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CANCER IN SCOTLAND: ACTION FOR CHANGE

05. IMPROVING CANCER TREATMENT AND CARE

PATIENTS AND THEIR CARERS MUST BE INVOLVED AS EQUAL PARTNERS IN DECISIONS ABOUT CARE AND TREATMENT AND MUST BE PROVIDED WITH THE INFORMATION THEY NEED WHEN THEY NEED IT.

Providing information and advice for patients as well as securing their input to the continuous development of services may often be achieved through patient groups or other advocates on their behalf. Whether through these means or one-to-one discussions, there is ample evidence to support the need for healthcare professionals to communicate more effectively if we are to improve the patient's journey between and across different care settings.

Our National Health pledged that we will:

• update our strategic programme for modernising information management and technology in the NHSScotland. The work of Electronic Clinical Communications Implementation (ECCI) and Scottish Care Information (SCI) are described in Chapter 7.
• set up an Information Task Group to develop better access to the information needed by people with cancer and their families.

The patient care pathway

Patients must have clinically effective treatment, delivered safely and with minimum disruption to their lives. To secure continuing improvements in treatment for people with cancer, effective multi-professional and multi-disciplinary team working is essential. As most cancer patients spend the majority of their time in the community (not in hospital as may be thought) GPs and the entire primary care team are integral to the
co-ordination and provision of patient care. However, most patients will also need the attention of specialists such as surgeons and oncologists who are based in acute hospitals and in tertiary treatment centres.

In Scotland, specialist treatments such as radiotherapy and chemotherapy are provided from five Cancer Centres - in Aberdeen, Dundee, Edinburgh, Glasgow and Inverness - and consultant oncologists based in these centres travel extensively to provide support and care to patients across the country.

Improving Quality

We know that the implementation of available national clinical guidelines, for example those for breast, lung, colorectal and testicular cancer issued by the Scottish Intercollegiate Guidelines Network (SIGN) and monitoring of services against nationally agreed clinical standards (Clinical Standards Board for Scotland (CSBS)) have the potential to improve services and outcomes for patients. The work on future scenarios for cancer services which has been undertaken to support this cancer strategy highlights the importance of redesigning services and fully implementing national clinical guidelines so that appropriate specialists can bring their skills together for the benefit of patients. It is estimated that for some cancers reorganisation of services may lead to reductions in mortality of between 5 and 10%. Changing the way the NHS is organised is about much more than efficient use of staff and resources - it may also save lives. Clearly, therefore, we must do everything we can to ensure that cancer MCNs are up and running effectively as quickly as possible.

• We have already pledged to ensure that cancer MCNs will be fully established by 2002.
• By a process of prospective clinical audit and continuous assessment of the services provided, regional cancer networks will provide a consistent framework of quality assurance in Scotland.

Specific services

For people with cancer there are a variety of treatment options which have to be assessed individually for each patient. The main options are surgery, chemotherapy and/or radiotherapy.

Through their planning processes Regional Cancer Advisory Groups will require to match the need for effective and safe treatment with patient expectations of receiving that treatment as close to home as possible with minimal delay and disruption to their everyday lives. However, we recognise, as do patients, that it may sometimes be inevitable to have to travel to local or more distant hospitals or centres for treatment.

Surgery

Scotland is fortunate in having a highly trained and effective surgical workforce. We are also fortunate that the quality of that surgery is high. Surgeons in Scotland have routinely audited their practice for many years and they are committed to continuous quality assurance.

There is evidence that some types of cancer are best dealt with by surgeons with a special interest in that type of surgery. Cancers of the oesophagus, rectum and pancreas are often dealt with by general surgeons but further research and audit are needed to demonstrate if specialist care improves outcomes in this group of cancers. Audit of cancer of the pancreas is being planned. A national audit of cancers of the oesophagus and stomach has recently been completed, the results of which will be available by the autumn of 2001, and which will inform further consideration of how best to organise services to improve outcomes for patients.

• In the light of these audits, and through the Scottish Cancer Group, we will consult surgeons and patients on the creation of specialist upper and lower gastrointestinal cancer network services for Scotland.
• As part of their planning cycle, surgical capacity for cancer will be reviewed by the Regional Cancer Advisory Groups.
• As a priority, recommendations on additional clinical workforce needs will be made by the Scottish Cancer Group.

Care for some other types of cancer is already highly specialised. Cancers of the head and neck, cervix and vulva, and haematological cancers such as lymphoma are now much more commonly treated by specialists with a particular interest in these diseases. As networks continue to audit outcome of care, further opportunities to consider the creation of specialist units and services may present themselves. Patients and GPs must be involved in reviewing these issues so that their concerns about access and communication are addressed.

