Review of Children’s Congenital Cardiac Services in England

1. Safe and Sustainable Review of Children’s Congenital Cardiac Services in England

2. Principles of the Review • The NHS must provide only the very highest standards of care for children and their families, regardless of where they live or which hospital provides their care • Centres should provide care that is based around the needs of the child and the family, including transition to adult services • All relevant treatment other than surgery, including follow up, should be provided as locally as possible to the family • Clinical standards should be agreed and met by all centres Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

3. Standards • A set of national standards has been developed as part of this review • The standards were developed in partnership with healthcare professionals, parents and patient groups and are endorsed by professional associations and national patient groups • There are over 150 standards and they stand at the heart of the review aiming to achieve the best possible care and outcomes for children Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

4. Children’s Heart Surgery Centres in England 1. The Newcastle-Upon-Tyne Hospitals NHS Foundation Trust 2. Leeds Teaching Hospitals NHS Trust 3. Alder Hey Children's NHS Foundation Trust 4. University Hospitals of Leicester NHS Trust 5. Birmingham Children's Hospital NHS Foundation Trust 6. Great Ormond Street Hospital For Children NHS Trust 7 Royal Brompton & Harefield NHS Trust 8 Guy's And St Thomas' NHS Foundation Trust 9. Oxford Radcliffe Hospital NHS Trust 10. University Hospitals Bristol NHS Foundation Trust 11. Southampton University Hospitals NHS Trust Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

5. Devolved Administrations • The review does not include Scotland and Northern Ireland but representatives of these administrations were invited to the steering group • Wales is materially affected, but the Welsh NHS has decided to have observer status in the review. Safe and Sustainable will fully consult with the Welsh population Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

6. Why is there a need for the review? • Experts are concerned that smaller centres are not sustainable into the future and cannot provide the best possible care • Services have developed on an ad-hoc basis and as a result the current care pathway does not deliver the best possible care for children and their families • To ensure the national standards are met and the best service is delivered Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

7. How could the service be improved? • Of the 11 heart surgery centres in England somehave fewer than four paediatric surgeons. This means that in some centres there will be times when a surgeon is not available to deal with routine cases or with emergencies • We need enough surgeons in each centre to meet the day-to-day demands of each centre, these include: • Being on call for emergencies • Undertaking ward rounds • Running outpatient clinics • Training • Annual Leave Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

8. Risks of Current Staffing Levels • Smaller centres may not see the same volume and variety of caseload that colleagues in a larger centre will see • A significant risk of smaller centres with fewer staff is that there may be times when cardiac surgery teams are not available. This can result in: • Lack of 24/7 care • Small case loads • Occasional practice • Cancelled operations • Low availability of staff in emergencies Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

9. The need for review Surgeon Surgical numbers (2009) procedures (2007) Newcastle 2 244 Leeds 3 290 Liverpool 4 380 Birmingham 3 464 Leicester 3 201 Bristol 2 285 Oxford 1 130 GOSH 4 516 Brompton 4 414 Evelina 3 368 Southampton 2 227 The new standards require a minimum of 4 surgeons in each centre, each performing a minimum number of surgical procedures each year to maintain their expert skills. Experts agree that surgeons should each be performing 100 to 125 procedures per year. This suggests that each centre should be performing 400 to 500 procedures a year. Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

10. Who says we need change? • The 2001 Kennedy public enquiry into deaths at the Bristol Royal Infirmary recommended that quality standards be developed for children’s heart surgery centres and that there be fewer, larger centres of expertise • The Monro Review (2003) recommended fewer centres, but this recommendation was not implemented • The Summit of experts (2006) concluded that the current configuration of child heart surgery services was not sustainable and called for fewer centres • The Royal College of Surgeons (2007) report ‘Delivering a First Class Service’ also called for fewer, larger cardiac surgery centres • The National Clinical Advisory Team (2010) reviewed the Safe and Sustainable ‘case for change’ and endorsed the need for fewer cardiac surgery centres Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

