Report to: Paul Watson, Tony Jewell, Medical Director, Essex SHA Director of Clinical Services and Public Health, Norfolk, Suffolk and Cambridgeshire SHA Strategic Plan for Less-Common Cancers in the Mid Anglia Cancer Network Report on Outcome of Informal Consultation From Jennie Fisher, Patient and Public Involvement Manager Essex Strategic Health Authority 13 July 2005 1. Purpose This paper reports the outcome of informal consultation on a Strategic Plan for LessCommon Cancers in the Mid Anglia Cancer Network (MACN). See also attached appendices: 1. Detailed summary of written feedback 2. Summary of open discussion meetings 3. Membership of the consultation reference group Note: Informal consultation provides an opportunity for people who may be directly affected, to be involved in the development of proposals to change services from the start of the planning process. Locally agreed good practice guidelines1 recommend that a discussion document is produced and that discussions and feedback received during the informal consultation process are documented. The recommended period for informal consultation, which precedes the formal consultation process, is one month. 2. Response to the Consultation 103 written responses were received and 80 people attended the three open discussion meetings held in Colchester, Chelmsford and Ipswich during the period of informal consultation. A small number of written responses have been received by the SHAs after the close of the consultation. These responses were received too late to be included in the analysis of the feedback but will inform the next stage of the consultation. Over two-thirds (68) of the written responses were received from Suffolk residents and just over one third (35) were from Essex residents. The category of respondents was fairly evenly divided between patients, public, NHS staff, local authorities and others. 1 Good Practice Guidelines on Consultation Relating to Service Variations and Developments in Health Overview and Scrutiny in Essex, Southend and Thurrock. February 2004 1 52 responses were from individuals and 45 were sent on behalf of organisations or groups. 6 respondents did not state whether or not they represented the views of an individual or of a group. Groups represented ranged in size from 2 to 6000 people (the latter from a local authority). The open discussion sessions in Colchester and Chelmsford were attended by 11 and 12 people respectively who represented patients, public, staff, voluntary sector and partner organisations. 57 people attended the discussion session in Ipswich. A large proportion of those present were patients, carers and members of staff connected with the Head and Neck service provided by Ipswich Hospital, having become concerned by a letter send by a Head and Neck consultant. The following two sections of the report highlight key points raised by people in both the written responses to the consultation and in the three discussion sessions (a full summary is attached at appendices 1 & 2). 3. Summary of Feedback from Written responses See appendix 1 attached for detailed summary of feedback 3.1 Support for Suggested Model: People responding to the informal consultation were divided on the question of which model offers the best strategic plan for MACN and its’ patients: 9 20 54 1 19 3.2 respondents preferred Model 1 (Essex 4 and Suffolk 5) respondents preferred Model 2 (Suffolk 20) respondents preferred Model 3 (Essex 27 and Suffolk 27) respondent suggested an alternative model. respondents did not answer this question directly Identified Benefits / Disadvantages of the Models Many respondents identified a number of general issues which they thought should be taken into account when choosing a strategic model. These included the rural nature of the MACN and concerns about distance of travel for patients and carers, road congestion and parking. Several respondents expressed anxieties about continuity of care and social isolation for patients and the time required to establish specialist centres. Perceived key benefits and disadvantages to each of the models highlighted by respondents further to those identified in the informal discussion document were as follows: Model 1 Opportunities which a new clinical network might bring include providing patients with more choice, a better support structure with more effective clinical links. Travel and transport were identified as both benefits and disadvantages of this model. Other respondents thought that the model might further marginalise patients in rural areas and lead to stress and confusion for patients. 