DRAFT Programme Initiation Document New congenital heart disease review October 2013 Version 1.0
DRAFT Programme Initiation Document New congenital heart disease review Programme Initiation Document (PID) The purpose of this document is to provide an overview of the plans for conducting the new review of congenital heart disease. It provides a baseline against which the Board can assess progress, issues and ask on-going viability questions. The PID also provides a useful single source of reference for others to quickly and easily find out what the project is about. It answers the following questions: What is the programme aiming to achieve? Why it is important to achieve it? Who will be involved and what are their responsibilities? How and when will it happen? The PID describes the programme controls in place and assures stakeholders that: The programme has a plan, which clearly communicates the objectives, scope and deliverables, governance, budget and proposed timescales. Programme roles and decision making protocols are clearly defined. The tools in place to assess the progress, success and ongoing viability of the programme are: A risk register An issues register A programme plan with defined key milestones. A communications and engagement plan Defined reporting schedule Status: DRAFT Next Review Date: Page 2 of 26
Document information File Reference S:\LHP\New CHD Review\PMO\PID\Draft PID v00.09.docx Owner Michael Wilson, Programme Director Revision history Version Date Author Reason for amendment 00.01 15.08.13 Lauren Philips 00.02 16.08.13 Michael Wilson 00.03 2.09.13 Michael Wilson 00.04 11.09.13 Michael Wilson 00.05 15.10.13 Michael Wilson 00.06 16.10.13 Jane Docherty 00.07 17.10.13 Jane Docherty 0.08 18.10.13 Lauren Phillips 0.09 18.10.13 Michael Wilson Amendments following review Amendments following review Amendments following review. Prepare first complete draft for Programme Board Prepare first complete draft for Programme Board Prepare first complete draft for Programme Board Prepare first complete draft for Programme Board Prepare first complete draft for Programme Board 1.00 18.10.13 First complete draft for Programme Board Summary of key changes First Draft General Changes to description of proposed scope Changes to proposed description of scope. Addition of objectives Stakeholder engagement and participation, updated ToR Programme plan added Formatting Final amendments Reviewed by Michael Wilson John Holden CIAG Executive (scope only) Michael Wilson Programme Board Status: DRAFT Next Review Date: Page 3 of 26
Related Documents This document should be read and approved in conjunction with the following: Name Risk Register Issues Log Plan Stakeholder Engagement Strategy Communication and Engagement Plan Communications Protocol Owner Lauren Phillips, Programme Development Manager Lauren Phillips, Programme Development Manager Michael Wilson, Programme Director Claire McDonald Claire McDonald Claire McDonald Status: DRAFT Next Review Date: Page 4 of 26
Contents 1 Background... 6 2 Definition... 7 2.1 Aims... 7 2.2 Objectives... 7 2.3 Scope and Exclusions... 7 2.4 Dependencies and Interfaces... 8 2.5 Constraints... 8 3 Approach... 9 3.1 Overview... 9 3.2 Assumptions... 10 3.3 Plan... 10 3.4 Stakeholder engagement and communications... 12 4 Equality and Health Inequalities... 14 5 Organisation and Capability... 16 5.1 Governance... 16 5.2 Decision making... 16 5.3 Advisory... 19 6 Resource... 24 6.1 Programme Budget... 24 6.2 Budget control and accounting procedures... 24 6.3 Resource plan... 25 7 Management Controls... 25 7.1 Meetings and reporting... 25 7.2 Change Control... 26 7.3 Risks and Issues... 26 Status: DRAFT Next Review Date: Page 5 of 26
1 Background Congenital heart disease is a defect of the heart that develops in the womb (unlike acquired heart disease that develops after birth). Congenital heart disease is one of the most common types of birth defect, affecting up to 9 in every 1,000 babies born in the UK. It is sometimes diagnosed in the womb, but often not identified until after birth and may even remain un-detected until adulthood. The number of babies diagnosed after birth varies considerably across the country. Higher rates of pre-natal diagnosis are needed to improve the care available to the child. NHS cardiac surgery for children is currently provided by 10 hospitals in England. Specialist paediatric cardiology is also provided by a further three centres. Around 3,700 paediatric surgical procedures and 2,000 paediatric interventional cardiology procedures are carried out each year. For adults, around 850 surgical procedures and 1,600 interventional cardiology procedures are carried out each year and reported to NICOR by 25 hospitals in England, however a further 10 hospitals have undertaken procedures in recent years but not provided data to NICOR. While many people diagnosed with congenital heart disease will never need surgery, most will need treatment over their life and therefore require specialist review during childhood and adulthood. Surgery may take place during infancy, childhood or adulthood. Sometimes urgent surgery can be needed only hours after birth. The number of adults living with congenital heart disease has increased in recent years as clinical outcomes following surgery in childhood have improved - about 80% of children with congenital heart disease will survive into adulthood. Concerns have been raised about the need to improve the transition between paediatric and adult congenital heart disease services. Following the outcome of judicial review, the report by