11. Who says we need change? All of these organisations have expressed public support for the rationale for change: • Royal College of Surgeons • Society of Cardiothoracic Surgery in Great Britain and Ireland • Royal College of Paediatrics & Child Health • Royal College of Nursing • British Congenital Cardiac Association • Children’s Heart Federation • Specialised Healthcare Alliance • Paediatric Intensive Care Society Council Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

12. How will children benefit? • Surgeons, nurses and wider clinical teams should learn from each other. We also need to think about the next generation of clinicians so that the services are sustainable in the years to come • Working in teams exposes junior surgeons to the full range of surgical techniques necessary to deal with the complex and varied caseload of congenital heart disease • Surgeons, nurses and clinicians need to deal with a sufficient volume and range of complex operations if they are to offer a truly excellent and comprehensive service Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

13. How will children benefit? • Surgeons should be operating together on rare or complex cases • Smaller centres struggle to recruit and retain surgeons, as naturally they will want to work in centres that give them exposure to a large range of procedures • This will ensure that the services we deliver are fit for the future Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

14. What are the benefits for children and families? • Improved diagnostic services and follow up treatment delivered as close to home as possible • Better access to 24/7 care • Better access to surgical centres with expertise in complex procedures • Better clinical outcomes (mortality and morbidity) • Stronger communication between services and parents Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

15. What are the benefits for children and families? • Surgeons will mentor and learn from each other • An effective network that improves planning, delivery and communication • Strengthened Specialist Children’s Liaison Team • A national network of surgical centres collaborating in the interests of patients • NHS workforce that is highly trained and expert Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

16. What Will Change Look Like? • Fewer, larger centres of excellence providing surgery • A minimum of four consultant congenital cardiac surgeons at each centre • Enough doctors and nurses to provide 24/7 care for children and parents • A minimum of 400 paediatric heart surgeries per centre each year • Ideally 500 paediatric heart surgeries will take place each year at each centre • The tertiary surgical centres will provide clinical leadership throughout their networks • Better training for surgeons and their teams to ensure the sustainability of the service The location of children’s heart surgery centres cannot be ‘local’ to all people in England. However, services that don’t involve surgery or interventional procedures can be provided more locally. Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

17. What Will Change Look Like? Our vision is a network of linked hospitals working together, pooling expertise and experience to ensure the best results for children and young people. • The new model aims to deliver better and more consistent care for children and young people with heart disease. Continual review will ensure the service provides the best care and support for parents and their children • The new service will strengthen the delivery of assessment and follow up care in local hospitals so that children and families do not have to travel long distances • Current surgical centres that are not recommended for designation under Safe and Sustainable will become specialist paediatric cardiology centres, though not providing interventional services • A network of specialist centres collaborating in research and clinical development, encouraging the sharing of knowledge across the network Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

18. The new model aims to deliver better and more consistent care for children and young people with congenital heart disease. Continual review will ensure the service provides the best care and support for parents and their children Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

19. Will larger centres produce better outcomes? • Yes - research carried out by independent experts found evidence that suggests a link between larger centres and better clinical outcomes • The research evidence on which Safe and Sustainable relies is published at www.specialisedservices.nhs.uk Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

20. Governance A Joint Committee of Primary Care Trusts (JCPCT) is responsible for producing recommended options for a new national service and making a final decision following the public consultation ‘The governance structure has been robust and fit for purpose … great care has been taken to consider the most suitable governance vehicle and a joint committee of PCTs is being specially established … NHS Operations Board and Secretary of State for Health endorsement has been secured for this approach … NHS Specialised Services is commended for this ground-breaking work’ Office Government Commerce ‘Gateway’ report on Safe and Sustainable (September 2010) Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

