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Safe and Sustainable A New Vision for Children’s Congenital Heart Services in England PCT Board Update September 2011 1.

INTRODUCTION

At the Yorkshire and the Humber SCG meetings on 24 June, 22 July and 23 September the Safe and Sustainable review was discussed in depth, including issues raised during the consultation, which closed on 1 July. This briefing paper sets out to update PCT Boards on: Key dates in the coming months Update on progress of the Joint Overview Scrutiny Committee (JOSC) Information that will be considered by the JCPCT This paper includes the following Appendices: APPENDIX 1. Briefing on Yorkshire and Humber CCAD figures for 2010/11 APPENDIX 2. Briefing on the findings of the Interim Health Impact Assessment APPENDIX 3. Briefing on the findings of the Report of the Public Consultation 2.

KEY DATES

2.1. JCPCT meetings It is currently planned that the decision on the future configuration will be made by the JCPCT at the meeting in public, currently planned for 15 December. This is subject to the outcome of a Judicial Review proceeding that has been instigated by the Board of the Royal Brompton & Harefield NHS Foundation Trust. The full hearing will commence on 26 September. The JCPCT will not make a final decision before the Judicial Review has concluded. The next JCPCT meeting to be held on 25 October will consider a number of items including: -

Price Waterhouse Coopers (PWC) network configuration/patient flows report; the consultation findings; any alternative options put forward; advice from the Steering Group

It is envisaged that at this point any re-scoring of the options will need to be conducted and concluded. 2.2. JCPCT representation Andy Buck, Chief Executive of NHS South Yorkshire and Bassetlaw, has assumed the role of Chair of SCG as from 23 September. As part of this role, and also as of 23 September, Andy will now be the JCPCT representative for Yorkshire & the Humber.

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2.3. JOSC Consultation Deadline Joint Health Overview and Scrutiny Committees (JOSCs) have a further opportunity to consider the analysis of the consultation and the interim health impact assessment and supplement their original consultation responses by 5 October 2011. 2.4. Judicial Review The full hearing will commence on the 26 September. The JCPCT will not make a final decision before the Judicial Review has concluded. 2.5. Safe and Sustainable Steering Group The Safe and Sustainable Steering Group met on 13 September to consider a range of advice from clinical stakeholders including advice on the future role of Children‟s Cardiology Centres (CCCs). 3.

UPDATE ON JOSC

The Yorkshire and Humber JOSC has met regularly throughout September to discuss their response to the proposals. During these meetings the JOSC has received evidence to assist it‟s response from YHSCG, EMBRACE, LTHT, the Yorkshire and Humber Congenital Cardiac Network Board, as well as patients and families. On 22 September the JOSC received evidence from the Yorkshire and Humber outgoing JCPCT representative Ailsa Chair and incoming representative Andy Buck, supported by Cathy Edwards and Matthew Day from YHSCG, to inform their draft response to the consultation. The Committee‟s draft response to the consultation will be discussed in a public meeting on Thursday, 29 September 2011 at Leeds Civic Hall. 4.

INFORMATION TO BE CONSIDERED BY THE JCPCT

The JCPCT will consider the following information before making a decision: 4.1. Capacity planning work -

Trusts have submitted their capacity planning data and this is being analysed at the moment Conclusions will be shared with providers in September and a report will go to the JCPCT in October

4.2. Independent data verification -

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Data regarding the number of procedures carried out is being independently verified and will be made available to the JCPCT before any decisions are made The 2010/11 CCAD figures for Yorkshire and Humber, broken down by PCT are included in Appendix 1. This briefing was also presented to the JOSC on 2 September.

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4.3. PWC testing of patient flows and network configuration -

Testing of assumed family travel patterns in 18 postcodes has been carried out by an independent body The Yorkshire and the Humber postcodes included in this work are: S, DN, WF, LS, HU, BD, HX, HD. The analysis involved focus groups and interviews with families and information from referring clinicians. The JCPCT is due to receive the report in October

4.4. Independent review of the relationship of interdependencies at the Royal Brompton Hospital -

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Adrian Pollitt is overseeing an independent panel of experts to review the potential impact of Safe and Sustainable proposals on other services at the Royal Brompton Hospital The panelâ€&#x;s findings will be made available to the JCPCT before any decision is made

4.5. The Royal Brompton and the Judicial Review -

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A court hearing took place on the 15th July at which the judge ruled that the review should not be stopped but that a full court hearing, which commences on 26 September, should take place Safe and Sustainable will take the opportunity to robustly defend the review and will consider the outcome of the hearing The Safe and Sustainable review timetable remains on track

4.6. Health Impact Assessment -

The interim Health Impact Assessment was published on 5 August. A detailed summary can be found Appendix 2.