the Independent Reconfiguration Panel (IRP) and the Secretary of State s announcements relating to the Safe and Sustainable review of children s congenital heart services, in summer 2013, NHS England established a new review to consider the whole lifetime pathway of care for people with congenital heart disease. Continued uncertainty is a risk to the service and unsettling for patients, so the new review must be completed as quickly as possible. The review will aim to achieve new levels of transparency and the highest levels of genuine participation. This will need a new approach that mobilises NHS England s resources from right across the organisation and in which partners and stakeholders help us to design the way forward. The board of NHS England has set an ambition that by June 2014, working closely with stakeholders, we will have developed, tested and revised a proposition, undertaken work to identify a preferred approach to implementation, and completed the necessary preparatory work. Status: DRAFT Next Review Date: Page 6 of 26
2 Definition 2.1 Aims The aim of the programme is to ensure that services for people with congenital heart disease are provided in a way that achieves the highest possible quality, within the available resources, now and for future generations. secure the best outcomes for all patients, not just lowest mortality but reduced disability and an improved opportunity for survivors to lead better lives; tackle variation so that services across the country consistently meet demanding performance standards and are able to offer resilient 24/7 care; and deliver great patient experience, which includes how information is provided to patients and their families, considerations of access and support for families when they have to be away from home. 2.2 Objectives The objectives of the programme are to: to develop standards to give improved outcomes, minimal variation and improved patient experience for people with congenital heart disease; to improve antenatal and neonatal detection rates; to analyse the demand for specialist inpatient congenital heart disease care, now and in the future; to make recommendations about the function, form and capacity of services needed to meet that demand and meet quality standards, taking account of accessibility and health impact; to establish a system for the provision of information about the performance of congenital heart disease services to inform the commissioning of these services and patient choice; and to make recommendations on the commissioning and change management approach including an assessment of workforce and training needs. 2.3 Scope and Exclusions Following a period of engagement there is broad agreement that the core scope of the review is: a) improving the quality of care for people with suspected or diagnosed congenital heart disease (CHD) along the whole patient pathway: Fetal diagnosis of CHD Status: DRAFT Next Review Date: Page 7 of 26
Pre-natal care Care for babies, children and young people Transition from children s services to adult Care for adults End of life care b) Care and support for families suffering bereavement or poor outcomes c) All care for CHD commissioned by the NHS for people living in England. Further work is underway to agree the relationship between the review and a range of other conditions and services. Similarly the relationship to the NHS in the devolved administrations will be determined. It is expected that the scope of the review will be agreed by the Board Task and Finish Group at its meeting on 29 October 2013. 2.4 Dependencies and Interfaces The programme is dependent on wider NHS England strategy review work and specialised services commissioning. The new CHD review will be an early adopter and co-developer of NHS England s emerging approach to commissioning specialised services. Our support for delivering sustainable care is exemplified through our approach focused on standards and specifications, and the CRG process. Effective implementation of improved congenital heart services in England depends on effective commissioning of these services. Direct commissioning of specialised services is be led by four regional commissioning leads. 10 of the NHS England s 27 area teams lead locally on specialised services contracting implementing a single national operating model. Each will manage the contract with its local provider(s). To ensure alignment the Director of Commissioning (Corporate) - Ann Sutton - is a member of the programme board, and the National Clinical Director of Specialised Services, James Palmer, is a member of both the programme board and the clinical advisory panel, as well as leading the relevant work stream of the NHS England strategy programme. 2.5 Constraints The programme will manage the balance of finance, time and quality constraints. Where these constraints cannot be reconciled the issue will be escalated to the programme SRO and programme board. Status: DRAFT Next Review Date: Page 8 of 26
