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CANCER IN SCOTLAND: ACTION FOR CHANGE - Fifth Monitoring Reports: 1 October 2003 - 31 March 2004

South East Scotland Cancer Network (SCAN)
Fifth Monitoring Report

1 October 2003 to 31 March 2004

Introduction

This is the fifth monitoring report from SCAN, covering the period 1 October 2003 - 31 March 2004.

As with previous reports, it summarises the impact of additional investment in the SCAN region to help implement Cancer in Scotland, as well as reporting progress in the development of SCAN as a cancer network.

1. Investment plans / monitoring

2001-2, 2002-3 and 2003-4 monitoring

Monitoring the patient benefits as well as the financial spend for projects continues, with further help on areas such as financial accountability from Katherine Lodge in Lothian NHS Board finance and from the Scottish Executive. The monitoring process continues to be a significant undertaking, and it has again been a challenge to achieve robust monitoring returns, although now colleagues are used to the monitoring system the data collection has been less problematic.

Steady progress has been made in ensuring detailed benefits for patients are reported for each project, and that SCAN Groups feel ownership of projects and assist with monitoring key regional projects for their cancer type. Monitoring continues to be a consistent feature on Group agendas. Nearly all projects are either 'achieved' or 'in progress - on schedule', although there are still a few which are 'in progress - delayed'. Where delays are reported, there are still a number of projects where clear plans and timescales for how this will be addressed are required. An updated table of projects with delays is included at Appendix 1 highlighting projects which have at some point had 'unfilled posts'. Updated monitoring returns for each project are included in the updated spreadsheet which has been distributed to colleagues and is available from the SCAN Office.

Building on the ongoing monitoring, it was agreed at SCAN RCAG in April 2004 that an audit of the additional benefits gained should be undertaken to ensure the money had been invested in the right areas, and allow it to be reinvested elsewhere if appropriate. Jackie Sansbury has agreed to progress plans for this audit with RCAG's Investment and monitoring sub-group.

2003-4 slippage

Decisions on slippage funding continued to be delegated by RCAG to the 'investment & monitoring subgroup', which includes lead clinicians and planners from all areas in SCAN, plus the SCAN Manager, Cancer Centre Manager and finance support. Given the welcome 'ring-fencing' of monies the subgroup has been able to take a considered approach to investment of slippage monies.

Initial discussion took place on earmarking the estimated ?400k regional slippage for a chemotherapy management system, and further discussion on best use of slippage monies will take place at the next sub-group meeting on 28 ^th June 2004.

General issues

As outlined in the previous monitoring report, a key outcome of the investment process continues to be a strengthening of trust and relationships across the region. By working together to agree process and outcomes relating to sensitive investment decisions, colleagues have built strong foundations for partnership working across the network. It may be that the monitoring process reinforced these relationships as well as bringing in a new sense of accountability for collective decision-making.

Once formally approved, SCAN's investment programme will be available on the Cancer in Scotland website and through www.scan.scot.nhs.uk

2. Regional Cancer Advisory Group

The chair of RCAG, as agreed from the outset, is one the four NHS Board chief executives from the SCAN region, and this rotates on an annual basis. George Brechin from Fife has now taken on the post for 2004.

Standing invitations are also issued for updates from David Cameron (Clinical Lead, Scottish Cancer Research Network, SE Region), St John Hattersley (Head of Service Development, Macmillan Cancer Relief Scotland), and Jill Macintyre (Lead Pharmacist, SCAN). Discussions continue about how palliative care should best feed into and out of RCAG.

Strategic issues discussed at recent meetings have included:

• Regional planning - key discussions about the Next Steps for SCAN in terms of clinical and governance issues, plus particular challenges such as outreach oncology, linear accelerators, new cancer drugs, PET scanning, malignant cord compression, links with voluntary sector etc

• RCAG sub-groups - monitoring and investment of new monies, waiting times

• SCAN Groups - workplans all agreed for 2004-5 and published at www.scan.scot.nhs.uk.

• SCAN Associated Networks (patient involvement, nursing, primary care, palliative care, pharmacy, cancer research, audit, clinical psychology). Particular progress in developing an AHP network following a development day on 19th April 2004; and IT projects such as telemedicine and the SCAN Cancer Information Network

• National issues, communications etc

An up-to-date membership list for the SCAN RCAG is included as Appendix 2. All notes and papers from the SCAN RCAG continue to be openly available on the SCAN website at www.scan.scot.nhs.uk.

3. Cancer network development ('managed clinical networks')

SCAN Groups

An up-to-date list of SCAN Group chairs is included as Appendix 3.

An important part of the role of Kathleen Lowson as SCAN Groups Co-ordinator is to keep an overview of Groups and to facilitate the links between Chairs and Members of different Groups.