4.7. The Public Consultation -

IPSOS MORI, an independent third party analysed the responses to the consultation and summarised their findings in a report published on 24 August. A detailed summary can be found in Appendix 3.

4.8. Secretariat Advice relating to retrieval of critically ill children from the Isle of Wight -

Jeremy Glyde, on behalf of the Secretariat, wrote to Sir Neil McKay on 1 September regarding the issue of retrieval of patients from the Isle of White. The Secretariat has advised the JCPCT that there is no available evidence that could reasonably suggest that a retrieval team from London or Bristol could reach the Isle of Wight in compliance with the time limits stipulated by the Paediatric Intensive Care Society (PICS) standards, even if the Isle of Wight is considered a remote area by a higher time threshold of 4 hours.

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5.

SERVICE PLANNING ISSUES -

It was recognised in the July briefing to PCT Boards that the best national configuration and preferable option for Yorkshire and the Humber could only be determined in considering the following pieces of information:

5.1. The Regional Impact Assessment The service planning issues highlighted in this assessment were fed into the JCPCT meeting on 30 June. These included; How do the numbers of children with multiple health needs in Yorkshire and Humber compare to other areas of the country? How would patient choice and clinician choice operate in the new system? What level of outreach services would be provided by each surgical centre and how would this compare to the current level of outreach services? Is the proposed presence of a childrenâ€&#x;s cardiology centre in areas where there is no longer a surgical centre a viable and sustainable model? A robust piece of work should be undertaken to assess the potential impact on all retrieval services and any knock on effects for existing paediatric and neonatal transport networks. What are the implications for adult congenital heart services? 5.2. The Report of the Public Consultation - Consideration of this report in both a national, and a Yorkshire and the Humber context is required. 5.3. The Interim Health Impact Assessment - Consideration of the impacts outlined in this report, and of mitigations suggested. 5.6. The PWC testing of patient flows and network configuration - This work is due to be received by the JCPCT in October. It is critical in understanding the best configuration nationally and in Yorkshire and the Humber. It will also help to address some of the service planning issues outlined in the July briefing.

23rd September 2011 Matthew Day, Public Health Registrar YHSCG Cathy Edwards, Director YHSCG

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APPENDIX 1

Safe and Sustainable: Updated 2010-11 Paediatric Cardiac Surgical Activity by PCT in Yorkshire and the Humber 1. Surgical Procedures 2010-11 1.1. This briefing presents the 2010-11 CCAD figures for Leeds Teaching Hospitals by PCT, superseding the 2009-10 figures presented and discussed in the YHSCG Regional Impact Assessment. Table 1. Surgical procedures performed at LTHT by age-group and PCT 2010/11. PCT Calderdale Bradford and Airedale Kirklees Rotherham Wakefield District Hull Leeds Sheffield North Yorkshire and York North Lincolnshire Barnsley Doncaster East Riding of Yorkshire North East Lincolnshire PCTs Outside Region Grand Total

Total Paediatric Rate/ 10,000 pop 21 5.58 57 5.29 39 4.99 20 4.38 23 4.13 17 3.87 46 3.69 23 2.63 32 2.55 7 2.55 9 2.27 11 2.12 9 1.70 4 1.41 18 336

1.2. 336 surgical procedures were performed at Leeds in 2010-11. Table 1 shows these figures by Primary Care Trust (PCT). 1.3. This represents an increase of 20 surgical procedures compared to the 2009-10 data. 1.4. The numbers of surgical procedures per 10â€&#x;000 paediatric population show that Calderdale has the highest rate per 10â€&#x;000 population for this years worth of data. Table 2: Surgical procedures 2010-11 by ethnic group Ethnic Group White British Asian or Asian British Unknown Black or Black British Mixed Any Other White Background Other Ethnic Groups Total

Grand Total Percentage 225 67% 63 19% 23 7% 13 4% 6 2% 3 1% 3 1% 336 100%

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1.5. The most common group of patients were of „White British‟ ethnicity. 1.6. 19% (63/336) of the surgical cases treated at Leeds in 2010/11 were from an „Asian‟ or „Asian British‟ ethnic group. 2. Discussion / Questions from JHOSC 2.1. The increases seen regionally from 2009-10 to 2010-11 are within what has been predicted for the region. The YHSCG Impact Assessment assessed the impact of the increasing population in the Region and predicted 5-6 cases per year for patients with Asian ethnicity. For the non-Asian paediatric population, which is also expected to increase in Yorkshire and the Humber, Analysis suggests this population could account for an extra 201 to 268 cases up to 2031. This equates to between 10 and 13 cases per year over this time period. 2.2. Why has there been an increase of x cases in my area? Eight of the 14 PCTs experienced an increase in surgical cases compared with 2009-10 figures. Six PCTs experienced a decrease in cases. For these PCTs, The change in rate from 2009-10 is not statistically significant and this type of fluctuation is common when we are looking at year on year changes for rare diseases or conditions such as congenital heart disease.

