The Role of Community Involvement in Planning Hospital Services 1
Total Page：16
File Type：pdf, Size：1020Kb
The role of community involvement in planning hospital services 1 Exploring the Potential for Cross Border Hospital Services in the Irish Border Region The role of community involvement in planning hospital services Ruth Taillon Centre for Cross Border Studies May 2010 The role of community involvement in planning hospital services 2 Table of Contents Page Introduction 1 CHAPTER 1: Health Service Reform in the Republic of Ireland: The Transformation Programme 9 CHAPTER 2: Health Service Reform in Northern Ireland: The Modernisation and Improvement Programme 23 CHAPTER 3: Learning from PPI Theory and Practice in the UK, Europe and Beyond 41 CHAPTER 4: Personal and Public Involvement in Northern Ireland 48 CHAPTER 5: Patient and Public Involvement in the Republic of Ireland 56 CHAPTER 6: Communities’ Experiences of Health Services Reorganisation 65 CHAPTER 7: Communities’ Experiences of Personal and Public Involvement 79 CHAPTER 8: Cross Border Issues 96 CHAPTER 9: Case Study: Cancer Care in the North West 108 CHAPTER 10: Case Study: The Cystic Fibrosis Trust and the Cystic Fibrosis Association of Ireland 125 CHAPTER 1: Case Study: Hospital Campaign for the Rural West 140 CHAPTER 1: Conclusions and Recommendations 173 BIBLIOGRAPHY 179 APPENDIX I: Timeline 184 APPENDIX II: People Consulted 185 APPENDIX III: Members of Research Advisory Group 187 APPENDIX IV: Cross Border Cooperation in the Area of Health 188 APPENDIX V: Co-operation and Working Together (CAWT) 193 APPENDIX VI: Health and Social Care Structures – Northern Ireland 196 APPENDIX VII: Health Service Structures – Republic of Ireland 199 The role of community involvement in planning hospital services 1 Exploring the Potential for Cross-border Hospital Services in the Irish Border Region The role of community involvement in planning hospital services INTRODUCTION The research reported here on the role of community involvement in planning hospital services is one element of a larger study, Exploring the Potential for Cross-border Hospital Services in the Irish Border Region – the aim of which is to ‘identify how cross-border hospital services can provide mutual benefits for the people of the border region’. It follows and builds on two recent CCBS reports – Removing the Barriers: an Initial Report on the Potential for Cross-Border Co-operation in Hospital Services in Ireland (2007) and Surveying the Sickbeds: initial steps towards modelling all- island hospital accessibility (2008). The key focus of the overall project is to support strategic cross-border co-operation for a more prosperous and sustainable region by exploring the potential for cross-border hospital services in the Irish border region. It is one of a package of research projects being undertaken by the Centre for Cross-border Studies under the title – the Ireland Northern Ireland Cross-border Cooperation Observatory INICCO – funded by the European Union INTERREG IVA Programme. The primary output of this overall study, which is scheduled for completion in Spring 2011, will be a robust prototype modelling tool based on patient need (disregarding jurisdictional boundaries). This will be a tool for hospital planning on a border region and all-island basis that can take into account a range of variables such as the geographical distribution of patients; clinical factors for selected specialisms, and the transport network (accessibility based on travel time). Our initial priority is that it can be applied in the context of the Irish border region. It is our hope, however, that this tool could eventually be developed and applied to hospital planning on an all-island basis (and possibly adapted for other cross-border contexts) and additional areas of clinical care. This report presents the findings of the second strand of the project which has concentrated on the impacts of the reorganisation of health services – and specifically the acute hospital sector – on The role of community involvement in planning hospital services 2 people living in the border region. The background to this study is the emergence, alongside the implementation of the reorganisation of the health services, of a number of local campaigns to oppose the downgrading of local acute hospitals. A reflection of the strength of community support for these campaigns has been the success of single issue – save our hospital – candidates in both Monaghan and Tyrone. Paudge Connolly, a psychiatric nurse and trade union activist, was elected to Dáil Éireann in 2002 for the constituency of Cavan Monaghan. (He lost his seat in the 2007 election.) Similarly, as part of the campaign against proposals to transfer services from Tyrone County Hospital (see Chapter 11), local GP Dr Kieran Deeny