Significant progress has been made, with a regular series of meetings agreed for Chairs, Area Lead Clinicians and the SCAN Executive. These take place every two months, in-between SCAN RCAG meetings, to allow Chairs to feed into and out of RCAG meetings. This has been further helped by the representation on RCAG of SCAN Groups through Grahame Howard. Representation of SCAN Groups on RCAG will be further discussed through the SCAN Next Steps process.

As well as representation on RCAG, SCAN Groups also report on progress in a number of other ways. All 9 SCAN Groups published 2004-5 workplans on the SCAN website. In addition, Group Chairs were invited to participate and report on progress in various ways at the SCAN Forum in May 2004. Occasional one-to-one meetings are also held between individual Chairs and the Clinical Director.

All notes, papers, workplans and protocols for SCAN Groups are openly available on the SCAN website at www.scan.scot.nhs.uk . Recent workplans have included more involvement in monitoring Cancer in Scotland funded projects, links to the Scottish Cancer Research Network, and an increased focus on redesign. A specific note has been added to ensure SCAN Groups prioritise work to ensure 2005 waiting times are met.

SCAN as a regional cancer network

The network welcomes recent work on formal accreditation of cancer networks by colleagues at Scottish Executive and NHS Quality Improvement Scotland. During the reporting period standards were proposed by NHS QIS and agreed in conjunction with the Scottish Executive, and a draft Quality Assurance Framework was developed for SCAN, in partnership with the other two regional networks. An accreditation meeting with QIS and the three cancer networks is scheduled for 31st May 2004.

Detail of how SCAN as a network fits with national guidance is detailed in our draft Quality Assurance Framework submitted to NHS QIS. In summary, it is our view is that SCAN meets the 12 core principles in paragraph 8 of MEL (1999)10:

• lead clinician (Anna Gregor), chair (George Brechin) and manager (Oliver Shipp); production of annual report (April 2001, April 2002, April 2003 and now April 2004) [8.1, 12]

• clearly defined structure (published on p2 of our 2004 annual report [8.2],

• a group Co-ordinator (Kathleen Lowson) to ensure consistency of workplans, memberships etc [8.3-4, 8-9, 11],

• cancer patient involvement worker (Sam Held) [8.5],

• development of SCAN Cancer Information Network' (Deb Hamilton) [8.6],

• agreed constitution for all groups [8.7],

• audit manager (Alison Allen) [8.10].

SCAN tries to ensure our successes are recognised and shared, and areas where we can improve are identified and worked on. The independent evaluation of SCAN by Glasgow University aims to outline the development of SCAN, noting significant recent developments in cancer policy and organisation which make this an unusual opportunity to prospectively evaluate the evolution of a managed clinical network and capture and disseminate the learning that emerges. The study complements evaluations of emergent networks for vascular, neurological and coronary heart disease services in Scotland.

A final report is due to be presented to SCAN RCAG in August 2004.

4. Redesign

An agreed part of each SCAN Group's workplan is to promote the redesign of services where appropriate, learning from lessons in other areas and services and supporting initiatives within the SCAN region.

SCAN has welcomed the support of Louise Hamill and Margaret Kelly as 'regional facilitators' who have begun work with SCAN Gyane and Lung Groups respectively. 'Process mapping events' took place during late 2003 and early 2004 as the first stage of service redesign, and a number of change ideas have been identified for each tumour type in each geographical area, with implementation of change now underway. Following agreement at SCAN RCAG, the regional facilitators will continue to support the implementation phase with initial Groups, whilst moving on to start redesign work with SCAN Urology and Colorectal Groups, as well as some support for the SCAN Head & Neck Group.

5. Scottish Cancer Research Network - SE Region

SCAN acknowledged the need to increase recruitment to trials, and fully supported the establishment of the Scottish Cancer Research Network in our region. A budget of ?190,500 was agreed for the region, and a small network team has now been recruited (clinical lead, co-ordinator, lead nurse, 4 research nurses, data manager and administrator). The team are now working towards increasing recruitment into clinical trials. An initial report on progress has been submitted to Scottish Executive, and tailored reports on trials and numbers will be presented to each SCAN Group during 2004.

6. Audit, waiting times

Waiting Times

• Waiting Times data is now being supplied to, and reported on quarterly by, ISD for breast, colorectal, and ovarian cancers, with lung cancer to follow this summer. The aim will be to reduce the timelag to three months (as is already the case with breast cancer). Quality Assurance of breast cancer data shows accuracy rates above 95% in all hospitals. Quality Assurance of colorectal waiting times data is underway.

• Further information on waiting times results for six of the nine cancer groups was reported in the SCAN Waiting Times Action Plan Progress Report, presented by Fionnuala Palmer to SCAN RCAG in April 2004.

