The Scottish Government

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CANCER IN SCOTLAND ACTION FOR CHANGE
ANNUAL REPORT 2003

CARE • PREVENTION • DETECTION • TREATMENT

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CONTENTS

FOREWORD - REPORT TO THE CHIEF MEDICAL OFFICER
01 WHERE ARE WE NOW
02 PREVENTING CANCER
03 DETECTING AND TREATING CANCER EARLY
04 RAPID ACCESS TO DIAGNOSIS AND TREATMENT
05 IMPROVING CANCER TREATMENT AND CARE
06 PALLIATIVE CARE
07 INVESTING IN OUR STAFF AND IN TECHNOLOGY
08 SUPPORTING RESEARCH AND DEVELOPMENT
09 MAKING IT HAPPEN
POLICIES AND DOCUMENTS

FOREWORD
REPORT TO THE CHIEF MEDICAL OFFICER

Report of the Scottish Cancer Group on the implementation of Cancer in Scotland: Action for Change

To Dr E M Armstrong
Chief Medical Officer

In the 2 years since the launch of Cancer in Scotland: Action for Change there have been considerable changes in the way that Scotland thinks about, plans and manages cancer services. Giving the responsibility to decide on how and where to invest the additional money to the three regional cancer networks has helped to bring together teams of people involved in and responsible for the provision of cancer services in defined geographical areas.

The transparency and accountability of the process means that the three regional cancer networks are building ongoing partnerships which can start addressing the needs and wishes of cancer patients in their area.

Money has been channelled into areas where there were known gaps in provision or access and where investment could make a real difference in improving the quality of care delivered. Ring fencing of the 25 million recurring investment has undoubtedly contributed to the success of the programme. It has always been planned to subsume this funding within the allocations to NHS Boards and this will happen next financial year. Recognition of the effectiveness of the process so far has enabled us to continue the ring fencing of this investment for at least the next two years. This will provide the networks, together with their Regional Cancer Advisory Groups, with an opportunity to review areas where planned investment has not been taken up due to lack of available manpower and consider alternative ways of providing the necessary services.

NHSScotland can celebrate some real achievements in reducing waiting times, improving access and enhancing capacity. Examples of these improvements can be found in the six monthly progress reports published on the Cancer in Scotland website and a few are mentioned throughout this report although these are by no means exhaustive.

This would not have been possible without the committed efforts of large numbers of staff, which will ensure continuing progress and future improvements. Challenges remain, including IM&T and getting patient and public involvement right. But I believe that with the continued enthusiasm and broad based support that is the hallmark of this implementation programme we will see more sustained improvements in the years ahead. I commend this report to you.

DR ANNA GREGOR
Chair
Scottish Cancer Group

01. CANCER IN SCOTLAND - WHERE ARE WE NOW

Survival from Cancer

Cancer in Scotland: Action for Change highlighted that while the incidence of cancer is increasing, fewer Scots under the age of 75 are dying from it. More people living with cancer means more services are required in all care sectors. These predicted rises are not unique to Scotland. The recent World Health Organisation report projects that cancer will rise by 50% by 2020. Although the steepest rises are likely to be in developing countries there is no doubt that Scotland can expect to see increases year on year.

In 1999, the Scottish Executive committed to a 20% reduction in deaths from cancer in the under 75s by 2010. We are on track to achieve that but there is some way to go. In 2002 there were 150.6 deaths from cancer per 100,000 of population, which is an improvement of 10.4% on the 1995 baseline.

Additional Investment

An additional 60 million has now been distributed throughout NHSScotland to support implementation of Cancer in Scotland. The Scottish Cancer Group is working with all three Regional Cancer Advisory Groups to ensure that this money is being used for the greatest possible benefit for patients. A breakdown of the funding is illustrated below.

Distribution of 60m across Scotland during
2001 to 2004

This additional investment has secured at least 330 extra staff including doctors, nurses, radiographers, pharmacists and almost 13 million targeted to vital equipment for diagnosis and treatment, bringing significant improvements in standards of care and more rapid diagnosis and treatment.

Partnership for Care

Cancer has been at the forefront in the development of managed clinical networks and regional planning. The recently published White Paper Partnership for Care reinforces the importance of managed clinical networks in developing integrated care. It recognises that "The cancer MCNs have shown that patients welcome the development of clearly defined pathways of care, which reduce delays and duplications and tackle bottle necks. They also lead to clearer information for patients and carers."

Partnership for Care also emphasised the need to drive forward regional planning. Each NHS Board now has a formal duty to participate in regional planning groups and cross-Board managed clinical networks. The three Regional Cancer Advisory Groups (North, South East and West of Scotland) are cited as an example of "..partnership working and collaboration..". They are the regional planning mechanism for cancer and related services working with NHS Boards to develop local health plans and future investment in cancer services.

The move towards the dissolution of Trusts should support the development of integrated decentralised services that meet the needs of individual patients and local communities.

Regional cancer networks look forward to sharing their experiences of regional working and continuing to make a practical contribution to improvements in coordination and integration of complex clinical services.

02. PREVENTING CANCER

Scotland's health is improving but not fast enough. Major health inequalities persist in our society. Improving Health in Scotland - The Challenge published in March 2003 provides a strategic framework to support the processes required to deliver a more rapid rate of health improvement.