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APPENDIX 2 SAFE AND SUSTAINABLE: REVIEW OF CHILDREN’S CONGENITAL CARDIAC SERVICES IN ENGLAND INTERIM HEALTH IMPACT ASSESSMENT

1. BACKGROUND In October 2010 the National Specialised Commissioning Team commissioned Mott MacDonald to carry out a Health Impact Assessment of the reconfiguration Options for childrenâ€&#x;s heart surgery, to consider the positive and negative impacts that each proposed Option could have on: -

health outcomes and existing health inequalities; equality groups and deprived populations; travel and access to the services; and the resulting carbon dioxide emissions.

The HIA is also required to consider mitigation measures for any adverse consequences identified; highlight ways in which to enhance positive impacts; and make any suggestions for ways in which Options could be improved to maximise the quality of treatment and equality of outcomes. The findings of the HIA will be used, along with other evidence, to help inform the final decision about the future configuration by the Joint Committee of Primary Care Trusts (JCPCT); the decision-making body for the Review. The purpose of the interim report, published on 5th August, is to provide a comprehensive overview of emerging findings based on the assessment tasks undertaken to date. It is based on the evidence gathered during all of the research tasks undertaken for phases one (scoping) and two (data capture and engagement). The final HIA report will reflect and incorporate any additional relevant findings from the report of the public consultation and also include analysis of the preferred option of the JCPCT. 2. HIA PROCESS The HIA comprised the following stages: -Literature review -Socio-demographic analysis -Strategic stakeholder interviews -Production of a scoping report -Stakeholder engagement forums -One-to-one stakeholder interviews -One-to-one interviews with families -Focus groups with vulnerable populations -Detailed travel and access analysis -Carbon emission analysis -Impact analysis -Production of an interim report

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3. ENGAGEMENT WITH VULNERABLE GROUPS Extensive effort throughout the HIA process was made to engage with groups identified as vulnerable to service change and those in vulnerable postcode districts. The following steps were undertaken: Stakeholders representing people from vulnerable socio-demographic groups were invited to the engagement forums that were staged in seven cities across England to gain their views on how the proposed changes may affect the vulnerable populations. YHSCG, along with each of the other regional Specialised Commissioning Groups (SCGs) were asked to provide local contacts for the vulnerable groups identified so that these could be added to our stakeholder lists. Local assistance was regarded as important to maximise involvement from vulnerable groups. Consultations were undertaken with over 40 families who have a child undergoing heart surgery and who live within one of the vulnerable postcode districts. The numbers of families engaged from each area was determined by examining where journey time impacts would be most experienced in future; and Four focus groups with members of the Asian community and/or those living in areas of high social deprivation have been undertaken in Leeds, Bradford, Dewsbury and Belgrave (Leicester) In addition, for the next Phase of the assessment, IPSOS MORI have been asked to provide findings from the consultation for the specific vulnerable groups so that responses from these populations can be reviewed and incorporated into the assessment where appropriate. 4. KEY HEADLINES TO INFORM THE FINAL JCPCT DECISION 4.1. Concentration of surgical expertise onto fewer sites The HIA identified evidence to suggest that the concentration of surgical expertise onto fewer sites and the provision of more secondary care services closer to home is likely to benefit in terms of clinical outcomes for all children requiring paediatric cardiac services. Short and medium term impacts identified were; -

Capacity. Some centres would experience an increase in cases; Impact upon associated services such as ECMO, interventional cardiology, and ambulance provision and; Expertise. Short and long term impacts of staff unwilling to move centres.

4.2. Wider impacts upon patients and families The HIA acknowledges the impact the changes will have on those currently within the system and those who will require surgery in the future. The report notes that for those already in the system, relationships with clinicians and the teams that support them will be subjected to change.