• Discussion at April RCAG noted the importance of working towards the 2005 waiting times, and the RCAG Chair (George Brechin) and SCAN Clinical Director (Anna Gregor) have arranged to meet with John Connaghan from the Scottish Executive's waiting times unit to progress this.

Audit Resources

• Funding from the Scottish Executive for audit of Haematological malignancies has been reallocated to networks from the Scotland & Newcastle Lymphoma Group. A post of SCAN Haematology MDM Data Coordinator has been established, and will be filled from May 2004. The post involves helping to develop multidisciplinary meeting processes so that data required to consider patient treatment can also be captured for audit.

• Each network, including SCAN, is to receive a one-off non-recurrent contribution of ?20,000 from ISD to support prospective cancer audit. This will be shared out within the SCAN region, with additional support focussed especially on urological and upper GI cancer audits which are just getting under way.

Reports Available

The following reports are available on request to Alison Allen, SCAN Audit Manager:

Breast Cancer:

ISD Quarterly waiting times report - for Quarter 4 2003, Oct - Dec 2003

ISD QA Report : review of data (whole record) July 2001 - 31 March 2002

Colorectal Cancer:

ISD Quarterly waiting times report - for Quarter 2, 2003 April - June 2003

ISD Quarterly waiting times report - for Quarter 3, 2003 July - September 2003

Lung Cancer:

Reports: Comparative Report on Patients Diagnosed in SCAN hospitals 1 April - 30 Sept 2002. Presented to SCAN Lung Group, 13 Feb 2004

Ovarian Cancer:

Reports: Comparative Report on Patients Diagnosed in SCAN hospitals 1 April 2002- 31 March 2003. Presented to SCAN Gynae Group, 5 March 2004

Skin Cancer:

Report on Baseline Audit of MM and SCC Patients 1 Sept 2002 - 30 November 2002

7. Patient involvement

SCAN has always taken patient involvement very seriously, and this has continued with the work of Sam Held as the SCAN Patient Involvement Worker, in conjunction with Lothian Health Council with support from the Scottish Executive and Macmillan. The post continues to be supported by a steering group which includes chief officer of Lothian Health Council, colleagues from Macmillan, CancerBACUP etc, and the SCAN clinical director, lead nurse, and manager. Sam will be leaving SCAN in August 2004 for a promoted post in East Lothian Council. Agreement was reached quickly to fund and advertise the position, with interviews scheduled for June 2004.

Significant progress has been made in involving patients to date:

• In December 2003 SCAN RCAG endorsed a paper detailing the approach to taking patient involvement forward throughout SCAN

• All SCAN Groups now have active patient involvement in place

• Patients are giving feedback on the SCAN Cancer Information Network and have been submitting their own experiences to a new section of the website

• Funding from NOF is being invested to provide direct training opportunities for patients and practitioners in the SCAN network, and to fund co-ordination of training and development

• The longer-running SCAN Groups are beginning to demonstrate the benefits of patient involvement in the design and delivery of cancer services

In particular, patients have made a significant input to the SCAN Next Steps process, with a separate patient-focussed event followed by full involvement in facilitated workshops in early 2004. This built on the first SCAN Patient Involvement Seminar in February 2004. This patient-led event brought patients and carers together to discuss their priorities for the development of cancer services and their vision for the future of patient involvement in SCAN.

Patient and carer representatives have also been active and valuable participants in a number of qualitative research projects with which SCAN is associated.

The key aims for 2004-5 are expansion of the patient representative base, delivering a series of joint training courses for patients and health professionals, and expanding development opportunities for patient representatives. We are also committed to hosting further patient and carer seminars on themes identified by the participants of the first event. A key message will be to demonstrate that the ongoing process to involve patients is resulting in active and successful involvement, with patient input leading to real changes in cancer services.

8. New Opportunities Fund

Two major SCAN-wide projects were funded from 'NOF phase 2':

• SCAN Cancer Information Network (Deb Hamilton): the network was launched live to the public at the national 'Change & Innovation' conference in Dunblane in October 2003. Content on all 9 SCAN Groups is now live, and the system has now been adopted by NOSCAN and Lothian child protection, and plans are being progressed to share the infrastructure with other managed clinical networks. Plans are in place to move hosting to SHOW, introduce an improved 'look and feel' and to extend the project team until at least June 2005 by converting NOF capital to revenue.

• Telemedicine Project (Tom Gardner): videoconferencing is now becoming a reality, with great progress on procurement and installation of equipment. The SCAN Haematology Group used videoconferencing in their Spring 2004 meeting, and plans are being agreed to make videoconferencing a part of all SCAN Group meetings by the end of 2004.

In addition, the Clinical Oncology System, a LUHT-based project, now has a bronchoscopy screen working, and a plan for further developments. This will link with recent announcements about a national approach to cancer IM&T developments.