Smoking

Smoking is the single greatest cause of ill health and accounts for more than 13,000 deaths. Each year more than 35,000 people are admitted to hospital with smoking-related diseases at an estimated cost of 200 million.

The Scottish Executive is investing considerable efforts in helping people stop smoking and helping young people not to start. Earlier this year Partnership Action on Tobacco and Health announced funding of nearly 900,000 for ten new initiatives designed to support smokers throughout Scotland to give up smoking. The initiatives range from work with smokers with suspected oral cancer, to investigations of how easy it is for older people to get stop smoking support, and projects which combine quitting smoking with exercise to improve all aspects of health. It is hoped that this work will help increase the total of 13,000 smokers who quit in Scotland each year.

The latest figures suggest that smoking levels amongst adult Scots have dropped from 35% to 31%. While it appears that the target to reduce smoking in adults by 4% has already been met it is too early to say if this trend will be maintained.

In addition, a landmark piece of public health legislation, the Tobacco Advertising and Promotion Act received Royal Assent in November 2002. The Act bans press and billboard advertising and sponsorship; restricts internet/point of sale advertising; and prohibits the promotion of tobacco products through free gifts coupons and mailshots. It came into effect in February 2003.

Scotland's Health Challenge gave a commitment to review tobacco control policy with key interests and set out a new plan for action which will build on achievements to date. Consequently the Scottish Executive has commissioned NHS Health Scotland and ASH (Scotland) to undertake a wide ranging review of tobacco control policy and make recommendations about what further action should be taken in Scotland. The resultant joint report and the Scottish Executive Tobacco Control Action Plan are expected to be published in autumn 2003.

Diet

After smoking, poor diet is the most significant contributor to poor health in Scotland, perhaps responsible for between 30-40% of cancer deaths.

The Scottish Diet Action Plan is now being taken forward through a food chain based approach which involves all aspects of the food chain from consumers, caterers, manufacturers, processors and retailers through to primary producers.

The healthyliving campaign was launched in January 2003. The largest public health education campaign ever undertaken in Scotland, it is a long-term campaign that aims to encourage and sustain a cultural shift in attitudes towards healthier eating over a number of years.

Evaluation findings for January to March show that, at 84%, public awareness of the healthyliving campaign TV advertising and its healthy eating message is high.

Public sector catering has a major responsibility in this area and the Scottish Executive's biggest recent achievement has been the development of nutritional standards for school meals. The final report of the Expert Panel on School Meals, "Hungry for Success" was published in February 2003 and sets out recommendations to improve the appeal of school meals and eliminate the stigma associated with free school meals while maximising their uptake. Implementation of 'Hungry for Success' will be taken forward in the context of a whole school approach.

In February 2003, the Scottish Executive announced that free fruit would be provided in school to all primary 1 and 2 pupils. A 300,000 breakfast services fund has been made available to Local Authorities for development of existing breakfast clubs or to help set up new schemes.

Physical Activity

The Scottish Executive has also set challenging targets for increasing physical activity levels across the whole population. Scotland's national physical activity strategy Let's Make Scotland More Active was launched in February 2003 and the goal is for 50% of adults and 80% of all children to meet the minimum recommended levels of physical activity for health by 2022.

The National Physical Activity Co-ordinator is developing partnerships with local and national organisations to help secure sustainable improvement and effect changes in attitudes and lifestyles. Five-year action plans for active homes, active communities, active schools and active workplaces will be developed during 2003-4 to take forward the implementation of the Strategy recommendations. Physical Activity is one of the special focus programmes within the Health Challenge and these plans will support and advance its agenda of improving the health of all the people of Scotland and narrowing the health opportunity gap.

Alcohol Consumption

Potentially, one of the most important developments in the last year has been the confirmation of the association between alcohol consumption and risk of developing breast cancer, highlighted in the Chief Medical Officer's Annual Report 2002. Previous studies have suggested a dose dependent relationship and a meta-analysis published in 2002 reviewed fifty three studies involving more than 58,000 breast cancer patents and 95,000 controls.

The nature of these studies precludes any effect yet from the recently documented increase in drinking amongst, in particular, young women - the so-called "binge-drinking" phenomenon. Although breast cancer is currently very rare in young women, these studies suggested that a young woman who makes a habit of binge drinking is building up a significant breast cancer risk in twenty to thirty years' time. These findings have been reflected in the recently revised European Code Against Cancer and are another compelling reason to step up effort against habitual binge drinking.

Local Alcohol Action Teams submitted 3 year action plans to the Scottish Executive in March 2003. The plans detail current activity and planned action to meet the prevention, education and treatment needs of local communities.

The Nicholson Committee's review of licensing law has been published and is out for consultation until the end of 2003. The review includes 90 recommendations for reform including the introduction of a wide range of sanctions to be used by local licensing boards and a crackdown on advertising, promotion and price discounting that might encourage binge drinking.

Chemoprevention

To look at the current position and the issues surrounding chemoprevention, a range of national and international experts presented to a targeted audience at the first Chemoprevention Seminar in October 2002. This provided an opportunity to hear about wide ranging approaches to chemoprevention in colorectal, breast and prostate cancer and demonstrated ongoing national and international work and evidence.

A summary and recommendations from the seminar have been reported to the Scottish Cancer Group and a copy of this is available on the Cancer in Scotland website.