2 Model 2 This model was seen by some respondents to be the least disruptive and the quickest and cheapest to implement as it offered economies of scale and was seen to build on existing services and infrastructure. Other benefits identified were the colocation of clinical services, better regional links and the benefit of increased specialisation with centralised services. However, the model was felt to ignore the outcome of previous consultations, was perceived not to be patient-centred and might be unacceptable to two of the three health economies within MACN. One respondent felt that there would be no contingency if the selected centre failed for any reason (i.e. risk issues associated with patient choice in a more market oriented health service). Model 3 This model was felt to offer a comprehensive and seamless approach and was perceived to build on both the outcome of previous consultations and on the strength of existing clinical services. It was perceived to be the least disruptive model and might assist with recruitment of specialist staff. Disadvantages included the cost of moving resources. Two respondents highlighted the retention of MACN as a disadvantage within this model. 3.3 Preferred Option within Model 3 Of the respondents who expressed a preference for an option within Model 3: 30 chose Option B 15 chose option D 8 chose Option C Other options had minimal support 3.4 Criteria for Choice of Option Of the respondents who answered this question, 37 agreed with the criteria suggested for selecting an option within model 3 and 18 did not. Additional or alternative criteria suggested for selecting an option included: Quality, cost and capacity (assessed by external peer review) Practical ability to implement quickly Co-location of clinical services Proximity arrangements for pre and post operative care Transport and travel times (including impact on ambulance service) Availability of accommodation for carers / relatives of inpatients Risk management, business and continuity arrangements Ability to expand in line with strategic plans Patient flows and ability to respond to patient choice Supports outcome of previous consultations One respondent felt that the criteria should be weighted. 3 3.5 Other comments Many other comments were received as part of the consultation and a detailed summary of these can be found in Appendices 1 & 2 attached. The following highlight views expressed by five or more respondents (figures in brackets represent the number of times a view was expressed) Consider congestion / travel and the need for effective public transport (16) Desire to see specialist services located within local DGH (15) Decisions should be based on clinical rather than political or financial considerations – patient care should be paramount (14) More time needed for consultation (11) Avoid unnecessary change and waste of financial resources (10) Strategic plan needs to incorporate all cancer networks within the SHAs areas (9) Develop these services as quickly as possible (7) Concerns re: geography of MACN (artificial boundaries) (7) Build on existing service strengths (6) Take into account changing demography (6) Importance of co-location of services (6) 4. Summary of Feedback from Open Discussion Meetings 4.1 Key issues raised at the Essex meetings on 10 & 13 June 2005 There was clear support at the Colchester and Chelmsford meetings for the SHAs' preferred Model 3, centres in more than one hospital: (8 out of 11 people and 7 out of 12 people respectively with one person in Chelmsford preferring Model 1) Within Model 3, 5 of the 11 people at the Colchester meeting and 10 of the 12 people at the Chelmsford meeting expressed a preference for Option B. No preferences for any other options were indicated at either meeting. Other key issues raised at the two meetings included: 4.2 The need to ensure seamless care for patients (diagnosis/ surgery/ chemotherapy/ radiotherapy/ outpatients etc) Maintaining accessible, local services in DGHs (to support specialist centres) Ensuring that consultants work together Concerns relating to patients living in rural areas, particularly with regard to access to services and travel implications The greatest need is for more specialization to improve treatments and general clinical care Key issues raised at the Suffolk meeting held on 14 June 2005 In advance of the meeting held in Ipswich on the evening of 14 June, the Communications Department at Essex SHA received two telephone calls, one from a patient and the other from a GP, both of whom lived in Suffolk and both of whom had received letters from a consultant at Ipswich Hospital. The patient, who appeared to be confused and distressed, reported that the letter stated that the SHAs were proposing to close the head and neck service for cancer patients at the hospital in 4 order to build a car park and that a meeting was being held to discuss this on 14 June. This information was sent immediately to the Director of Clinical Services and Public Health at NSC SHA. NSC SHA made direct contact with this patient to address his concerns. Fifty seven people attended the open discussion meeting in Ipswich, the majority of whom were Ipswich hospital managers, clinical staff working in head and neck services and patients of this service, having become concerned by a letter sent by an Ipswich Head and Neck consultant. Key issues raised at the meeting were: 5. Extremely strong support for the head and neck clinical team at Ipswich hospital, particularly the consultant Equally strong support for maintaining all head and neck services