3 Approach The review will adopt the following principles: Patients come first: the new review has patients and their families at its heart, with a relentless focus on the best outcomes now and for the future. That aim over-rides organisational boundaries. Retaining what was good from earlier work: although the JCPCT s decision on configuration of children s congenital heart services has been overturned, much else was developed as part of that process and the subsequent implementation programme including a model of care, service standards, and well-developed thinking about network working. Similarly standards for adult services have also been developed and are ready for formal consultation. This work has had extensive clinical and patient input and has the potential to be applicable to whatever service configuration is decided. Therefore NHS England will work with stakeholders to determine how much of this work can be retained. Transparency and participation: NHS England is committed to openness, transparency and participation. We will work with user, clinical and organisational stakeholders to ensure that we develop an approach to take the work forward that is true to those values. Our work will be grounded in standards, rigour, honesty and transparency. Evidence: the Independent Review Panel s report reflected criticism of the way in which Safe and Sustainable used evidence to support its conclusions. The new review will be clear about the nature and limitations of the available evidence, and about any intention to rely on expert opinion in the absence of evidence. Notwithstanding the comment above about retaining what was good, we have no preconceived notions about the outcome. Wherever there is an assumption it will be made explicit, and justified. Early decisions: where we find agreement and if there is the opportunity to formalise this and to take action to improve care or reduce uncertainty, as the review continues, we will do so. 3.1 Overview At its meeting on 18 July 2013 the NHS England Board set an ambition that by June 2014, it would have: developed a proposition for the future of congenital heart disease services; undertaken work to identify a preferred approach to implementation; and completed the necessary preparatory work. This should be done working closely with stakeholders. Status: DRAFT Next Review Date: Page 9 of 26
The challenge for NHS England is how to ensure that services for people with congenital heart disease are provided in a way that achieves the highest possible quality, within the available resources, now and for future generations: The review s aim is to agree an implementable solution by June 2014. As discussed above this will include the development of: a specification for children s and adult congenital heart services; and a recommended commissioning and change management approach including an assessment of workforce and training needs. 3.2 Assumptions The project approach has been defined with the following assumptions: We have an ambition that congenital heart disease services in England should be the best in the world. Whilst care for people with congenital heart disease is generally good, it could be better. Improvement could be achieved through the use of standards based commissioning and networked working of providers. It is not assumed that fewer surgical units are necessarily required. This is not at this stage known and understanding the ideal capacity and configuration for the service are not assumed. It is assumed that occasional surgical practice and surgical practice in centres unable to meet the required standards should be addressed. 3.3 Plan In a paper for the NHS England board on 18 July 2013, the board set an ambition that NHS England must bring forward an implementable solution within a year, ie by the end of June 2014. This paper included a high level programme plan with indicative timetable. This will be superseded by a full programme plan to be developed following agreement of this PID by the programme board and in particular the objectives (described in 2.2 above) and the deliverables and benefits (described in 3.3.1 below). 3.3.1 Deliverables and Benefits Programme component Programme set up Deliverable A programme initiation document A risk register An issues register A programme plan with defined key milestones. Benefit Sound programme definition and control Status: DRAFT Next Review Date: Page 10 of 26
Engagement and Communications Programme objectives A communications and engagement plan Defined reporting schedule Decision making and advisory groups (Board Task and Finish Group; Clinical Advisory panel; Programme Board) Engagement groups (Patient and Public Group; Clinician Group; Provider Group) Comprehensive engagement and communications activity Standards and specifications for congenital heart disease services An analysis of the demand for specialist inpatient congenital heart disease care, now and in the future Recommendations about the function, form and capacity of services needed to meet that demand and meet quality standards, taking account of accessibility and health impact. Recommendations on the commissioning and change management approach including an assessment of workforce and training needs. Partnership agreement with other relevant NHS and third sector organisations on a shared approach to improving antenatal and neonatal detection rates Clarity about the needs of service users Understanding of the process and the challenges to be addressed Ownership of the process and outcome of the review by service users, clinicians, providers and politicians. Improved outcomes and patient experience and consistent services Improved antenatal and neonatal detection rates Status: DRAFT Next Review Date: Page 11 of 26
A systematic, authoritative transparent and timely system for the provision of information about the performance of congenital heart disease services Improved commissioning Informed patient choice Improved outcomes and patient experience and consistent services This section should be read in conjunction with Related Documents (see page 4). 3.4 Stakeholder engagement and communications This section should be read in conjunction with Related Documents (see page 4). The review will develop a comprehensive programme of engagement with a full range of stakeholders to ensure that it is able to hear all voices, including those that find it hard to be heard. A full engagement and communications plan is being developed. Those with an interest will be encouraged to register as stakeholders (through the Clinical Reference Group stakeholder registration system). As part of the application process stakeholders are able to select their desired level of engagement, which may range from simply being kept informed about developments; a more active form of engagement such as attending focus groups and responding to surveys, to reading and commenting on draft documents prior to their publication or being notified of any future formal consultation process. 3.4.1 Participation Service users, the public, clinicians, professional organisations and NHS hospitals that provide congenital heart services are crucial stakeholders in the review. The ways in which representatives from these groups participate in the review are described below. While separate arrangements are described for the various different stakeholders, there may also be occasions when the review brings together a wider cross-section of stakeholders. a) Patients, carers and the public Representatives of patients and carers participate through the Patient and Public Group. It is proposed that a single group will be convened, comprising two nominated representatives from each relevant national and local charity or support group. Healthwatch England will be invited to join this panel. b) Clinical Professional Associations and Royal Colleges participate through membership of the Clinical Advisory Panel, the Clinicians Group and the Clinical Reference Groups (CRGs). Status: DRAFT Next Review Date: Page 12 of 26
Clinicians working in congenital heart services participate through membership of the clinicians group and through membership of the relevant clinical reference groups. Clinical members of the CRGs are nominated by the 12 Clinical Senates that cover the whole country (described in full here http://www.england.nhs.uk/wpcontent/uploads/2013/01/crg-guide.pdf ). Each CRG also has four professional association representatives. All clinicians may also register as stakeholders of the CRG(s). It is proposed that the membership of the clinician group will include representatives of the relevant professional associations and colleges including the main clinical professions involved in delivering congenital heart services as well as clinicians from all centres undertaking regular surgery or interventional cardiology procedures: Representatives of all children s CHD specialist surgical centres and children s cardiology centres. Representatives of Adult Congenital Heart Disease surgical centres (excluding those that only deal with patent foramen ovale (PFO), which is a type of atrial septal defect, closure of which was not defined as specialist congenital surgery by the ACHD advisory group). c) Provider organisations Organisations providing CHD services participate through membership of the Provider Group. It is proposed that the membership of the Provider Panel will include Chief Executives (or their nominees) from all centres undertaking congenital heart surgery or interventional cardiology procedures. 3.4.2 Wider Engagement a) Users and the public Targeted approaches will be developed for engaging directly with children and young people, adults with CHD (who are less represented through national and local charities), vulnerable groups and other groups that might be affected by the review. The review has approached Healthwatch England to seek its advice on appropriate engagement with both national and local Healthwatch groups. b) Clinicians Targeted approaches will be developed for engaging with clinicians and managers providing district cardiology services and with clinical commissioning Status: DRAFT Next Review Date: Page 13 of 26
groups (CCGs) who commission District General Hospital (DGH) level paediatric services. c) Local and national government MPs and peers will be engaged through the All Party Parliamentary Group for heart disease. Other means for engaging MPs will be considered. NHS England will engage with all interested over scrutiny committees providing opportunity for them to contribute to the review process. A meeting will be arranged with council leaders, health and wellbeing chairs, local Healthwatch groups and others from the councils with specialist congenital units in their areas. As well as providing a briefing this will be an opportunity to explore the appropriate methods for continued engagement, for example how best to work with oversight and scrutiny. NHS England will also continue to work with partner organisations (the Local Government Association and the Centre for Public Scrutiny) to ensure that local government is appropriately engaged. 4 Equality and Health Inequalities Equality The Equality Act 2010 came into force from 1 October 2012 and covers the following nine protected characteristics: age disability gender-reassignment marriage and civil partnership pregnancy and maternity race religion or belief sex; and sexual orientation. Some groups with these characteristics also experience health inequalities. Health Inequalities The Health and Social Care Act 2012 contains specific legal duties in respect of health inequalities for NHS England. Specifically, the NHS England Board must, in the exercise of its functions, have regard to the need to (a) reduce inequalities between patients with respect to their ability to access health services; and Status: DRAFT Next Review Date: Page 14 of 26
(b) reduce inequalities between patients with respect to the outcomes achieved for them by the provision of health services. (Section 13G) The duty applies to all of NHS England s functions. The Act does not define a list of groups impacted by the duties. Ministers argued that not setting out a list means that any group experiencing health inequalities are covered. Health inequalities are manifested across a range of dimensions including: socio-economic group geographical areas (particularly by deprivation) gender black and minority ethnic groups age groups (from pre-birth to death) low educational attainment vulnerable groups and those with special needs (including people with physical or learning disabilities, mental health issues, people who are unable to heat their homes adequately, rough sleepers, homeless people, gypsies and travellers, sex workers, prisoners and their families, vulnerable migrants, refugees and asylum seekers, looked after children and care leavers, people with long-term or complex medical conditions, some religions or beliefs, gender reassignment, sexual orientation, carers.) The health inequalities duties go further than the public sector Equality Duty by dealing with health inequalities for any group with poor health status from any cause that is avoidable. The programme for the new congenital heart disease review aims to promote equality and reduce health inequalities by ensuring the whole population of England has access to services that meet the same high performance standards. These will be set out by NHS England which is the responsible commissioner as part of the service specification. We are already aware of groups where there is an increased incidence of congenital heart disease. For example, the occurrence of congenital heart disease in newborn babies with Down s Syndrome is around 50%. The review team will continue to work with the NHS England Equality and Health Inequalities team to ensure that all aspects of the review are proceeding with regard to the duties detailed above and with a focus to promote equality and reduce health inequalities wherever possible. Status: DRAFT Next Review Date: Page 15 of 26
5 Organisation and Capability 5.1 Governance The governance arrangements for the new Congenital Heart Disease review are complex due to the number of bodies and our desire to ensure the widest possible participation. But these arrangements can essentially be divided into two parts: 1). Decision making, and 2). Advisory. This note explains which groups are decision making and which are advisory, and sets out how the work of the advisory groups feeds in to the decision making process. 5.2 Decision making 5.2.1 NHS England Board Decisions affecting the commissioning and delivery of congenital heart disease services as a result of the review will be taken by the full NHS England board. 5.2.2 Board Task and Finish Group The NHS England board has established a task and finish group to oversee the review, to provide assurance to the board and to provide strategic direction to the programme on behalf of the board. In this capacity the group will take decisions on the direction and running of the review. The task and finish group will make recommendations to the board on the actions to be taken as a result of the review, in particular decisions affecting the commissioning and delivery of congenital heart disease services. Role and Responsibilities The role of the Task and Finish Group is to: provide strategic direction to the new Congenital Heart Disease review on behalf of the Board; provide assurance to the Board that the work of the review is aligned with the aims stated above and NHS England s other strategic priorities; advise the Board on particular issues in relation to the review and also on any decisions which the Board may be required to make; and where required, commission work and / or request further information from the Programme Board in order for the Group to fulfil its function. The Task and Finish Group will be responsible for the following: making arrangements for the proper governance of the review and its programme of work; Status: DRAFT Next Review Date: Page 16 of 26
appointing a senior responsible owner for the programme; taking decisions on the direction and running of the review; ensuring that arrangements are in place to provide the group with clinical advice and the review with clinical leadership; assuring the board that appropriate arrangements have been made for the engagement of stakeholders in the review; resolving any issues and risks escalated by the Programme Board; ensuring that the review is properly resourced including ensuring that the review is a priority for the whole organisation and that the resources of the whole organisation are appropriately mobilised to support the work; making recommendations to the board on the actions to be taken as a result of the review, in particular decisions affecting the commissioning and delivery of congenital heart disease services; and at the end of Phase 3 (preparation for implementation), providing a recommendation to the Board in respect of ongoing governance arrangements in light of any decisions made and plans for implementation. Membership The core membership of the Task and Finish Group is as follows: Professor Sir Malcolm Grant, NHS England Chair (Chair); Ed Smith, NHS England Non-Executive Director ; Margaret Casley-Hayford, NHS England Non-Executive Director; Professor Sir Bruce Keogh, National Medical Director; and Bill McCarthy, National Director: Policy. Professor Sir Michael Rawlins, Chair Clinical Advisory Panel The Task and Finish Group will meet at the end of each phase of the programme and on such occasions as the Chair shall deem necessary. 5.2.3 Programme Board The programme board is responsible for ensuring that the programme delivers its objectives and for ensuring that there is a comprehensive and effective approach to stakeholder participation and involvement. It will manage all aspects of the review s work and take day to day decisions on the running of the review. It reports to and makes recommendations to the task and finish group. The programme board will have regard for the views of the provider group, the user, family and representatives group, the lead clinicians group and the clinical advisory panel. Role and Responsibilities The programme board will Status: DRAFT Next Review Date: Page 17 of 26
Support the SRO (Senior Responsible Owner) in managing all aspects of the review s work, taking day to day decisions on the running of the review: Takes overall responsibility for the effective running of the programme; Approves the: o Programme initiation document; o Programme plan and milestones; o Communications and engagement plan; and o Plan for evaluation. Agrees significant variations to the programme plan; Monitors and manages programme progress; Provides visible leadership, direction and commitment to the programme, promoting effective communication of the programme s goals and progress; Ensures availability of essential programme resources; Reports to the Board Task and Finish Group. Ensure that the programme delivers its objectives: o Develops standards to give consistent services, improved outcomes, and improved patient experience for people with CHD. o Analyses the demand for specialist inpatient CHD care, now and in the future. o Makes recommendations about the function, form and capacity of services needed to meet that demand and meet quality standards, taking account of accessibility and health impact. o Makes recommendations on the commissioning and change management approach including an assessment of workforce and training needs. o Establishes a system for the provision of information about the performance of CHD services to inform the commissioning of these services and patient choice. o Improves antenatal and neonatal detection rates. Manage risks and issues: o Owns risks and issues and develop proposals for mitigation / resolution. o Ensures that all material risks and appropriate mitigating actions are recorded in the risk register. o Escalates risks to the Board Task and Finish Group as necessary. Ensures that there is a comprehensive and effective approach to stakeholder participation and involvement. Membership The core membership of the Programme Board is as follows: Bill McCarthy National Director: Policy (Chair); John Holden, Director of System Policy (Vice Chair); Chris Hopson, Chair of the review s Provider Group; Professor Sir Bruce Keogh, National Medical Director; Professor Deirdre Kelly, Chair of the review s Clinician Group; Status: DRAFT Next Review Date: Page 18 of 26
Mr James Palmer, National Clinical Director, Specialised Services; Professor Sir Michael Rawlins, Chair of the Clinical Advisory Panel; Ann Sutton, Director of NHS Commissioning (Corporate); Professor Peter Weissberg, Chair of the review s patient and public group; Giles Wilmore, Director for Patient & Public Voice & Information; and Michael Wilson, Programme Director. The New Congenital Heart Disease Review Programme Board meeting will be held monthly and on such other occasions as the Chair shall deem necessary. 5.3 Advisory 5.3.1 Clinical Advisory Panel The clinical advisory panel will ensure that the review secures the best outcomes for all patients and tackles variation so that services across the country consistently meet demanding performance standards and offer resilient 24/7 care. The panel will provide clinical leadership to the review and will consider the work of the review in a broad strategic clinical context, bringing their experience from across a wide range of specialties as well as an international perspective. The panel will advise on all clinical aspects of the review and the review s approach to clinical engagement. It will also advise on the need to develop improved metrics and information systems to drive improvement, systems to monitor the safety and quality of services and advise on and oversee the evaluation of the work of the review. The clinical advisory panel will have regard for the views of the clinical reference groups, the lead clinician panel and the patient and public group. The clinical advisory panel will make recommendations to the task and finish group and the programme board. Role The role of the Clinical Advisory Panel is as follows: To advise on how the programme should achieve the best clinical outcome for patients, and tackles variation so that services across the country consistently meet demanding performance standards and offer resilient 24/7 care. To advise on the metrics and information systems needed by NHS England as commissioners: o To measure outcomes (mortality, disability and quality of life). o To drive improvement. o To monitor the safety and quality of services. To advise on the evaluation of the work of the review. Status: DRAFT Next Review Date: Page 19 of 26
To support the National Medical Director in the design and implementation of an effective approach to clinical engagement. To advise on all clinical aspects of the programme including providing expert opinion on a range of specific issues, including quality assurance of supporting work. To provide clinical leadership to the programme, facilitate clinical discussions and to act as advocates for the programme. To advise on clinical workforce and training issues. To advise on how to align leading edge research and clinical practice. The clinical advisory panel will have regard for the views of the clinical reference groups, the clinician panel and the patient and public group. Membership Professor Sir Michael Rawlins, President, Royal Society of Medicine (Chair); Dr Hilary Cass, Royal College of Paediatrics and Child Health; Dr Jacqueline Cornish, National Clinical Director for Children and Young People (NHS England) Professor John Deanfield, Chair of Adult with Congenital Heart Disease Advisory Group ; Professor Huon Gray, National Clinical Director for Cardiac Care (NHS England); Professor Deirdre Kelly, Chair of the review s Clinician Group; Dr Andy Mitchell, Regional Medical Director (London), (NHS England); Professor Pedro del Nido, International Advisor; Mr James Palmer, National Clinical Director (Specialised Services), (NHS England); Mr James Roxburgh, Society for Cardiothoracic Surgery; Dr Tony Salmon, Chair of the review s Standards Sub Group; Fiona Smith, Royal College of Nursing; Professor Terence Stephenson, Academy of Medical Royal Colleges; Professor Peter Weissberg, Chair of the review s Patient and Public Group; and Professor Norman Williams, Royal College of Surgeons. The Clinical Advisory Panel meeting will be held every two months and on such occasions as the Chair shall deem necessary. The advice of the panel may also be sought via email between meetings 5.3.2 Patient and Public Group The patient and public group will advise on all aspects of the review that affect service users, helping to ensure that the review results in great patient experience (including the way information is provided to patients and their families, considerations of access and support for families, including when they have to be away from home). The group will advise on the review s approach to patient and public engagement and provide a user perspective on emerging proposals. Status: DRAFT Next Review Date: Page 20 of 26
The patient and public group advise the programme board and the clinical advisory panel through its chair, Professor Peter Weissberg. 5.3.3 Provider Group The provider group will advise on all aspects of the review that affect service provision and the organisations that provide those services, ensuring that the review secures the best outcomes for all patients, tackles variation, achieves resilient 24/7 care and provides great patient experience. The group will advise on organisational, financial and workforce issues, as well as implementation planning and risk mitigation. The provider group advises the programme board through its chair, Chris Hopson of the Foundation Trust Network. 5.3.4 Clinician Group The clinician group will advise on all clinical aspects of the review, to ensure that the review secures the best outcomes for all patients, tackles variation through the consistent application of performance standards and achieves resilient 24/7 care. The group will provide advice based on its specialist experience. It will consider the impact of the review on the provision of clinical services, bringing members experience from across the specialist providers of congenital heart services and the main clinical professions involved in delivering that care. The group will advise on the review s approach to clinical engagement. It will also advise on workforce and training issues. The clinician group advises the clinical advisory panel and programme board through its chair, Professor Deirdre Kelly. 5.3.5 Clinical Reference Groups Clinical Reference Groups (CRGs) provide NHS England with clinical leadership and user engagement in specialised commissioning. CRGs exist in their own right and were not created for, nor are they part of the structure of, this review. But their work is fundamental to the development of service specifications on which this review will rely. CRGs develop commissioning products, including scope of services; policies; service specifications; and quality measures and dashboards. Service specifications set out what is expected from service providers, and define access to a service and include standards. The work of the review is related to a number of CRGs: A9: Complex Invasive Cardiology A10: Cardiac Surgery A18. Heart & Lung Transplantation D16. Adult Critical Care E05: Congenital Heart Services E07. Paediatric Intensive Care E08. Neonatal Critical Care Status: DRAFT Next Review Date: Page 21 of 26
E11. Specialised Maternity Services E12: Fetal Medicine Once the review s work of developing proposed standards for congenital heart disease services has been concluded, the standards will be passed to the congenital heart CRG to be included in a proposed updated specification. This specification will be subject to a full 12 week public consultation. The CRGs are not decision-making bodies but make recommendations to NHS England. (More information on clinical reference groups can be found here http://www.england.nhs.uk/resources/spec-commresources/npc-crg/). The review will link with the CRGs through the Clinical Director (Specialised Services), the National Clinical Director for Children, Young People and Transition to Adulthood and the National Clinical Director for Cardiac. 5.3.6 Clinical Implementation Advisory Group The Clinical Implementation Advisory Group (CIAG) was established in autumn 2012 to advise NHS commissioners on relevant clinical issues on the implementation of the July 2012 Safe and Sustainable Joint Committee of Primary Care Trusts (JCPCT) decisions. CIAG established working groups on networks and on cardiology standards. NHS England asked CIAG to complete this work before handing over to the Clinical Advisory Panel: a) Review work on establishing children s congenital heart networks in light of the scope of the new review, to consider how the proposals should be adapted to include the whole pathway of care, including adults with CHD. b) Bring to a conclusion work on additional standards for children s congenital heart services, ensuring that the read across from Safe and Sustainable standards to the new/additional children s standards and to the adult standards is made transparent. CIAG links to the clinical advisory panel through its chair, Professor Deirdre Kelly. Status: DRAFT Next Review Date: Page 22 of 26
A diagram illustrating the governance structure is shown below: Status: DRAFT Next Review Date: Page 23 of 26
6 Resource 6.1 Programme Budget The majority of resources to implement the programme will largely be drawn from NHS England s national, regional and local area teams. However a dedicated budget will be required to fund the national programme team and programme costs. The cost of dedicated programme management and administrative support is estimated as 500,000 annually. National programme staff costs Programme Director 1 x 9 Programme Manager SPO PO Administrator Sub-total annual staff cost 425 000 National programme non-pay costs Office expenses Meetings and Events Clinical leadership Travel expenses Consultation (standards) External support Expert advice and analysis Sub total non-staffing costs 75 000 NHS England wider team Analyst support Comms and engagement support and advice Finance and commissioning support and advice HR support and advice Workforce and training support and advice 1 x 8B/C 1 x B8A 2 x B7 1 x B5 0.5 x B7 0.2 x B9 0.5 x B7 0.5 x B9 0.2 x B9 0.1 x B9 0.5 x B8A 6.2 Budget control and accounting procedures The programme will follow the standing financial instructions of NHS England, and draw financial accounting support from the finance directorate. Status: DRAFT Next Review Date: Page 24 of 26
6.3 Resource plan A high-level resource plan has been developed based on the project approach outlined above. 7 Management Controls This section defines the controls that will be used to manage the project in accordance with PRINCE2 Project Management Methodology. 7.1 Meetings and reporting Meeting Purpose Frequency Chair NHS England Board Task and Finish Group Clinical Advisory Panel Programme Board Oversee the review, to provide assurance to the board and to provide strategic direction to the programme on behalf of the board. To support the NHS England National Medical Director in obtaining excellent clinical engagement and advice. Support the SRO (Senior Responsible Owner) in managing all aspects of the review s work, taking day to day decisions on the running of the review. Monthly Bi-monthly Monthly Professor Sir Malcolm Grant, NHS England Chair Professor Sir Michael Rawlins, President of the Royal Society of Medicine Bill McCarthy, National Director: Policy and Programme SRO Report Frequency Audience Highlight / Status Report Exception Report Every meeting As required Task and Finish Group and the Programme Board Task and Finish Group and the Programme Board Risk / Issues Every meeting Programme Board Lessons Learnt Programme close Programme Board Status: DRAFT Next Review Date: Page 25 of 26
7.2 Change Control Changes to the content of this PID following approval can only be authorised by the Programme Board / SRO. 7.3 Risks and Issues As an organisation, NHS England is committed to developing and implementing risk management processes that will identify, analyse, evaluate and control the risks that threaten the delivery of key priorities, objectives and values. It is the practice of NHS England that: all risks will be assessed using the agreed risk analysis tool; all risks will be recorded on a standard template; all risks will be assessed on the likelihood of the risk being realised; and all risks will be assessed on the impact of the risk in most circumstances (i.e. what is foreseeable not the worst case scenario). All risks and issues relating to the new review of congenital heart disease will be tracked and managed in accordance with the NHS England risk and issue strategy and policy. The Programme Board will own the review s risks and issues in addition to developing proposals for mitigation / resolution. It will do this by: at each of its meetings, will receive the latest iteration of the programme risk register for consideration this will be a standing item on each agenda; may create a new risk, re-word a current risk, or indeed close a risk during the meeting in addition to updating / revising mitigating actions and both likelihood and impact scores. will escalate any risk(s) to the Board Task and Finish Group should they feel it required; and ensure that programme risks are appropriately reflected in directorate and corporate risk registers. This section should be read in conjunction with Related Documents (see page 4) Risk Register and Issues Log. Following an initial discussion of risks and issues with the programme board at its meeting on 21 October 2013, a full first draft of the risk register and issues log will be presented to the next meeting of the programme board for its consideration. Status: DRAFT Next Review Date: Page 26 of 26