21. Joint Committee PCT (JCPCT) Membership • Chaired by Sir Neil McKay, Chief Executive of East of England SHA • Chairs of 10 SCGs (Chief Executives of PCTs) • Teresa Moss, Director NHS Specialised Services • The National Assembly for Wales and Welsh Health Specialised Services Committee were invited to join the JCPCT and have elected to take observer status to ensure the continued consideration of the interests of the population of Wales Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

22. Role of the Steering Group • Develop and communicate the clinical ‘Case for Change’ • Consider the available research evidence around the relationship between larger surgical centres and clinical outcomes • Develop clinical standards that surgical centres must meet in the future • Develop a proposed model of care for regional paediatric cardiology networks • Oversee stakeholder engagement and communication • Endorse the process for the assessment of the current surgical centres • The steering group provides advice to the JCPCT about the clinical viability of potential options Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

23. Steering Group Membership • Children’s Heart Federation and lay representation • British Congenital Cardiac Association • Association of Cardiothoracic Anaesthetists • Society for Cardiothoracic Surgery in Great Britain and Ireland • Royal College of Paediatrics and Child Health • Paediatric Intensive Care Society • Royal College of Nursing • NHS Commissioners • NHS Strategic Health Authorities • NHS Public Health Doctors • NHS in Scotland and Wales Dr Patricia Hamilton is Chair of the Steering Group and is Immediate Past President of the Royal College of Paediatrics and Child Health. Dr Patricia Hamilton sits on the JCPCT in an advisory capacity. Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

24. Expert Review Panel The expert review panel that visited the 11 centres in May comprised: Chair Professor Sir Ian Kennedy Lay Maria Von Hildebrand Surgery Mr James Monro Cardiology Dr Mike Godman Anaesthesia Dr Neil Morton Paediatrics Dr David Mabin Nursing Sally Ramsay Commissioning Julia Stallibrass MBE All panel members are independent of current centres. Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

25. Joint Committee of PCTs Decision making body, includes representation from each area Steering Group clinical leadership, development of standards, overseeing engagement, clinical advice to JCPCT Independent expert review panel Led by Sir Ian Kennedy, assessed each surgical centre against standards Standards Working Group Developed Standards Safe and Sustainable National secretariat for the review – working on behalf of and in partnership with SCGs

26. How will we get to a shortlist of options? Phase 1 (April to June 2010) • In May 2010 an independent panel of experts, led by Professor Sir Ian Kennedy, visited each of the centres to assess their ability to meet the new standards. The outcome of these visits and other relevant evidence was reviewed by the JCPCT • A series of regional engagement events were held during May and June to understand the priorities of parents, patients and staff. Feedback from attendees was compiled and a summary report provided to the JCPCT. Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

27. How will we get to a shortlist of options? Phase 2 (July to December 2010) • The JCPCT will formulate options for reconfiguration considering: • The May assessments of centres • Clinical networks • Populations • Travel times for parents and children • Impact to other services (including paediatric intensive care, children’s heart transplantation and children’s ECMO) • Workforce implications • Affordability • The outcome of this work will be a small number of potential configuration options • These options will form the basis of a public consultation in January 2011 Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

28. How will we get to a shortlist of options? Phase 3 (December 2010) • Before the recommendations for configuration are agreed the Steering Group will advise the JCPCT on the clinical viability of the short-listed options so that the JCPCT is assured that the potential options are clinically safe • An independent group will review mortality cases from three centres currently performing surgery following analysis conducted earlier this year as part of South Central SHA’s review of the John Radcliffe Hospital Phase 4 (2011) • A public consultation will take place in early 2011 • At this stage, all centres apart from the John Radcliffe Hospital, Oxford form part of the options under consideration Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

29. John Radcliffe Hospital, Oxford • The JCPCT has not yet made any decisions about any options • The review team will recommend to the JCPCT that the Oxford service does not appear in any potential options • Initial work to date suggests that the Oxford service would have the greatest difficulty in meeting the proposed new standards in the future by a ‘significant margin’ • No decision about the Oxford service, or any other service, will be made by the JCPCT until the outcome of public consultation has been considered in 2011 Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