NOF 2 slippage monies are also available for patient training and advocacy across the SCAN region (?106,500), and SCAN is also a full partner in the Gold Standards Framework for Scotland which was also recently funded from slippage monies.

NOF 3 also provided money for cancer projects, with bids requested and prioritised locally. A full list of all NOF 3 funded projects is on p33 of the 2003-4 SCAN Annual Report.

9. Communications & events

Open communications are essential to the success of a network like SCAN. SCAN continues to work hard on this, with particular help from part-time Communications Developer, Elspeth Murray.

A key part of Elspeth's role has been to develop a SCAN Communications Strategy. This aims to support the overall aims of the network by incorporating a range of effective communication methods into the work of SCAN. An analysis of current communications practice across SCAN was carried out, looking at how different groups across the network are targeted, highlighting good practice and scope for development. Following feedback from colleagues and communications experts, the following recommendations for action were recommended to SCAN RCAG in October 2003:

• Patient Information - SCAN Groups, with the help of patients and Patient Involvement Worker, ensure that patients and practitioners share relevant information at every appropriate opportunity.

• Updates - Continue the shift from a quarterly paper newsletter to a briefer, more frequent, email-based style of news delivery. Advantages include the ability to: link to specific areas of the website, monitor interest and target news appropriately to specific constituent groupings within SCAN.

• Forums - Organise one main SCAN-wide Forum per year to share overall progress, shape future directions, network with colleagues across the network and encourage one another.

• Network Events - Hold other smaller events for sharing best practice. These events can be focused on particular groupings of colleagues within SCAN and the specific needs of the network as it develops. Also, in response to comments that Forums attract 'the usual suspects', this should help meet the needs of those in the network who may not have attended Forums in the past.

• Outreach - Building on the success of the nursing roadshows, seek opportunities to increase SCAN awareness and involvement among NHS staff and the public.

• Annual Report - Continue to fulfil the statutory requirement to report on progress and investments. We aim to produce a shorter publication with a more readily accessible web component.

• Website - Continue to expand the scope and depth of information available on the SCAN Cancer Information Network in response to user feedback. We aim to increase use of the website, not only in terms of numbers of users, but of the depth of use people make of the resource. Statistical monitoring of use and ongoing user feedback are the key ways of achieving this development.

• Database - Ensure upkeep of SCAN database to maintain smooth and effective communications.

• Management - Use existing management structures and meetings to help raise awareness of everyone's responsibility for consistently clear and relevant communications.

• Skills development - In partnership with relevant groups and organisations, provide dedicated training in practical communication techniques.

• Media - Make proactive use of local, national media for good news stories to share our lessons and to recognise good work.

The SCAN Annual Report 2003-4 was will be distributed widely and available on www.scan.scot.nhs.uk . It will available to all members of Scottish Cancer Group along with this report.

10. Other Local or Regional Issues

SCAN Associated Networks

In addition to the SCAN groups, a number of 'associated networks' have continued to develop.

Reports on the Primary Care, Nursing, Pharmacy, Patient, Audit, Information and Telemedicine and Palliative Care networks are all included in the 2003-4 SCAN Annual Report.

Summary

SCAN has continued to develop rapidly over the period 1 October 2003 - 31 March 2004, and the pace of change and volume of work continues, especially given the SCAN Next Steps process.

A huge amount has been achieved by the committed work of a large number of colleagues in all areas of SCAN, but a lot remains for us to do if we are to be accepted and welcomed as a fundamental part of how the NHS works.

SCAN welcomes external comments on our work, and are keen to link with NHS QIS to ensure speedy accreditation of our network, and with Glasgow University to learn from the outcomes of their independent evaluation of our network which is due to report in August 2004.

Finally, following Oliver Shipp's move to London, SCAN will welcome Jo Bennett as the new

SCAN Manager from September 2004.

Oliver Shipp (Manager, SCAN)

"SCAN has set the pace for care improvement across the country"

"An energetic and coherent implementation of the network's proposals has driven its aim to reduce variations in the quality of cancer treatment in the region"

"The network's strikingly cohesive management has used its sophisticated understanding of healthcare structures to influence developments to the best advantage"

"Real and meaningful patient engagement and strong evaluation of the network's developments underpin its growing success"

(Health Service Journal's 'Best Clinical Network award 2003-4, comments from judging panel).

Appendix 1 - Cancer in Scotland funded project reporting delays (updated May 2004)

All recurring projects noting delays in April 2004 monitoring are listed.

Oliver Shipp, Katherine Lodge - May 2004

Appendix 2 - SCAN RCAG Membership

(From www.scan.scot.nhs.uk , as at May 2004)

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Appendix 3 - SCAN Group Chairs (as at April 2004)

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