Radiotherapy

Radiotherapy will remain as a major modality in both the curative and palliative care of cancer patients. For a number of years, and as demand for services has continued to grow, we have had to rely on too many out-of-date machines. But, over the last two years much has been done to improve the provision of radiotherapy services. This has been achieved through a centrally driven, collaborative and inclusive modernisation programme involving Cancer Centre Directors along with Physicists and the Director of Scottish Healthcare Supplies working together to ensure the best deals possible, whether aimed at purchasing or leasing new linear accelerators for Scotland's five Cancer Centres.

These new machines will be more dependable and will help to reduce the time patients wait for treatment, increase efficiency and offer the possibility of treating more patients per day. If we are to maintain progress and to be able to meet predicted demand over the next 10 to 15 years, there is a need for continuing significant investment in the provision of radiotherapy equipment and the staff to support it.

Further developments are also to be expected in exploiting the technical potential of radiation therapy and improving the interface between medical and clinical oncology through, for example, the use of drugs in conjunction with radiotherapy. Other possible developments such as intra-operative radiotherapy for breast cancer may have significant impact on the radiotherapy workload. Regional Cancer Networks will be expected to anticipate and plan for these developments.

• The strengthened Scottish Cancer Group will have a rolling brief to continuously monitor the age and effectiveness of radiotherapy equipment and to make recommendations for further long-term capital investment.

Continuous Hyperfractionated Accelerated Radiotherapy

Continuous hyper-fractionated accelerated radiotherapy (CHART) is a way of delivering radiotherapy which evidence shows can improve the outcome for some patients with the commonest type of lung cancer. It is not currently available in Scotland.

• Provision of CHART facilities in Scotland will be assessed as a priority within a strategic review of the future needs for radiotherapy delivery.

Chemotherapy

More people are now receiving chemotherapy as part of their treatment for cancer and there is evidence that this trend will continue. In particular, Cancer Scenarios estimates that in the next 10 years, the demand for chemotherapy may double.

This forecast has clear implications for future level, design and staffing of services. The safe delivery of chemotherapy is highly specialised, and wherever chemotherapy is administered services must be of the highest standards.

Many side effects previously associated with chemotherapy can be reduced by good supportive care, and standardised protocols can greatly reduce the distress commonly associated with this form of treatment.

• Evidence-based protocols must therefore be in place for the prescribing, preparation and administration of chemotherapy and supportive treatment across MCNs.
• Where gaps are identified in evidence-based protocols, for example the use of oral chemotherapy in the community, the Scottish Cancer Group will commission expert advice to inform future practice.
• Regional Cancer Advisory Groups will be required to demonstrate that their investment plans support equity of access to and the safe delivery of chemotherapy for everyone who needs it.
• Schemes for pharmaceutical care planning for patients with cancer are currently being piloted. If demonstrated to be effective, Regional Cancer Advisory Groups will require to consider how best to secure implementation.

Advances in Chemotherapy

Progress in molecular biology, genetics and pharmaceutical science is the main focus of current research. Examples such as monoclonal antibody therapy for breast cancer may herald significant new advances for which we will have to plan.

• Scientists and the NHS need to work together to ensure that developments of proven benefit are taken from the laboratory to the patient.
• The Scottish Executive, HTBS and Regional Cancer Networks will work together so that patients have fair and equitable access to cancer drugs and other treatments on the basis of a common view of their effectiveness and affordability.
• The Genetics Sub-Group of the Scottish Cancer Group will continue to monitor the developments in the genetic testing of tumours and report on their likely impact.

Rehabilitation

Many forms of cancer and its treatment can result in long term disability. This is particularly true for patients with cancers of the head and neck where facial appearance, speech and eating may well be affected by the cancer or by treatment. Surgery for sarcomas and breast cancer can also cause significant problems with body image and social adaptation.

• Referral to services appropriate to their needs must be agreed between patients and clinicians.

Rehabilitation may require the input of specialists drawn from a wide range of disciplines including, for example, restorative dentistry and prosthodontics, orthotics, speech and language therapy, dietetics and clinical psychology.

CANCER IN CHILDREN, YOUNG ADULTS AND ELDERLY PEOPLE

Children

Children's cancers are comparatively rare. Leukaemia and lymphoma in children make up approximately one third of the total number of new cases of cancer in children each year. All children with leukaemia are treated on nationally agreed MRC protocols determined by the type of disease they are suffering from. More than 90% of children with leukaemia are treated within MRC trials protocols. The remainder tend to be young adolescents treated in adult units.

