarded as a key measure of quality across the NHS generally.  However, the Kennedy scores (often referred to as the ‘quality’ scores) did not measure and therefore did not reflect issues associated with current clinical outcome.

·  The JCPCT’s decision did not appear to take sufficient account on the impact of emergency work undertaken on critically ill children and the associated impact.

·  Concern that the petition from Yorkshire and Humber against any closure of Leeds’ surgical unit, which included 600,000 signatures had not been given sufficient weighting or consideration as part of the JCPCT’s decision-making process.

 

Mr. Watterson also reflected on his personal experience (in his professional capacity as a Paediatric Cardiac Surgeon at Leeds Teaching Hospitals NHS Trust) of working in a ‘stand-alone’ surgical centre (at the former Killingbeck Hospital site in Leeds) with that of working in a dedicated Children’s Hospital setting – where all the necessary services (including obstetrics and maternity services) on a single site.  Mr. Watterson stressed the benefits for patients under a co-location of services model.

 

Members of the Joint Committee highlighted and discussed a number of issues at this point in the meeting, including:

·  Services available at the Freeman Hospital, Newcastle and the location of maternity services;

·  The role of referring clinicians in the service model agreed by the JCPCT;

·  The role of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber) to comment on the standards of care likely to be experienced as a result of the JCPCTs decision, and the evidence to support the decision.

 

Members also briefly discussed the content of the report of the Independent Expert Panel Chaired by Professor Sir Ian Kennedy regarding Children’s Congenital Cardiac Services at Royal Hospital for Sick Children (Yorkhill), Glasgow (February 2012).

 

On behalf of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber), the Chair thanked those in attendance for their contributions to the meeting and work of the Joint Committee.

 

Leeds Teaching Hospitals NHS Trust representatives:

 

The following representatives were in attendance and addressed the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber).

 

·  Stacey Hunter (Divisional General Manager, Children's Services) – Leeds Teaching Hospitals NHS Trust 

·  Karl Milner (Director of Communications) – Leeds Teaching Hospitals NHS Trust

·  Dr Kate English[2] (Consultant in Adult Congenital Heart Disease) – Leeds Teaching Hospitals NHS Trust

·  Dr John Thomson[3] (Consultant Cardiologist) – Leeds Teaching Hospitals NHS Trust

·  Dr Mark Darowski (PICU Consultant) – Leeds Teaching Hospitals NHS Trust

·  Dr Simon Newell (Consultant Neonatologist) – Leeds Teaching Hospitals NHS Trust 

 

The following issues were highlighted and discussed:

 

·  The fragmentation of the existing Yorkshire and Humber clinical network and how the proposed clinical networks would work in practice, with respective cardiology centres.

·  Queries around whether the proposed cardiology centre in Leeds would be required to work across three different networks (Newcastle, Birmingham and Liverpool).

·  Realities of the proposed patient flows and the respective roles of clinicians (in terms of referrals) and parents (in terms of patient choice).

·  The considerable local impact on Leeds Teaching Hospitals NHS Trust (LTHT) associated with the loss of surgical services, including clinical governance risks for cardiologists.

·  The use of the Kennedy scores as a ‘proxy’ for service quality and the apparent arbitrary and irrational nature of the scoring process.

·  Concerns around inconsistencies and apparent arithmetical errors in some of the published data.

·  One of the impacts of the JCPCT’s decision being that Newcastle would remain the only stand alone unit in England (i.e. not a Children’s Hospital providing the full range of services available elsewhere).

·  Concerns that some of the comments about the review that had been provided by the British Congenital Cardiac Association (BCCA) had not been fully reflected by the JCPCT.

·  Significant impacts (operationally and financially) of the JCPCT’s decision for the Paediatric Transport Service offered by Embrace.

·  The impact of the JCPCT decision on the operation of the Paediatric Intensive Care Unit PICU) in Leeds – including issues around capacity and flexibility during peak (winter) periods.  It was highlighted that this may lead to greater use/ access of PICU beds outside Yorkshire and the Humber.  This in turn may have a significant impact on the Paediatric Transport Service offered by Embrace.

·  The loss of surgical services was likely to have an impact on the cardiology services provided by LTHT and the training programme offered by the Trust.

·  The importance of the co-location of services – in particular for children and families from BME communities.

·  The impact of additional travelling on children and their families.