was elected as a single issue candidate to the Northern Ireland Assembly in 2003. We report here on the experience and views of different groups of patients and service users and communities in trying to influence the decision making process around the reorganisation of acute hospital facilities and service delivery in the border region. This report also explores the attitudes of service users and health service professionals to the delivery of hospital services on a cross border basis. Finally, it offers a number of recommendations for embedding personal/patient and public involvement in planning for the future delivery of acute hospital and related services in the Irish border region. RATIONALE Health service authorities on both sides of the border are committed to a ‘patient-centred’/‘person- centred’ approach that includes engagement of patients, carers and other citizens in the planning and delivery of health and social care services. Within the NHS at UK-level in recent years and in Northern Ireland, there has been considerable discussion and development of policy and practice for the engagement of service users and the wider community. Similarly, in the Republic of Ireland, the commitment to partnership and consultation has been frequently reaffirmed. PPI is acknowledged to be an essential element of health service reform. In the words of one official of the Department of Health and Children, “Organisational change of itself does not generate reform. It is an instrument rather than an end product and needs to be seen in that light. It requires participation to fuel the co-operation required to get results.”1 In both jurisdictions, there PPI strategies accept that patient involvement should occur wherever decisions are being discussed that will affect patients’ healthcare or lives. The International Association of Patients’ Organisations has spelt out that this should include expert committees, 1 Report of National Consultative Forum (2004). The role of community involvement in planning hospital services 3 regulatory processes, facilities design and development (e.g. hospital construction or refurbishment); design of education and training programmes for health professionals; research/clinical trials design; and care and treatment guidelines design.2 In the Republic, the terminology is ‘Patient and Public Involvement’. In the National Health Service, PPI is termed ‘Personal and Public Involvement,’ implying a more active engagement of service users than the patient, who is the perhaps more passive recipient of services. In the Republic, PPI policy for the health services is set out in the National Strategy for Service User Involvement in the Irish Health Service 2008 – 2013.3 In Northern Ireland, the DHSSPS Guidelines on Personal and Public Involvement in Health and Social Care provide the framework under which service user involvement is taking place. Both these documents are discussed in detail in the following chapters. The recent history of a series of community campaigns against the removal or relocation of hospital services, however, reflects a disjuncture between theory and practice. The process of change in recent years has been an unhappy experience for many people who have participated in consultation processes; and also for many service users who have found that the promises for enhanced, more accessible and responsive services – both acute hospital and community and primary care services – have often not been delivered. Some progress has been made and it is important to acknowledge this. Cooperation and Working Together (CAWT) an organisation established in 1992, brings together health authorities in the cross- border region to plan and manage cross-border health and social care activity. It is supported by the two Departments of Health and funded under the European Union Peace and INTERREG Programmes. The CAWT Acute Hospitals Services project is taking forward work to deliver cross- border Vascular and Urology and Ear Nose and Throat services. Previous work has focused on renal care and diabetes. There are also a number of other CAWT projects on areas such as support for older people, diabetes, eating disorders, alcohol harm reduction, genitor-urinary medicine, improved outcomes for children and families; support for people with disabilities; social inclusion and health inequalities; prevention and management of obesity; support for families and children with autism; and cross-border workforce mobility. In Northern Ireland there has been progress in the establishment of the Patient Client Council, and in the Republic, consumer panels have been set up to develop engagement with service users. Most 2 Patient Involvement: Policy Statement, International Alliance of Patients’ Organisations, London, 2005. 3 National Strategy for Service User Involvement