at Ipswich hospital Concerns relating to fragmentation of care if all services (including surgery) are not provided by one hospital Questions relating to the rationale for specialist centres and the Improving Outcomes Guidance Concerns relating to access to services, particularly for patients living in rural areas Ongoing Involvement in the Development of the Strategic Plan Several respondents offered ideas on how local people could be involved in developing cancer services in the MACN area. Ideas included utilising the expertise and experience of existing user and carer groups, engaging local community representatives (e.g. local councillors, Patient and Public Involvement Forums), more public discussion sessions and effective publicity via local press, radio and TV as well as posters and flyers in clinical areas. Nine individuals and five organisations indicated in written responses that they would like to be actively involved in these developments. 6. Summary of Process The informal consultation on the development of a strategic plan for less-common cancers in the Mid Anglia Cancer Network (MACN) took place from 20 May to 27 June 2005. A consultation reference group consisting of representatives from the two SHAs, Patient and Public Involvement Forums in Essex and Suffolk and Local Authority Health Overview and Scrutiny Officers from the Essex and Suffolk County Councils is acting as an advisory group for this consultation. Details of membership of this group are provided in Appendix 3. 5 6.1 Publishing A discussion document outlining a proposal for a strategic plan was made available through a cascade distribution mechanism and through both SHA websites. Over 720 copies of the discussion document were sent out initially by post and e-mail from Essex SHA on behalf of the two SHAs. In addition to this, Norfolk, Suffolk and Cambridgeshire SHA sent out copies to NHS Trusts, PCTs and partner organisations in the Suffolk area of MACN. This initial distribution figure is likely to have been increased several fold by the numbers distributed by e-mail, downloaded from the website and copied on via the cascade system. The website sections with the informal consultation document, feedback forms, flyers advertising the informal discussion sessions and booking forms were live from 20 May 2005. There were over 700 visits to this section of the Essex SHA website during the period of consultation. NSC SHA does not record hits on individual pages of the SHAs website. 220 additional hard copies of the discussion document have been requested and distributed during the course of the consultation. NSC SHA sent a further 35 copies of the discussion document to Suffolk-based community organisations. Only one additional copy was requested and sent out to a member of the public from NSC SHA. To support the discussion document, letters and flyers advertising the open discussion sessions were circulated to clinical services within MACN and to NHS Trusts, PCTs, and GP services in Essex. NSC SHA sent the document to Trusts and PCTs to cascade to GP surgeries. Organisations were encouraged to copy the documents and cascade the information as widely as possible, particularly to patients, carers, service user groups, staff and partners and to hold additional discussion sessions with patients and service users as part of the informal consultation. 6.2 Publicity The two SHAs released a joint press release to local press and media at the beginning of the five week consultation process Press coverage during the consultation period included articles in the East Anglian Daily Times, The Ipswich Evening Star, The Essex Chronicle and the Evening Echo (south Essex). An interview with Paul Watson, the Medical Director of Essex SHA was broadcast on Dream 100 FM on 1 June 2005. Fliers advertising the open discussion sessions were sent to GP surgeries in Essex and to MACN leads for distribution in clinical areas. PCTs and Trusts publicised the informal consultation in internal and external newsletters 6 7. Preparing for the Next Stage of Consultation A report on the outcome of the informal consultation will be submitted to the Medical Directors of the two SHAs by Friday 8 July. Recommendations will be made to the two SHA Boards following the outcome of the informal consultation. The consultation reference group will review the process of informal consultation and plan the next stage of the consultation A draft consultation document will be written which takes into account the outcome of the informal consultation process. It is good practice to submit this document to the Health Overview and Scrutiny Committee(s) for their comments on the process. A consultation plan will be agreed The consultation document and plan will be approved by the Strategic Health Authority (ies). 