30. How we will consult • From early 2011 a formal consultation will be held with the populations of England and Wales • You will have the opportunity to comment on which centres should remain designated surgical centres and how regional care should be managed • HOSCs, parents, clinicians, young people and professional bodies will all be encouraged to take part • There will be a number of recommendations to consider, including a ‘preferred’ option if appropriate • We intend to ensure all key stakeholder groups are notified of the consultation process Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

31. How we will consult • We will use the following channels to reach the various audiences: • A series of face to face events around the country • Newsletters, written briefings and promotional materials • Online updates • We are also working with media to ensure information about the process appears locally and nationally • The Safe and Sustainable website will also carry materials on the consultation process, including an online version of the consultation document Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

32. Stakeholders • The public • Parents and children • Patient groups • Charities and the voluntary sector • NHS clinical staff • NHS Executive staff • Unions • NHS Commissioners • Strategic Health Authorities • Local authorities / Overview and Scrutiny Committees • Royal Colleges and professional associations • Devolved administrations (Scotland / Wales / Northern Ireland) • Department of Health • Local MPs • Media Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

33. How we have engaged with stakeholders ‘Stakeholder engagement to date has been robust and impressive, and there is widespread support for the new standards and the case for reconfiguration from clinicians and commissioners’ Office Government Commerce ‘Gateway’ report on Safe and Sustainable (September 2010) • National stakeholder event October 2009 (every OSC and LINk in England was invited) discussions from the day made available as videos on our website • Held 10 engagement events across England in spring of 2010 • Comments sought and received from stakeholders on the draft standards; the comments were placed on our website so that stakeholders can see how their comments have influenced the ‘final product’ • Quarterly newsletters • Presentations at parent and patient group meetings • Have worked with the Children’s Heart Federation to canvass the views of parents and patients • We have published the research evidence around volumes and outcomes on our website Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

34. Engagement and consultation with HOSCs • We have sought advice from the Centre for Public Scrutiny • We invited all HOSCs and LINks in England to the national stakeholder event in October 2009 • In August 2010 we issued a communique to all HOSCs in England in advance of formal public consultation • The 2003 Direction from the SoS requires HOSCs to convene a joint HOSC when two or more HOSCs consider proposals affecting a population larger than a single HOSC to be ‘substantial’ • We have asked HOSCs to let us know how they would like to be consulted in advance so that we all make the best use of the consultation period Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

35. What we need from HOSCs Although some HOSCs have let us know that they do not anticipate that future recommendations will constitute a substantial variation for their local populations, or that they have joint arrangements in place for consultation, some HOSCs have not yet let us know how they would wish to be consulted. Please let us know: • Your proposed arrangements for scrutiny (for example, whether or not you think that existing arrangements for regional joint scrutiny can be used and how much time you would need to put these arrangements into place - how often does the regional network meet?) • Contact details so that we can start to confirm dates and venues for presentations to HOSCs (we suggest that we set dates now so that we can start to work with you in developing a consultation that meets your needs) • Any other questions that you may have Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

36. Timeline • January 2011 – JCPCT meets to consider shortlist of potential options for configuration • February 2011 – JCPCT agrees final set of options for consultation • February 2011 – formal consultation commences • May 2011 – formal consultation ends • May-June 2011 – analysis of consultation by independent third party • July 2011 – JCPCT considers outcome of consultation and makes a decision • 2013 - implementation Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

37. Summary of achievements to date • Excellent clinician, patient and key stakeholder engagement • New standards and a robust assessment process created • Breaking new governance ground • An appropriately resourced programme • A supportive National Clinical Advisory Team review Office Government Commerce ‘Gateway’ report on Safe and Sustainable (September 2010) Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010

38. More information? www.specialisedservices.nhs.uk/safeandsustainable Slides on the Safe and Sustainable Review of Paediatric Congenital Cardiac Services in England, October 2010