·  Improved survival rates of neonates leading to increased and greater complexities of needs in children.  The co-location of services in this respect being vitally important.

·  The well established network arrangements across Yorkshire and the Humber covering cardiac, PICU and neonatal services.

·  Issues associated with ‘blue’ babies and children with complex needs.  Without full co-location of services, it was unclear how children with complex needs would be treated/ cared for.

·  Concerns around the ‘quality’ scores and it was felt that these were not representative of the services offered by LTHT.

·  Concerns around the relative overall expertise of the Kennedy assessment panel.  No expertise from the perspective of adults with congenital heart disease and no practicing UK paediatric cardiologist.

·  Concern over the lack of complete information provided by the JCPCT in terms of the assessment process and associated scoring mechanism.

·  Consideration of training within the assessment scores.  Concern that without the provision and access to surgical services, it was unclear how cardiology trainees in Leeds (and potentially other de-designated centres) would complete their training.

·  The BCCA view that cardiac services for children and adults should have been considered jointly.

·  The increasing number of adult congenital heart disease patients.  Concern that the longer-term impact of increasing numbers in this area had not been fully considered.

·  Concerns around the sensitivity testing undertaken by the JCPCT (particular reference to Sensitivity F in the Decision-Making Business Case) in terms of:

o  The accuracy of information provided (no increase in the projected activity at the Birmingham Surgical Centre).

o  The assumed 25% level of patients from Sheffield, Doncaster, Leeds and Wakefield travelling to Newcastle did not appear to be in line with the outcome of the PwC work around patient flows.

·  Concern that some significant issues arising from the review remained unresolved and had been ‘parked’ for the implementation phase of the review.

 

Members discussed the details presented and statements made at the meeting.  Members overall assessment being that while the overall service was likely to result in additional costs and investments, the JCPCT’s decision would not result in an improved service across Yorkshire and Humber, rather the contrary being the case.

 

On behalf of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber), the Chair thanked those in attendance for their contributions to the meeting and work of the Joint Committee.

 

The Chair adjourned the meeting for lunch at approximately 1:30pm

 

The meeting was reconvened at approximately 2:00pm.  Members were advised that Councillors D Brown (Hull City Council) and B Hall (East Riding of Yorkshire Council) had left the meeting due to other engagements, and Councillor Shaukat Ali (Rotherham Council) had joined the meeting.

 

The Joint Committee of Primary Care Trusts (JCPCT) representatives:

 

The Chair welcomed everyone to the second part of the meeting and advised that the meeting would now focus on the work of the JCPCT and the decision made on 4 July 2012.

 

The following representatives were in attendance.

 

·  Sir Neil McKay – Chair of the Joint Committee of Primary Care Trusts (JCPCT)

·  Andy Buck (Chief Executive) – NHS South Yorkshire & Bassetlaw[4]

·  Dr. Leslie Hamilton (Deputy Chair) – Safe and Sustainable Cardiac Surgery Steering Group

·  Jeremy Glyde (Programme Director) – Safe and Sustainable Programme

 

Sir Neil McKay initially addressed the meeting and acknowledged the emotive issue under discussion, stating it would be difficult not to be moved by the statements provided to the Joint Committee earlier in the meeting. Sir Neil went on to make a series of comments, including:

 

·  There appeared to be a view that the comments and concerns from Yorkshire and the Humber had been ignored by the JCPCT.

·  The JCPCT had attempted to manage the process in good faith and had tried to do what’s right. Confirmation that the JCPCT had made the decision and that any advisers had only provided advice.

·  Some of the arguments already put forward could be made / equally applied elsewhere in England.

·  Confirmation that there was no evidence that current centres were unsafe (with the possible exception of Oxford that had been regarded as an outlier in terms of performance).

·  Confirmation that the case for change was generally accepted – which supported the need for fewer, larger surgical centres.

·  An outline that the JCPCT’s work and decision had not been scientifically precise – but a product of processes involving analysis of a large number of different sources of information and advice, coupled with professional judgement.

·  The outcome of the recent Court of Appeal process had found the public consultation process to be sound.

 

Further representatives addressed the meeting and the points highlighted and discussed included:

 

·  Development of the standards of care to be delivered by surgical centres and the supporting networks had been supported by a plethora of evidence.