7 Appendix 1 Informal consultation on a strategic plan for less-common cancers in the Mid Anglia Cancer Network (MACN) Detailed Summary of Written Feedback Total number of responses received 103 Of which Feedback forms E-mails Letters 63 10 30 Category of respondents Category of respondent Number of respondents in category Patient / Service User Carer Community / lay representative Member of the public NHS employee Local Authority representative Other 17 2 6 11 20 19 12 Multiple categories completed Not stated 12 4 Responses completed on behalf of organisations Of the total responses: 52 45 6 Were completed as individual responses Were completed on behalf of organisations Respondents did not specify whether they were responding as individuals or on behalf of organisations The feedback form asked respondents who were completing forms to specify how many views were being represented and not how many people were members of the group / organisation. Over half of the responses completed on behalf of organisations did not answer this question directly. These responses were mainly received from Parish Councils, NHS Trusts and PCTs. Other group responses ranged in size from 2 to 6000 (a local authority). A breakdown of the number of people represented in the organisational responses is provided in the table below: 8 Stated number of peoples’ views represented in response Less than 10 10 – 25 26 – 100 101 – 300 301 – 1000 1001 + Not specified Number of respondents 8 6 1 3 1 2 24 Benefits / Disadvantages of Suggested Models Respondents were asked to outline any benefits or disadvantages to any of the three models which were not mentioned in the document. Model 1 Benefits 2 Disadvantages Less travel for Suffolk residents (3) Effective links with clinical services (2) Co-terminus with SHA and county boundaries, research & medical schools More choice Patient centred Better support structure New opportunities for clinical networks (3) Final choice of hospital would depend on evaluation of each on clinical merit (3) Could be achieved quickly; builds on existing infrastructure Cost Least disruptive Centralisation leads to specialisation More compliant with IOG (2) Better regional links Co-terminus with county boundaries Relatively central for patients in Mid Anglia Co-location of clinical and related services Economies of scale Travel and transport (2) Cost Reconfiguration of clinical networks (4) Stress and confusion for patients (2) Costly in time, money and relationships Marginalises patients in rural areas (2) Travel and transport (4) Ignores outcomes of previous consultations Not patient centred (2) Cost (2) No contingency if hospital fails (risk management) Unacceptable to two of the three health economies Decommissioning existing services 9 3 Builds on existing strengths of services (2) Offers comprehensive and seamless approach Assists with recruitment of specialist staff Spreads services and alleviates travel difficulties Least disruptive (2) Beneficial for non-cancer surgery - skills will remain widely available Builds on previous consultations Cost of moving resources (physical and human) to other locations (2) Retention of MACN (2) General Issues which need to be taken into account in considering all 3 models Rurality (2) Distance & Travel (10) Parking (2) Congestion Lack of continuity of treatment Social isolation of patients Geographical spread of MACN Time taken to establish services and learning curves for professionals General Observations Quality, cost and time-frame for implementation (3) Which model offers best solution for achieving IOG? Demographic changes Need to strengthen services in all three hospitals Place services where surgeons have interest and expertise (2) Does not take into account clusters of cancers Concerns about politically driven decisions Don’t break up existing teams Networks should be clinically driven Capacity issues Benefits of co-location Hidden costs to Social Services Preferred Model The feedback form asked which of the three possible models described in the discussion document offered the best strategic plan for MACN and its patients. The following table indicates the number of respondents who expressed a clear preference for one model. 15 respondents either expressed no preference or indicated a preference for more than one model. 10 Model Number of respondents expressing a preference for this model 9 20 54 19 1 Model 1 Model 2 Model 3 Not specified Other The “other” model suggested on behalf of the Suffolk Health Scrutiny Committee was: (a) Existing decisions and facilities stand (Ipswich for gynaecological cancer and Chelmsford for Upper Gastrointestinal cancer) Future (or contended) decisions relating to Urology and Head and Neck cancers should be made in conjunction with adjoining cancer networks. (b) Model Geographical location of respondent Mid Essex North Essex Essex General Suffolk 1 0 10 2 2 0 16 2 1 0 1 0 5 20 27 15 0 13 0 20 0 2 1 68 1 2 3 Not specified Other Total Preferred Option Fifty nine respondents expressed a clear preference for one of the options and three respondents indicated a preference for more than one of the options within Model 3 (sixty two respondents in total) as follows: Option A B C D E F G H I More than one option identified Number of Respondents 1 30 8 15 2 2 0 0 1 3 Reasons for choice of options A Builds on clinical excellence Co-location of clinical services B