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Long term impacts identified were around journey times. Particularly for those having to travel further the impact upon family well being as a result of lower access to family psychological support, increased costs and time away from home, and local cultural and religious support networks was noted. 4.3. Impact upon vulnerable groups The HIA considered in detail the groups likely to be disproportionately affected by the proposed changes. The impacts noted for this small proportion of patients were specifically in terms of journey times but also around psychological effects of having to travel further. This is specifically mentioned in relation to Asian communities due to their higher reliance upon cultural and religious support networks. 4.4. Travel and access impacts The HIA acknowledges that all reconfiguration options will lead to increases in some patients travel times. This is roughly consistent across all four options with around a third of patients likely to experience an increase of over one hour. Table 1 shows the impacts for each option. The report concludes that “Where increases in journey times are experienced, the most significant effects will be included as a result of cessation of paediatric cardiac surgical services at Leeds Teaching Hospital�. 4.5. Carbon emissions impact All options will result in net increase in carbon emissions due to the increases in distances and travel for some patients to the specialist surgical centre. 5. YORKSHIRE AND HUMBER SPECIFIC ISSUES 5.1. Concordance with Regional Impact Assessment -

The HIA aligns well with the findings reported in the Regional Impact Assessment presented to SCG Board in July 2011, covering similar issues and providing a detailed national analysis of areas such as travel and journey times.

5.2. Travel and access -

In terms of travel and access, the HIA specifically states that the most significant impact upon increases in journey times are experienced when Leeds is not included as a surgical centre. As also acknowledged in the Regional Impact Assessment, the report also specifically highlights the possible further impact caused by adverse weather conditions in the North of the country.

5.3. Impacts identified during focus groups -

The HIA reflects the issues captured at local focus group events in Bradford, Leeds and Dewsbury. Particularly in capturing the issues around family support and cultural religious support in its conclusions. These were identified in these groups as issues of high importance by our local population.

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Table 1. HIA travel time impact comparisn table

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APPENDIX 3 SAFE AND SUSTAINABLE: REVIEW OF CHILDREN’S CONGENITAL CARDIAC SERVICES IN ENGLAND REPORT OF THE PUBLIC CONSULTATION 1. RESPONSE TO THE CONSULTATION The consultation process has been significant in scope. A total of 55 public events, supplemented by focus groups and workshops have been held nationally over the course of the consultation period. The consultation focussed on three main areas; - The proposed new approach to care - The proposed quality standards - The proposed options for change A total of 74,178 responses have been received. Including approximately 37,000 hard copies, 22,119 text message responses, and 14,000 online responses. Responses were also received in the form of e-mails and letter (~300). Of the 47,360 responses stating the respondents region, 3,446 (7%) were received from Yorkshire and the Humber. In contrast, 23,378 (49%) were received from the East Midlands and 10,126 (21%) from South Central. Of the 50,332 responses where ethnicity was stated, 10,279 (20%) were from individuals from minority ethnic backgrounds, the majority of which were from the Asian or Asian British ethnic group. Twenty-five petitions from across the country were received. The largest of which was from the Children‟s Heart Surgery Fund, in support of Leeds Teaching Hospitals NHS Trust with nearly half a million signatures. 2. CONSULTATION ANALYSIS IPSOS MORI undertook the analysis of the consultation. The analysis involved using validated methods to code each response into various „themes‟. The coding algorithm was approved by Safe and Sustainable. Themes were added over the course of the analysis as appropriate. Coding was undertaken by a coding team at IPSOS MORI and each form was double checked by a coding supervisor. The analysis is presented in both a quantitative and qualitative format. The analysis is split throughout to distinguish between „personal‟ and „organisational‟ respondents. In some cases greater detail is provided in terms of geographical areas and also demographic sub-groups such as those living with Congenital Heart Disease (CHD) or those from minority ethnic groups. 3. KEY HEADLINES 3.1. New Approach to Care The report highlights that there was strong support amongst respondents for the Key Principles underpinning the new approach to care, these are:

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Children: the need of the child comes first in all considerations Quality: all children in England and Wales who need heart surgery must receive the very highest standards of NHS care. Equity: the same high quality of service must be available to each child regardless of where they live or which hospital provides their care. Personal service: the care that every congenital heart service plans and delivers must be based around the needs of each child and family Care close to families home where possible: Other than surgery and interventional procedures, all relevant cardiac treatment should be provided by competent experts as close as possible to the child‟s home.