·  The network model of care proposed envisaged a system of local services (excluding surgical procedures) delivered closer to patients’ homes.

·  Interpretation of the NHS definition of Critical Interdependencies and the implications for co-location of services.

·  Confirmation that Sir Ian Kennedy’s Expert panel had considered the best available evidence around Critical Interdependencies and re-affirmed previous advice, including that Foetal Medicine and Maternity Services were not critical interdependencies.

·  The review of services for adults with congenital cardiac disease was outside the scope/ terms of reference for the JCPCT and could not be considered.  The review of Children’s Services could not be delayed until 2014 to become part of the adults review process/ timetable.

·  The JCPCT had taken advice from a number of bodies regarding issues around with retrieval times.

·  Consideration of applications to deliver Nationally Commissioned Services (Transplantation, Extra Corporeal Membrane Oxygenation (ECMO) and Complex Tracheal Surgery) had been considered by a national committee – which had discounted Leeds’ application.  It was reported that the view of the Advisory Group for National Specialised Services (AGNSS) was that it would take 8/10 years to successfully move transplant services from those centres currently delivering such services (including Newcastle).

·  It was highlighted that three from the four options included as part of the public consultation process and that eight from twelve options considered by the JCPCT on 4 July 2012 would have resulted in moving one or more nationally commissioned services.

·  Confirmed that the Kennedy scores/ rankings had been important when assessing quality and undertaking the sensitivity tests.

·  NHS London had assessed the proposals against the four tests for reconfiguration of services identified by the Secretary of State for Health – that is, reconfiguration proposals need to demonstrate:

o  Support from GP commissioners

o  Strengthened public and patient engagement

o  Clarity on the clinical evidence base

o  Consistency with current and prospective patient choice

·  Issues around access and journey times had been taken into account by the JCPCT.

 

Members of the Joint Committee went on to highlight and discuss a number of issues, including:

 

·  The deconstruction of the existing strong Yorkshire and Humber clinical network and how the proposed clinical networks would work in practice – including the proposed relationships between surgical centres and cardiology centres.

·  Issues around the proposed cardiology centres working with more that one surgical centre. 

·  Travel and access issues to Newcastle.

·  Consultation with BME communities and the lack of engagement in this regard. It was highlighted that children from BME backgrounds represented 24% of the surgical cases in Yorkshire and the Humber – often presenting more complex needs.  The issues around co-location of services was particularly important in this regard.

·  The long-term sustainability of the Newcastle surgical centre.

·  Clarity around the Kennedy scores (used as a proxy for quality).

·  The significant challenges around implementation.

·  Clarity around the improvements to services for the children and families of Yorkshire and the Humber.

·  Queries around the 8/10 years timescale quoted to successfully move transplant services from those centres currently delivering such services.

·  The availability and provision of services in Leeds covering antenatal care through to adulthood. 

 

The Chair addressed the meeting and in summing up the Joint Committee’s deliberations, proposed that the 4 July 2012 decision of the Joint Committee of Primary Care Trusts, regarding the future reconfiguration of Children’s Congenital Cardiac Surgical Centres, and associated network configuration, be referred to the Secretary of State for Health for consideration, on the basis of the decision not being in the interest of the local NHS. 

 

For the purpose of the issues under consideration, the local NHS was interpreted as being the NHS across Yorkshire and the Humber.

 

RESOLVED –

 

(a)  That the 4th July 2012 decision of the Joint Committee of Primary Care Trusts, regarding the future reconfiguration of Children’s Congenital Cardiac Surgical Centres, and associated network configuration, be referred to the Secretary of State for Health for consideration, on the basis of the decision not being in the interest of the local NHS.

 

(b)  That, reflecting the evidence considered and the issues raised by members of the Joint Health Overview and Scrutiny Committee (Yorkshire and the Humber), a draft report be prepared to support the referral to the Secretary of State for Health. 

 



[1] Paediatric Cardiac Surgeon at Leeds Teaching Hospitals NHS Trust

[2]   Council Member of the British Congenital Cardiac Association (BCCA)

[3]   Honorary Secretary to the British Congenital Cardiac Association (BCCA)

[4]  Also Chair of the Specialised Commissioning Group (Yorkshire and the Humber) and the regional (Yorkshire and the Humber) representative on the Joint Committee of Primary Care Trusts (JCPCT).

 

Supporting documents: