2. Sustainable solutions for improved patient outcomes Ian Mackenzie Consultant in Public Health, Peninsula Cancer Network Tracey Sweet Director of Communications and Corporate Governance, NHS Cornwall & Isles of Scilly 13 th South West Residential School – 20 and 21 October 2009

3. Upper gastro-intestinal cancer UGI Service reconfiguration – the clinical case for change

4. Improving Outcomes Guidance UGI cancer Published in 2001 Surgery to be carried out by specialist teams at a designated location Specialist teams likely to cover a population of 1-2million Minimum of 100 resections a year

5. Where is your oesophagus?

6. What is a resection?

7. Peninsula Cancer Network

8. Cancer Reform Strategy Box 13: Specialist surgery for oesophageal cancer Oesophagectomies (an operation to remove the ‘ food pipe ’ ) and oesophagogastrectomies (to remove both the food pipe and the stomach) are two examples of cancer surgery that are increasingly done by specialists. In 1997/98, 309 surgeons in 147 Trusts carried out these operations. By 2004/05, they were concentrated in the hands of only 188 surgeons in 96 trusts. The impact of this has been significant – the number of patients that died in hospital following one of these operations almost halved in this period (from 9.4% to 4.9%) Although there will be a number of factors that contributed to this, one is specialisation by surgeons and their teams.

9. Surgical intervention reducing

10. Difficult decisions take longer Jan 2001 IOG published and considered by Network site specific group 2002-2003 3 site option proposed, followed by 2 site option (not agreed) – stalemate 2005 Independent review commissioned – go to 2 sites by Dec 2007 and single centre by 2010 Sept 2008 – Independent review RCHT Dec 2008 – Independent review extended to PHT and RD&E

11. Oesophageal cancer 2004-2008 Small numbers are dangerous! Royal Cornwall Hospitals Trust Plymouth NHS Hospital Trust Royal Devon& Exeter Foundation NHS Trust New cases287603490 Resections46163124 The number of cases operated on each year in individual trusts is small. This means that the confidence intervals are wide when considering the small numbers of deaths that occur and comparisons of performance on mortality rates between individual trusts is not appropriate.

12. Anticipated patient flows per year for all UGI cancers - if Plymouth chosen as centre From RD&E UGI UnitFrom Cornwall UGI Unit Total5520 Diagnosis carried out locally Specialist surgery to be carried out at designated specialist centre Local treatment with chemotherapy and radiotherapy

13. What sort of people are affected? Oesophageal and gastric cancer show a social gradient in men (commoner in more deprived) Mainly older people – often retired

14. Group Work - Force Field Analysis What are the forces for and against the centralisation of UGI specialist surgery?

15. Real Involvement Law was strengthened in November 2008 - clearer about when NHS must involve people in planning, developing and delivering health services PCTs have a duty to report on consultations they have undertaken that relate to commissioning decisions Duty covers a range of activities from providing information to large public consultation Duty to involve applies irrespective of whether OSC is consulted New duty to report on consultation Real Involvement (working with people to improve services) is statutory guidance published by the Department of Health in October 2008

16. Principles of local accountability and effective involvement Clear, accessible and transparent Open Inclusive Responsive Sustainable Proactive Focused on improvement

17. Issues for consideration in relation to centralisation of cancer surgery The context (IOGs, World Class Commissioning, Our NHS, Our Future, NHS Constitution, Patient Choice) The givens and what people can influence Who to involve The emotional dimension The political dimension The local context Level of support – clinical and organisational Co-ordinating engagement – PCTs, as members of SCGs, retain responsibility for statutory functions

18. Group Work How would you approach public and patient involvement across the Peninsula?

19. How we approached engagement – a local perspective (1) Phase One (May – July 2008): Publication of public information pack, including scoping paper for health impact assessment Presentation to the OSC meeting by PCN Medical Director setting out clinical case for change Three independently chaired Select Committee style hearings Three public Question Time events, chaired by Regional Director of Public Health, and involving leading Upper GI Surgeons Invitation to write/e-mail directly to the PCT Less than 100 people involved (although many thousands signed a petition)

20. How we approached engagement – a local perspective (2) Commissioning of Independent Clinical Review (September 2008) Phase Two (April 2009) PCT organised focus group with LINk to develop local events focussing on patients and their families/carers Four events planned across county Other opportunities to share views by telephone, email and letter With LINKs input, two letters were forwarded by hospital staff to patients and their family members/carers. 20 patients/carers attended. In addition 1 letter, 3 emails and 3 telephone calls

21. Independent evaluation across the Peninsula To seek the views of the general public on specialist services for treatment of less common cancers as well as patients and carers Procurement of an independent research organisation Involvement of PCTs and lay members in the procurement process

22. MORI - Qualitative Methodology Deliberative events – in five venues with recruited members of the public (100 people in total)

23. Deliberative events

24. Case for change video Making the case for change

25. Qualitative Methodology Deliberative events – in five venues with recruited members of the public (100 people in total) In-depth interviews – hard to reach audiences (11 interviews) – Cancer patients (15 interviews) – Carers of cancer patients (5 interviews)

26. Quantitative Methodology Telephone survey of 1003 people aged 16 and over comprising a representative sample of the Peninsula population and each PCT – Initial views and understanding – Reaction to the case for change – Exploring concerns and how the public would like these to be mitigated

27. Reflecting on experiences Importance of starting with strong and aligned clinical and organisational support (role of independent clinical review) Role of OSCs and timing of proposals Importance of mitigating measures Preparing for impact on individuals involved Taking a social marketing approach – understanding the perspective of patients Balancing duties in relation to clinical governance and involvement Impact of the media/ perceptions of proposals

28. Issues and concerns video

29. MORI Findings Despite media attention only 29% aware and most of those knew little Many misconceptions – Stronger negative feelings expressed in Cornwall Principle – travelling further for better outcomes – supported by >70% (across all PCTs Concerns over travel and accommodation, costs and communication

30. Key Issues Raised During Engagement Travel Accommodation Continuity of care Group Work What mitigating measures could be put in place to assist with successful implementation?

31. Mitigating Measures Proposed – travel, accommodation and continuity of care Capping charges at £20 each way travelled Appointing a further Cancer Nurse Specialist Developing a joint Patient Held Record Case by Case review process Negotiation of discounted weekly rates for accommodation for visitors Local Video Links Flexible Admission and Visiting Times Continuity of Consultant Patient information DVD