3.1.1. Case for change There was support for the concept that change will ensure the future safety of the service. However, there were differences between personal responses and other responses here, with more personal responses likely to disagree with this principal. The highest level of opposition was expressed with regard to the statement that “without change the service will not be safe or sustainable in the future”. Amongst those responding to this question there was more support amongst organisations than personal respondents. Opposition was highest amongst those who have CHD themselves. The issue of „high volume and clinical quality‟ underpinned the level of opposition in this area, particularly around the rationale for the 400 minimum procedures proposed for designated Specialist Surgical Centres. 20% of personal respondents queried the evidence relating to the 400 procedures a year. There was strong support for the need for 24/7 care, however, which leads to the proposal for a minimum of four surgeons and so a minimum of 400 cases at each centre. 3.1.2. Specialist Surgical Centres There was support for interventional cardiology to be provided only by the designated Specialist Surgical Centre. 57% of personal respondents and 75% of organisational respondents supported the proposal. Respondents commenting on this proposal highlighted that greater clarity was required as to what will happen to those nonsurgical centres which currently provide the service. There was strong support for the need for 24/7 care in each of the Specialist Surgical Centres. 3.1.3. Children’s Cardiology Centres Less than half of personal respondents indicated support for non-designated units to become Children‟s Cardiology Centres supporting these for non-designated surgical centres Comments focussed on how different to DGHs these would be.

3.1.4. Congenital Heart Networks Support for Congenital Heart Networks was relatively high across the majority of the different sub-groups responding to the public consultation. Of respondents commenting specifically, there was a concern that some areas may be left without Z:\Corporate Services\Meetings\Cluster Partnership Meetings\Oct 11\06b PCT Brief Safe and Sustainable Review - 23 September 11.doc

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adequately trained cardiologists. There were also concerns about the networks in terms of quality, how autonomous they might be, and how continuity would be maintained. 3.1.5. Mortality and Morbidity Data There was strong agreement that systems should be implemented to improve the collection, reporting and analysis of mortality and morbidity data. 3.2. Quality Standards There was strong support surrounding the proposed quality standards, which comprise seven key themes: -Congenital Heart Networks -Prenatal Diagnosis -Specialist Surgical Centre -Age Appropriate Care -Information and Making Choices -The Family Experience -Ensuring Excellent Care Issues specifically highlighted by respondents in relation to the Quality Standards included that of the benefits of co-location of maternity, neonatal care and the cardiac unit, as well as highlighting the importance of pre-natal diagnosis. 3.3. The Options for Change 3.3.1. Specialist Surgical Centre Options London Three-quarters of respondents supported the proposal for two Specialist Surgical Centres in London (75% of personal respondents and 74% of organisations responding). Almost half of respondents from London supported the proposal for two Specialist Surgical Centres in London (47% of those responding). The majority supported the proposed choice of Great Ormond Street Hospital for Children NHS Trust and Evelina Children’s Hospital (65% of personal respondents and 56% of organisations responding). 3.3.2. Specialist Surgical Centre outside London Option A received the highest level of support from personal respondents (58%) followed by Option B (34%). The majority of respondents to the consultation were from the East Midlands and South Central regions. Outside these two regions, more respondents supported Option B, as did organisations. There were lower levels of support for Options C and D, with Option D receiving most support from respondents in the Yorkshire and Humber region.

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4. YORKSHIRE AND THE HUMBER SPECIFIC HEADLINES There were some areas of the consultation where responses from Yorkshire and the Humber were specifically highlighted. These related to the following areas; Of the 3,446 Yorkshire and Humber responses, over 90% supported option D as the preferred option. The principle of „Care closer to home‟ was less well supported by personal respondents from the Region. 72% of responses from Yorkshire and the Humber disagreed with the principle that care, apart from interventional cardiology and paediatric cardiac surgery should be delivered closer to home. Reasons for the high disagreement highlighted specific concerns regarding the co-located care they currently receive, which includes interventional cardiology and surgical services. A large number of respondents commented on individual hospitals rather than views on specific configurations. Leeds was commented on favourably due to it‟s ability to provide a range of services in one location and because of its central location and large population served. The role of Children‟s Cardiology Centres was also noted as a concern for Yorkshire and Humber respondents; particularly around the differences between this and a DGH. The largest petition received, with nearly half a million signatures was in support of Leeds Teaching Hospitals. Clarification is required as to how this and other petitions will be taken into account by the JCPCT. 5. OTHER KEY ISSUES 5.1. Level of response Where percentages are given, such as when analysing support for the options for change, it is important to note that these are skewed by the high proportion of respondents from the East Midlands and South Central regions. 5.2. Patient flows Respondents were asked for any comments on the assumptions made concerning how the postcodes have been assigned in any of the four options. The majority of comments received were negative, the most common of which stated that the assumptions ignore patient choice.

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