03. DETECTING AND TREATING CANCER EARLY

The new European Code Against Cancer calls for nationally organised programmes of screening for breast, cervical and colorectal cancer. In Scotland there are long established and robust national programmes for breast and cervical screening and the past year has seen the commencement of further developments with both of them.

Cervical Cancer Screening

A Project Manager has been appointed to oversee the roll-out of Liquid Based Cytology (LBC), an alternative method of smear taking, across Scotland. A phased programme of training for laboratory staff and smear takers began in March 2003. It is expected that LBC will be fully introduced across Scotland by spring 2004. The first LBC newsletter was issued to NHSScotland in July 2003 and will be followed by regular updates.

Implementation of a new national call-recall system will be phased in and should be fully implemented by 2006. As a first step user acceptance testing of call-recall functionality began in June 2003.

Breast Cancer Screening

The extension of the upper age range to 70 years for routine invitation for breast screening is being introduced across Scotland over a three year round of screening. This began in April 2003. Women over the age of 70 are able to continue to self-refer for screening.

Colorectal Cancer Screening Pilot

Cancer in Scotland committed that plans would be made to introduce a national colorectal screening programme subject to the successful outcome of the UK Colorectal Screening Pilot and recommendation from the UK National Screening Committee. The Evaluation Report on the Colorectal Cancer Screening Pilot was published in July 2003. It confirmed the potential benefits of colorectal cancer screening and that Faecal Occult Blood (FOB) testing was feasible in an NHS setting.

The report identified a number of areas where further work is needed such as the impact on primary and secondary care services and workforce and training requirements. In addition, while the pilot was based on FOB testing there are a few other screening methodologies available such as flexible sigmoidoscopy. These issues are being considered and the process of planning for the introduction of a national screening programme has started, however, it is expected that this will take up to 5 years. The UK National Screening Committee will be considering the Evaluation Report and their advice will be taken into account as part of the planning work.

Prostate Cancer

In light of the Prostate Cancer Working Group Report (2001), Regional Cancer Advisory Groups were asked to report on their proposals to take forward prostate cancer services. Many of the recommendations from the report have already been or are being embraced by the cancer networks, for example:

• The Guidance issued by the Chief Medical Officer on Prostate Specific Antigen (PSA) testing for Prostate Cancer and the subsequent Prostate Cancer Risk Management Primary Care Resource Packs have been taken on board.

• Evidence based protocols for investigation of patients with raised PSA and treatment of patients with confirmed prostatic cancer already exist or are being developed.

• Prostate Brachytherapy treatment is provided nationally through facilities in Edinburgh and Glasgow.

• Through Cancer in Scotland investment a dedicated, regional trans-rectal ultrasound (TRUS) and biopsy service is currently under development for South East of Scotland. This is designed to streamline the diagnostic process, fast track patients suspected of having prostate cancer and cut waiting times. A similar dedicated service is available in Forth Valley (West of Scotland) with twice weekly sessions led by specialist nursing staff. In the North of Scotland a nurse post established through Cancer in Scotland investment supports the service in Aberdeen.

• Service provision in the South East of Scotland will be greatly enhanced by the HEBA Centre - new male cancer within the Edinburgh Cancer Centre. It acts as a focus for education, training and support as well as clinical activities.

Prostate and urology cancer services in general have benefited from over 700,000 Cancer in Scotland funding during 2001-04 providing biopsy and brachytherapy services, equipment such as ultrasound, cystoscopes, specialist nursing and quality assurance of services.

Prostate Cancer Advisory Group (Department of Health, England)

A Prostate Cancer Charter for Action was launched in the House of Commons in January 2003 to ensure collaboration and communication between Charter members and government. The Department of Health announced simultaneously the establishment of a Prostate Cancer Advisory Group. Group membership includes Scottish Executive officials, voluntary sector, professionals and patients.

Reports from the Group will be made available to the Scottish Cancer Group in order to consider implications for Scotland and agree any subsequent action required.

Oral Cancers

Originally launched in 2000, an Oral Cancer training package developed by Glasgow University Dental School and the predecessors to NHS Education for Scotland and NHS Health Scotland (Scottish Council for Postgraduate Medical and Dental Education and Health Education Board for Scotland) has recently been updated. It will be sent out to pharmacies, general practices and dental surgeries in October 2003. The revision follows on from a tracking exercise, which indicated the pack led to positive changes in practice, particularly by professionals trained over 10 years ago. A small study looking at referrals in one area in the years both before and after an increase in training is due to report shortly.

The West of Scotland Cancer Awareness Project (WOSCAP), a partnership between the five West of Scotland NHS Boards, is funded by the New Opportunities Fund (NOF) with a remit to develop a high profile public awareness campaign on the early detection of mouth and bowel cancer. This is the biggest NOF cancer project in Scotland and will run from June 2002-June 2005, with a budget of 1.3million. The mouth cancer campaign will commence in October 2003 through to March 2004.

04. RAPID ACCESS TO DIAGNOSIS AND TREATMENT

Referral

Implementation of the Scottish Referral Guidelines for Suspected Cancer continues.

• In South East Scotland this is being taken forward through the various tumour specific groups. Progress has also been made with an electronic referral pathway for breast cancer now in place in Lothian. It is hoped to roll this out across SCAN as soon as information technology allows.

• In the West of Scotland all NHS Boards have started to implement the guidance. This has included formal investment as well as adapting existing structures. Work is ongoing to ensure that both primary care and secondary care are fully engaged and in agreement about the symptoms to trigger urgent referral. In Forth Valley a colorectal protocol is being piloted - six general practices are using a paper based version and six an electronic version.

Implementation is also being taken forward through the National Cancer IM&T Project Board. The guidelines are being used as the basis for a national IT facility for providing referral guidance and protocol-based referral through the SCI Gateway (a component of Scottish Care Information (SCI) to enable secure transmission of referral/discharge information).

Waiting Times

Once cancer is diagnosed most patients do not wait long for treatment, but improvements still need to be made to meet the national targets.

Breast Cancer Target

• By October 2001, women who have breast cancer and are referred for urgent treatment will begin that treatment within one month of diagnosis, where clinically appropriate.

The most recent quarterly report (June 2003) shows that, nationally, 85% of women who have breast cancer and are referred for urgent treatment begin that treatment within one month of diagnosis, where clinically appropriate.

The target is challenging and through the additional support provided by the Cancer Service Improvement Programme (page 12) and general streamlining of services it is hoped that further improvements in performance will be seen in the coming year.

All Cancers Target

• By 2005, the maximum wait from urgent referral to treatment for all cancers will be two months.

Regional cancer networks and NHS Boards have been asked to report on their plans to achieve this target and work is also ongoing to ensure robust data collection and monitoring of the target.

Diagnostic Services

A substantial proportion of the Cancer in Scotland investment, almost 22 million, is targeted at staffing and equipment to enhance diagnostic services such as radiologists, pathologists, Magnetic Resonance Imaging (MRI) and Computerised Tomography (CT) scanners, endoscopy equipment, which means that more patients can be seen and diagnosed quicker. Examples of improvements include:

• In Highland new video endoscopy equipment has been used in over 2600 procedures resulting in improved safety and quality of image as well as enabling more patients to be seen locally.

• Additional CT sessions in Edinburgh have reduced average waiting times from 30 to 19 days at the Western General Hospital and from 27 to 12 days at the Royal Infirmary.

• An additional haematologist and nursing support in Argyll and Clyde means that over 600 additional patients have been in the first year of the new day treatment centre, which equates to a 40% increase in activity.

Imaging Technology

In October 2002, the then Health Technology Board for Scotland (now NHS Quality Improvement Scotland (NHS QIS)) published a Health Technology Assessment on positron emission tomography (PET) imaging in cancer management which recommended that a PET imaging facility should be established in Scotland.
A Working Group was set up to consider implementation and make recommendations to Ministers. In March 2003 the Minister for Health and Community Care announced 5 million capital funding from 2004-05 to support the programme. The Group's report is being finalised for consideration by the Scottish Executive Health Department Management Board in the first instance. It is expected that this along with guidance for NHSScotland will be published during autumn 2003.

Radiography

150,000 is available to support projects to enable role development and skills enhancement for diagnostic and therapeutic radiographers and their support staff. Advice from NHSScotland and the professions confirmed that the best use for this funding would be a collaborative Scotland-wide approach to education and training to support all levels of practice.

A short term scoping exercise will therefore be undertaken to establish the current position across Scotland in terms of skill mix and role development.
It is hoped, in due course, that recommendations for a national framework for education and training for this group of staff will be produced in collaboration with NHSScotland, and professional and educational bodies.

Treatment

Against a background of significant projected increases in the incidence of cancer in Scotland in the period up to 2010-14 the Minister for Health and Community Care ordered a fast-track review of radiotherapy activity pathways. A Radiotherapy Activity Planning short-life sub-group carried this out. Statistical and geographical modelling was undertaken using a Geographical Information System (GIS) to analyse the implications of current provision, future demand and possible locations of radiotherapy services for patient journey times. The Group's report was considered by the Health Department Management Board in June 2003 when it was agreed that a detailed option appraisal should be carried out involving economic and further statistical input/modelling to assess the available options to meet the projected level of need by 2010-2014.

05. IMPROVING CANCER TREATMENT AND CARE

Improving Quality

The Scottish Cancer Group's Quality Improvement Sub-Group has a strategic role in the continuing development of cancer services quality improvement in collaboration with NHS Quality Improvement for Scotland (NHS QIS). In particular the:

• need for cancer networks to undertake routine self assessment against existing cancer services standards (breast, colorectal, lung and ovarian), as reiterated in NHS HDL(2001)71

• availability of (Clinical Standards Board for Scotland (CSBS)) NHS Quality Improvement Scotland generic standards against which all services can be self assessed

• overarching 2005 waiting times target (two months from urgent referral to treatment for all cancers)

• need for clinical audit to support quality improvement/clinical governance of cancer services

• continuing development of tumour specific managed clinical networks

Together with NHS QIS and the regional cancer networks, a Quality Improvement Framework for Cancer Services is being developed.

Cancer Networks Development Programme

To support the development of networks, national tumour specific learning days were held throughout the year. So far there have been workshops for primary care (page 16) breast, colorectal and gynaecological cancers which attracted participation from a wide range of staff from NHSScotland in the primary, secondary and tertiary care settings.

Further workshops are planned in November 2003 for lung cancer and in early 2004 for upper GI and urological cancers. Summaries of past workshops and details of future events are being made available on the Cancer in Scotland website.

Cancer Service Improvement Programme (CSIP)

Service redesign is an important feature of implementation of Cancer in Scotland. In October 2002 the Minister for Health and Community Care announced an additional 1 million investment over 3 years to underpin the redesign of cancer services. The Cancer Service Improvement Programme (CSIP) aims to accelerate the pace of change and bring improvements to existing systems and processes across the three regional cancer networks.

The programme aims to improve experiences and outcomes for patients with suspected or diagnosed cancer, consistent with the goals set out in Cancer in Scotland. Patients' and carers' needs are the focus of the CSIP.

Regional Facilitators for CSIP have been in post since June 2003 and are working closely with clinical leads within the regional cancer networks. Established tools and techniques are being used to support regional cancer networks in achieving the goals as set out in Cancer in Scotland. Support is in the form of practical on-site facilitation, coaching and guidance to facilitate effective redesign.

Each regional facilitator has begun to map out the many steps across the patient journey from referral, through to diagnosis and subsequent treatment. The target date for completion of this first phase of the programme is the end of December 2003.

Initially support is being provided to lung, colorectal and gynaecological cancer services. These are three of the most commonly occurring tumours for which CSBS (NHS QIS) reports confirmed the need for improvements in the delivery of care. Regional support is being provided as follows:

North of Scotland (NOSCAN)
Lung and Colorectal

South East of Scotland (SCAN)
Lung and Gynaecological

West of Scotland (WOSCAN)
Lung, Gynaecological and Colorectal

There is a direct link between the work of the CSIP and patient involvement within cancer networks. To avoid duplication, facilitators will liaise with patient involvement workers in each of the regions. Interview techniques will be used to listen to patients' and carers' stories about their journey(s) through their pathway of care. These will be used to make decisions on actions to be taken that will add benefits for patients and their carers.

West of Scotland Cancer Centre (Beatson Oncology Centre)

As the past difficulties at the Beatson Oncology Centre in Glasgow have been well aired previously it would be wrong not to highlight some of the significant improvements that have been made. The Minister for Health and Community Care has visited three times and the First Minister visited the Centre in August 2003 to see at first hand the progress that has been made over the last year.

In June 2003, Professor Alan Rodger was recruited from Melbourne, Australia to take up post as Medical Director of the West of Scotland Cancer Centre.

2 million of the Cancer in Scotland investment is being targeted at equipment and staffing with more than 100 more posts filled. Some improvements from the investments include:

• Additional radiographers provide dedicated input to the breast team improving the quality of care for patients.

• The appointment of an additional 35 nurses has resulted in improved quality of patients care, enabled the release of staff for training and reduced the need for agency staff.

A new day case chemotherapy centre has been established at Gartnavel Hospital in Glasgow and is showing a huge benefit for patients as well as relieving pressure at the Western Infirmary site. In future capacity will rise so that more than 70 patients can be treated every day.

Efforts to recruit Consultant Oncologists and Therapy Radiographers continue against a background of recognised UK and worldwide shortages. However, all of the recent Therapy Radiographer graduates from Glasgow Caledonian University have been appointed to posts in the Centre. Further interviews have also been held for Consultant Oncologist posts and it is hoped to confirm appointments in the near future.

Professor Rodger is working with the staff of the West of Scotland Cancer Centre and across all five Health Boards to plan and develop the best services possible for the future and to position it as one of the leading cancer centres in the world.

06. PALLIATIVE CARE

Over 5 million has been invested in palliative care services over the last 21/2 years. Examples of some of the improvements from this investment include:

• Four nurses in Highland have undertaken training to become palliative care key workers. This enhances palliative care skills within the primary care team and enables access to palliative care by a wider range of patients.

• In Fife an additional consultant in palliative medicine has resulted in over 75% of patients being seen within 2 days and at present urgent referrals on the same day. This service is complemented by a bereavement counsellor who, as well as being able to see urgent referrals the same or next day, has introduced bereavement support groups.

• Since August 2002 over 60 patients and their families have benefited from a new primary care crisis response team in Ayrshire and Arran. Most patients who have received this service have avoided hospital admission during their terminal stage of illness, enabling them to die at home.

Gold Standards Framework (GSF)

In May 2003 the New Opportunities Fund (NOF) made an award of 640,000 to support the development of the Gold Standards Framework in Scotland.

GSF is being used in general practices throughout the UK, to improve the care of individuals requiring palliative care in the community. In Scotland the project is being modified to address the needs of all cancer patients from the point of diagnosis onwards. The aim of the Framework is to provide primary health care teams with an effective method of empowering patients and improving the hands on care they receive during their illness. This joined-up approach is designed to ensure that no Scottish cancer patients 'fall through any cracks' and each patient's individual needs and wishes are addressed. The principles underpinning the Scottish development remain identical to those of the wider GSF project and there is continued emphasis on the provision of high quality palliative care. The most significant difference is that practices are encouraged to maintain a cancer register as well as a palliative care register in order to ensure that all cancer patients are appropriately supported at key points in their cancer journeys.

Integration of Planning and Delivery of Services

Cancer in Scotland tasked all NHS Boards to undertake local palliative care needs assessments. To some extent this commitment has been actioned by the development of palliative care networks but most Boards have either undertaken or are in the process of undertaking a needs assessment. In some areas, as reported in Local Health Plans, this has been used to develop a local Palliative Care Strategy now being implemented, for example:

• Shetland produced an updated strategy in 2002, which outlines the key elements of service delivery and their plans for the development of services locally.

• In Lothian Palliative Care Managed Clinical Networks have been established and with the NHS Board have undertaken and completed a needs assessment. The outcomes of that assessment informed prioritisation of investment and development.

• In Lanarkshire the Palliative Care Strategy is being revised and updated and will be available later in 2003 to support planning and development of services. A Palliative Care Cancer Network has been established to provide a focus for the continued development of palliative care services based on evidence and the needs of patients.

Standards for Palliative Care

Standards for specialist palliative care were developed and published by NHS QIS in June 2002. The peer review process took place during the early part of 2003 and the national overview report is expected to be published in early 2004.

07. INVESTING IN OUR STAFF AND IN TECHNOLOGY

Primary Care

Primary care involvement is encouraged within all networks and is not seen as a separate exercise. However, it was agreed that there was some value in holding a primary care workshop but with an emphasis on networking and links through secondary and tertiary care and the community.

The Cancer Networks - A Focus on Primary Care conference was held in March 2003 with 160 delegates from around Scotland including staff from primary, secondary and tertiary care settings. The conference aimed to further enhance the development of the cancer networks focusing on the involvement of the Primary Health Care Team as an integral part in the future development of cancer services in Scotland.

Some of the challenges highlighted were:

• resources for inclusion of primary care;

• representation - who and how;

• how do we get evidence about good practice and disseminate it;

• issues around working together - trust, partnerships, boundaries, ownership.

It was hoped that the Partnership for Care and the new GMS contract would assist in overcoming some of these challenges. However, to resolve the issues locally and regionally, much remains to be driven by networks themselves.

Nursing Care

The Cancer Nursing Sub Group of the Scottish Cancer Group, chaired by Chief Nursing Officer, Miss Anne Jarvie, met for the first time in January 2003. The Group's remit is to provide leadership and a clear direction for Cancer Nursing in Scotland by establishing a Framework for Nursing People with Cancer, linking across to support the aims and objectives within the National Cancer Nursing Co-ordinator post and thereby contributing to the implementation of Cancer in Scotland.

Consultation with nurses about the possible content has been conducted through a series of four national conferences held between November 2002 and August 2003.

Two Best Practice Statements: Pain Management of People with Cancer and Skincare for Patients Receiving Radiotherapy have been the subject of consultation and comment prior to publication which is planned for late 2003.

Pharmaceutical Care

Ongoing investment in pharmacy and chemotherapy facilities and services across Scotland has produced substantial improvements in access and safety. Some examples include:

• A Regional Cancer Care Pharmacist has been appointed in the West of Scotland to lead the Regional Pharmacy Cancer Network. Most of the 27 newly created pharmacist and technician posts funded by Cancer in Scotland have been appointed facilitating continued improvements in the provision of pharmaceutical care. Immediate benefits from the investment in staffing include increasing adherence to pharmaceutical care standards and continued improvements in the safe, clinical and cost effective utilisation of cancer medicines.

• SCAN pharmacy network is playing a leading role in the development of pharmaceutical care plans which are being used to document and record pharmaceutical care for cancer patients. Work is ongoing to develop an electronic version, which will have major quality assurance benefits and reports on patient outcomes, toxicities, dose modifications and dose interventions to be obtained.

• An additional pharmacist, pharmacy technicians and aseptic dispensing pressure isolators in Tayside are providing enhanced capability to deliver chemotherapy in line with Scottish Executive guidance on the Safe Use and Disposal of Cytotoxic Chemotherapy Drugs. In Highland an oncology pharmacist, pharmacy technicians and chemotherapy nurses support pharmaceutical care planning as recommended in Cancer in Scotland.

Information Management and Technology (IM&T)

A National IM&T Plan for Cancer was produced by the Cancer IM&T Sub-Group of the Scottish Cancer Group and circulated to NHS Boards, Trusts and Regional Cancer Advisory Groups in December 2002. Subsequently a Project Board was established in March 2003 to support implementation of this National Plan. Working alongside existing national initiatives such as SCI (Scottish Care Information) and ECCI (Electronic Clinical Communication Initiative) the main areas being taken forward initially are:

• Making available a national facility for providing referral guidance and protocol based referral using the SCI Gateway.

• Encouraging development and implementation of Clinical Cancer Information Systems to support clinical information recording and display. These systems (whether NHSScotland-owned or commercial) will need to comply with agreed national standards and link to national systems, notably SCI Store.

• Ensuring collection of nationally agreed datasets to support quality assurance of cancer services.

Work is ongoing in these areas and progress is to be evaluated towards the end of 2003. A national event is planned for early 2004 to launch and demonstrate the various cancer IM&T systems up and running throughout the country and others that may be suitable for adoption or adaptation.

Patient Information

The Patient Information Sub-Group of the Scottish Cancer Group brought forward recommendations aimed at securing improved access to information needed by patients and their families/carers.

"A Guide to Securing Access to Information" was published in March 2003. It poses a number of highly relevant and specific questions that cancer networks and NHSScotland should seek to address before developing new leaflets or other forms or information for patients.

The challenge is to ensure that regional cancer networks have in place a strategy for patient information and information policies that ensure easy access by patients and their carers to consistent and reliable information within the healthcare system, as well as to sources of information and support provided by other organisations.

Progress in this area is also monitored via the Cancer in Scotland Implementation Monitoring Framework.

08. SUPPORTING RESEARCH AND DEVELOPMENT

Scottish Cancer Research Network

Cancer in Scotland highlighted that there is significant evidence that outcomes are improved for those patients treated in environments where research is the norm or for those patients who are involved in cancer clinical trials.

In March 2002 the Minister for Health and Community Care announced an additional 1 million to support the development of a Scottish Cancer Research Network (SCRN): 500,000 from Cancer in Scotland investment, 250,000 from Chief Scientist Office (CSO) and 250,000 in kind support from the Cancer Information Programme of ISD (Information and Statistics Division of the Common Services Agency for the NHS in Scotland).

The SCRN maps on to the three existing regional cancer clinical networks and is a fully participating member of the UK National Cancer Research Network (NCRN)

Implementation Plans are to be submitted to the Scottish Cancer Group for endorsement during autumn 2003. In the meantime Regional Cancer Research Lead Clinicians and Coordinators are now in post and remaining staff are being appointed over the autumn 2003.

UK National Translational Cancer Research Network (NTRAC)

NTRAC has been established to help improve the quality of cancer care by creating a national network of cancer research centres, embedded in the NHS, that integrates scientific and clinical expertise, and shares knowledge and resources for the benefit of cancer patients. CSO have made available funding to establish an NTRAC centre in Scotland and bids have been invited by the end of October 2003.

CSO will also provide additional money to form a translational network across Scotland (STRAC) to facilitate population-based and collaborative studies. However, plans for how this should develop cannot be made until the outcome of the NTRAC competition is known and the centre plan agreed.

Scotland is represented through CSO membership of the National Cancer Research Institute (NCRI) Subgroups. These groups oversee the work of NCRN and NTRAC and provide a mechanism through which Scotland can contribute to the forward direction of these national initiatives.

09. MAKING IT HAPPEN

Regional Cancer Advisory Groups (RCAGs)

RCAGs continue to be the vehicle for regional planning of cancer and related services. In collaboration with NHS Boards they provide input into the development of local health plans and are responsible for prioritising and planning future investment in cancer services and changes in service delivery. The RCAGs are required to link with the wider Regional Planning Groups and the emerging regional workforce development networks.

Managed Clinical Networks (MCNs)

MCNs bring together all of the professions and disciplines involved in the care of patients with a particular cancer type. They are the vehicles to ensure the best quality of care is provided equitably across a geographical area. The cancer networks have been an undoubted success and are demonstrating real improvements to patient care.

• The West of Scotland Bowel Cancer network is working across the 17 hospitals providing acute services and primary care to design, develop and pilot a new referral process and has reduced waiting times between referral and diagnosis from several months to a mean of 21 days for cancer patients.

• The Breast cancer network in the South East of Scotland have developed and implemented an electronic GP referral system in Lothian which means that GPs can use computer based information to help refer patients who need to see a specialist. Using electronic referral guidelines not only speeds up the procedure but helps ensure more equitable access to hospital based services.

• A gynaecological cancer network has recently been established across the North of Scotland and, although in the early stages of development, is developing referral guidelines and protocols for chemotherapy and radiotherapy to ensure equitable access and consistent approach to treatment across the North.

Patient Involvement

At the heart of the Scottish Executive's vision in the White Paper Partnership for Care is a patient-focused culture of care, which is developed by a new partnership between patients, staff and Government. At a Scottish Parliament debate on Patient Focus and Public Involvement in June 2003 the Minister for Health and Community Care reiterated his aspiration to develop systems of care that reflect the needs, concerns and experience of patients. For this to happen, patients must be engaged in a more serious and systematic way than at any point in the past.

There is a flourishing, albeit fledgling in some areas, patient focus and public involvement programme in cancer. In the South East significant advances have been made through the efforts of a dedicated patient involvement worker. Through the New Opportunities Fund (NOF) two patient involvement workers are to be appointed in NOSCAN and Scottish Executive funding is enabling a patient involvement worker to be appointed in WOSCAN.

There are many examples of current initiatives in cancer, just a few of which are:

• A Partners in Change project in Uist funded by NOSCAN generated a series of focus groups for cancer patients focusing on the impact of travel to the mainland for diagnosis and treatment. A video of the project was produced which it is hoped will lead to greater understanding of patient issues.

• The contribution of patients and carers in the design and user testing of the South East Scotland Cancer Information Network.

• Interviews with patients in the West of Scotland on their needs and views. This, together with research findings, is being used to inform the provision of patient information for cancer networks.

Cancer Investment

In his opening speech at a debate on cancer investment in the Scottish Parliament on 4 September the Minister for Health and Community Care stated that:

"From the outset, two key features of the [cancer] strategy have been the involvement of front-line staff in decisions about investment priorities and ring fencing of the additional investment, which built up to 25 million a year. . . . I am pleased to announce that the additional investment will be ring fenced within Board allocations for at least the next two years, so that the targeted investment can continue and the progress can be monitored."

From April 2004 the 25 million additional cancer investment will be subsumed within NHS Boards' Unified Budgets, however, it will continue to be ringfenced for cancer services for 2004-05 and 2005-06 at which time the position will be reviewed again.

Managing Implementation

The Scottish Executive Health Department Cancer Branch is responsible for the continuing development of policy and the implementation of Cancer in Scotland.

Regional cancer networks continue to provide six monthly monitoring reports on their cancer investment plans and other aspects relating to the implementation of Cancer in Scotland, for example development of managed clinical networks, redesign. These reports are collated centrally and published on the Cancer in Scotland website.

Support and facilitation is provided centrally to progress areas of the implementation programme such as the Cancer Service Improvement Programme (page 12), the Scottish Cancer Research Network (page 18) and the Networks Development Programme (page 12).

The Cancer Branch also directly supports the work of the Scottish Cancer Group and its Sub-Groups.

Scottish Cancer Group

Under the Chairmanship of Dr Anna Gregor, the Scottish Cancer Group normally meets quarterly. The main standing items for discussion are the annual regional investment plans, six monthly monitoring reports and reports from the sub-groups. The group has also considered NOF proposals, patient focus and public involvement, communication skills training, SIGN Guidelines and monitoring of Scottish Medicines Consortium (SMC) recommendations. Reports commissioned by the previous Scottish Cancer Group but submitted to the current group include "Tobacco and Alcohol in Ethnic Minority Groups: The Measurement Challenge" and "Why do affluent cancer patients have better survival than deprived? - Comparison of baseline characteristics and subsequent patterns of recurrence".

Sub-Groups of the Scottish Cancer Group take forward specific areas of work. These may be shortlife working groups with a remit to undertake a time-limited piece of work or standing sub-groups with a longer term strategic remit.

Short-life Project Specific Groups

Referral Guidance Sub-Group (work completed)
Produced the " Scottish Referral Guidelines for Suspected Cancer" which were published and are currently being implemented (page 10).

Patient Information Sub-Group (work complete)
Produced the document " A Guide to Securing Access to Information" which was published and is currently being implemented (page 17).

PET Short-life Working Group
The Group is finalising its report for consideration by the Health Department Management Board in October 2003. Thereafter this will be issued to NHSScotland along with guidance for implementation (page 11).

Radiotherapy Activity Planning Short-Life Working Group
Undertook a fast-rack review of radiotherapy activity pathways and following approval from the Health Department Management Board will carry out a more detailed option appraisal in collaboration with NHSScotland (page 11).

Cancer Nursing Short-Life Working Group
Currently working to develop a " Framework for Nursing People with Cancer". It is hoped that this will be published in early 2004 following extensive consultation and comment (currently underway) (page 16).

Standing Sub-Groups

Cancer IM&T Sub-Group
Provides strategic advice on IM&T requirements to support cancer services in Scotland. In 2002 the Group published a National IM&T Plan for Cancer and Guidance on the evaluation of IT systems to support cancer services. Project Board is currently overseeing the implementation of the National Plan (page 17).

Quality Improvement Sub-Group
Advises on clinical effectiveness and quality in cancer services, with particular reference to supporting clinical governance and implementation of Cancer In Scotland. Work in progress includes the development of a Quality Improvement Framework for Cancer Services (page 12).

Genetics Sub-Group
Maintains a watching brief on developments in the genetics field and co-ordinates, monitors and evaluates the provision of Cancer Genetics Services.

Minutes of the Scottish Cancer Group and its Sub-Groups are published via the Cancer in Scotland website.

Cancer Open Forum
An annual Cancer Open Forum has been held in each of the past two years, attracting around 500 delegates from across Scotland. The third Cancer Open Forum is being held in October 2003 and will focus on Change and Innovation within the Cancer in Scotland strategy. It will bring together leading cancer professionals from Scotland, England, Northern Ireland and Wales, patient representatives, the voluntary sector and professional organisations.

This conference will showcase the Cancer Service Improvement Programmes underway and planned in Scotland and throughout the UK, sharing the opportunities and challenges of service improvement, and looking ahead to the next stage of the Cancer in Scotland strategy.

POLICIES AND DOCUMENTS

• A Guide to Securing Access to Information, Scottish Executive (2003)

• Cancer in Scotland: Action for Change: Regional Cancer Advisory Groups HDL (2001) 71

• Clinical Standards: Specialist Palliative Care, NHS Quality Improvement Scotland (2002)

• Eating for Health: A Diet Action Plan for Scotland, Scottish Executive (1996)

• European Code Against Cancer and scientific justification: third version (2003), Europe Against Cancer

• Health in Scotland 2002, Report of the Chief Medical Officer, Scottish Executive (2003)

• Hungry for Success - A whole school approach to school meals in Scotland, Final Report of the Expert Panel on School Meals, Scottish Executive (2003)

• Improving Health in Scotland - The Challenge, Scottish Executive (2003)

• Lets Make Scotland More Active: A strategy for physical activity, Scottish Executive (2003)

• Partnership for Care, Scotland's Health White Paper, Scottish Executive (2003)

• Positron emission tomography (PET) imaging in cancer management, Health Technology Assessment Report 2, Health Technology Board for Scotland (2002)

• Prostate Cancer Risk Management Programme - Primary Care Resources Packs SEHD/CMO (2002) 10

• Prostate Cancer Risk Management Programme: an information pack for primary care, Department of Health, England and Cancer Research UK

• Prostate Specific Antigen (PSA) testing for prostate cancer SEHD/CMO (2001) 20

• Scottish Referral Guidelines for Suspected Cancer HDL (2002) 45

• World Cancer Report, World Health Organisation (2003)

Useful web addresses:

Cancer in Scotland:
www.cancerinscotland.scot.nhs.uk

Scottish Executive Health Department:
www.scotland.gov.uk

Scottish Health on the Web
www.show.scot.nhs.uk