Cost effective (4) Staff retention (3) 11 Best use of existing faculties (2) Builds on clinical excellence (6) Local access to services All three hospitals in network equal partners (7) Least disruptive to patients (3) Co-location of clinical services (2) Least risk attached to this option More responsive to demographic changes Builds on outcome of previous consultations (4) Offers best service for patients (1) Fits with PCTs strategic plans Reduces travel C Builds on existing clinical services (5) Central location (2) Reduces travel (2) Fairer to patients D Reduces travel (5) Builds on first class services (7) Central geographical location (3) Reduces patient stress Enhances support services Benefit of centralisation Easy access to London Responsive to demographic change Offers best service for patients Co-location of clinical services E Builds on existing services F Best selection of services available Least travel Specialisation of clinical services Maintains Head and Neck surgery at local hospital I Criteria for choosing an option Respondents were asked if they agreed with the suggested criteria for choosing an option. 37 18 48 respondents agreed with the criteria did not agree with the criteria respondents did not address this question Of the 18 respondents who did not agree with the suggested criteria, the following reasons were given Financial criteria did not feature Greater emphasis placed on patient needs Greater drive to increase number of first class services Presentation of options is biased 12 All hospitals should have at least one specialist service Criteria should be based on external measures, both financial and clinical Need to maintain existing services Criteria should be based on what would provide the best possible outcome for patients Access to London facilities for Essex residents Relevance of impact on neighbouring cancer networks Questions about IOG Other criteria suggested for choosing an option included: Quality, cost and capacity Timeframe for implementation Criteria should be weighted Infrastructure, robustness of services and practical ability to implement quickly Financial implications of options External peer review Cost effectiveness Building on existing service strengths Co-location of clinical services Availability of accommodation for carers / relatives of inpatients Transport and travel times Proximity arrangements for pre and post operative care Risk management, business and continuity arrangements Comparative standards of treatment and care Transportation routes to potential surgical centres and impact on ambulance service Rapid implementation Availability of surgeons and nursing staff with appropriate knowledge and skills Ability to expand in line with strategic plans Ability to respond to patient choice Need to consider patient flows Supports outcome of previous consultations Physical facilities available Other comments Consider congestion / travel and need for effective public transport (16) Desire to see specialist services located within local DGH (15) Decisions should be based on clinical rather than political or financial considerations – patient care should be paramount (14) More time needed for consultation (11) Avoid unnecessary change and waste of financial resources (10) Strategic plan needs to incorporate all cancer networks within the SHAs areas (9) Develop these services as quickly as possible (7) Concerns re: geography of MACN (artificial boundaries) (7) Build on existing service strengths (6) 13 Changing demography (6) Importance of co-location of services (6) Need for support for strategic direction for MACN (4) Criticism re: consultation process (open meeting in Ipswich) (5) Rurality (3) Treat the causes of cancer rather than the symptoms - effective screening and detection (3) Need for local expertise, support and follow-up (4) Proposals too prescriptive (4) Importance of ensuring effective patient pathways (3) Importance of carer support (2) Base location of services on outcome of peer review (2) Include pancreatic and blood cancers in strategic plan (2) Need for clinicians to work together (2) Equity for local populations (access to services) (2) Impact on emergency care must be taken into account (2) Infrastructure / facilities available in each hospital Strengthen MACN Evaluate options for head and neck cancer with clear and objective criteria Inconsistencies in timescales for implementing Upper GI and Urology decisions Cancer needs to be part of wider health strategy Impact of patient choice Need to build on outcome of previous consultations Need for independent judgement of options Car parking Need for ownership by all three hospitals of plan Relative costs of models If Models 1 &2 are to be given serious consideration we should not implement another site until we have finished the consultation Increased waiting times for surgery with increased catchment area Specialist units will be too large and impersonal Additional expense of travelling for patients Cancer patients need special care, facilities that are near to hand and accessible Difficulty of co-ordinating appointments Demotivation and relocation difficulties for staff 14 Appendix 2 Informal consultation on a strategic plan for less-common cancers in the Mid Anglia Cancer Network (MACN) Detailed Summary of Feedback from Open Discussion Sessions Level of Support for Suggested Strategy Strong support for suggested model (3) at the Colchester and Chelmsford meetings (8 out of 11 people and 7 out of 12 people respectively with one person in Chelmsford preferring Model 1) 5 of the 11 people at the Colchester meeting and 10 of the 12 people at the Chelmsford meeting expressed a preference for Option B within Model 3. No preferences for any other options were indicated. Preference for a strategic model at the Ipswich meeting was less clear as the discussion centred on the future provision of a specific service (very strong support expressed at this meeting for maintaining head and neck surgery at Ipswich) Model of Care Advantage of co-location of services, particularly aftercare for patients Consider needs of patients with mixed pathology (advantages of crossspecialisation) Consider regional links Must have seamless care if services are spilt between hospitals A centre of excellence is a good model for cities, but may not be appropriate for rural areas Need to think about including haematology and pancreatic services Include patient flows from other areas in formal consultation Cost effectiveness of services need to be included as part of assessment of models Should choose the option that will produce the best outcome for each group of cancer patients Sub-options for Models 1 and 2 need to be included Need to consider geographical incidence of less-common cancers More information needed on outcomes Expectation that surgical centre will cooperate with oncology research Implications of patient choice on each of the models Important to maintain an effective service in DGHs (in addition to specialist centre) Communication issues in potentially fragmented service 15 What Matters to Patients Need to take into account the emotional needs of patients as well as their physical needs Consider patients as a whole not just as statistics Waiting times and quality of service are important to patients Think about the patient pathway and build this into formal consultation Transport / Access to Services Concerns about increased travelling for vulnerable patients Concerns about increased congestion and pollution with additional travel Effect on ambulance services needs to be acknowledged Consider undertaking a transport survey Workforce Development Issues Need to consider effects of decisions on existing units (and staff) Knowledge and skills of staff are more important than travel considerations Need to build on existing (clinical) strengths Investment in services will help to increase expertise Specialisation will help to attract and retain qualified staff Consultants need to agree the model and work together for the sake of patients Need to maintain local surgeon’s expertise and level of interest as well as staff in specialist centre Need to listen to clinicians Importance of multi-disciplinary team working Infrastructure / capacity issues Are there sufficient beds to provide the specialist surgery Effect of changing demography Capacity of the three hospitals to undertake research and development Clinical Networks The mixture of rural and urban areas within MACN presents a challenge in choosing the right model Artificial geography of MACN (cross boundary working) Would be helpful to know how other clinical networks have developed strategies Implications for neighbouring cancer networks of each of the models Process of consultation Concerns about transparency in choice of preferred option Importance of listening to people 16 Scepticism about the process of consultation Need to build on outcome of previous consultations Concerns re lack of detailed information on which to make decisions Need to effectively publicise public meetings Importance of open meetings in formal consultation process Decision making process needs to be transparent General Comments Need to be clear about drivers for change Questions about the Improving Outcomes Guidance Formal consultation must contain financial detail Concerns about delays in implementing some of the options Very strong support within Suffolk for Ipswich hospital 17 Appendix 3 Informal consultation on a strategic plan for less-common cancers in the Mid Anglia Cancer Network (MACN) Membership of Consultation Reference Group Andy Ball Member, Suffolk Coastal PPI Forum Ashok Bhatt Member, Ipswich PCT PPI Forum Jennie Fisher PPI Manager, Essex Strategic Health Authority Denise Gale Network Director, MACN Catherine Hodson Governance Officer, Essex County Council/Essex HOSC Meg Horne-Ceriani Member, Colchester Community PPI Forum Malcolm Jacobs Chair, Chelmsford PPI Forum Sue Kennedy NSF Manager (Cancer) Norfolk Suffolk & Cambridgeshire SHA Deborah Knight Head of Clinical Services, Norfolk Suffolk & Cambridgeshire SHA Sue Morgan Scrutiny Officer, Suffolk County Council 18
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