There have been vast improvements in survival of children with leukaemia over the past 30 years.

Children's hospice services are also provided for. The Children's Hospice Association runs Rachel House, the hospice for children in Kinross. About 10% of the children using the hospice have cancer.

• The first 10 Diana Community Children's Nurses in Scotland have recently completed their training. These nurses are paediatric nurses who have undertaken additional training so that they can ensure key elements of care are in place locally to maintain or improve quality of life for children with life threatening or life limiting diseases. A further 13 nurses completed their training this year.

Young adults

Teenagers with cancer are a group whose needs are currently not well catered for. Young children are treated and nursed in settings appropriate to their age. Teenagers with cancer, however, are faced with the choice of being nursed alongside young children or alongside patients who are often much older. At a time when a young person has all the pressures of growing up to contend with, the additional burden of a diagnosis of cancer is not helped by the absence of facilities specifically designed to support a young person through an arduous treatment regime.

• We recognise the absence of dedicated facilities for teenagers who have cancer in Scotland. The Scottish Cancer Group will consider how best to improve services for young adolescents with cancer, including for example the possibility of initiatives with NHSScotland and the voluntary sector.

Older people

Cancer Scenarios predicts that in the next 10 to 15 years, with an ageing population, more people will be living with cancer. As the risk of cancer increases with age we can therefore predict that more cancer patients will have particular needs because they are older. Often this makes it difficult to cope with all aspects of diagnosis and management. We need to understand better how elderly people with cancer can be supported.

• To ensure the particular needs and difficulties faced by older people with cancer are addressed, the Scottish Cancer Group will work alongside the Chief Medical Officer's Expert Group on the Healthcare of Older People.

Managed clinical networks for cancer

Managed clinical networks bring together all of the professions and disciplines involved in the care of patients with a particular cancer type. They ensure that the best possible quality of care is provided equitably across a geographical area. Regional networks have already been established in some areas and for some cancer types, e.g. the Glasgow & West of Scotland Gynaecological Cancer Network. To ensure that there is comprehensive coverage across Scotland other tumour specific networks will follow.

• Our National Health confirmed that by 2002, fully functional cancer MCNs will be in place for all cancer services.

To be effective, cancer MCNs require appropriate support. If they are to audit their work - and as noted variously throughout this document, clinical audit is essential - they need to be supported by the provision of clinical support, information systems and audit staff. Because network members - clinical and managerial - are employed by many different Trusts and belong to many different disciplines, they will also need help in working across geographical, institutional and professional boundaries.

• Cancer MCNs are central to and responsible for ensuring effective service redesign. Working within the context of the tried and tested cancer service collaborative framework (described below), by April 2002 a major programme of service redesign will be in place to ensure swifter diagnosis and treatment, and to improve patients' experiences of their care.
• Each NHS Board must immediately review its support of cancer networks and ensure that adequate levels of clinical, managerial and administrative support are provided to take forward all of the requirements placed on networks, including service planning, prospective audit, service redesign, workforce planning etc. and to secure implementation and follow up of this strategy.
• So that standards of care are continuously monitored and improved locally and nationally, and to meet the needs of the CSBS, each of the proposed three Regional Cancer Advisory Groups will be expected to present, at least annually, a report on the services provided and the outcomes of patient care to relevant clinical governance committees across their region.

Service redesign and Cancer Service Collaboratives

Although patient surveys have shown that 90% of people are satisfied or very satisfied with the care they receive, we know that services across the NHS are characterised by variation in access, clinical practice and outcomes. In order to improve results we need first of all to improve the systems and processes already in place.

• A national programme of service redesign, integral to regional tumour specific MCNs will be taken forward. As has been demonstrated elsewhere, the cancer collaborative approach facilitates the sharing of ideas, knowledge and methodologies and simultaneously promote an environment which encourages learning, accelerates the pace of change and brings improvements for patients in their journey of care.

This programme will be based on the service redesign methodology piloted across Scotland since 1997 and the collaborative improvement methodology adopted by the Cancer Services Collaborative programme in England.

• Each MCN will focus on patients with a specific cancer. Project teams will set specific aims that will be regularly monitored to give teams the feedback they need to ensure that the changes they are making to patient care pathways are having the desired impact. Key measures will focus on times to first consultation, through investigation, diagnosis and treatment.

Some of the benefits already achieved through service redesign and the Collaborative approach include:

• diagnostic processes previously requiring three separate visits to hospital are now carried out in a single visit
• waiting time for radiology reduced by up to 60%
• integrated approaches have been developed to provide patients with information across the process of care so patients and carers get the information they need at the time they need it

Arising from our planned work programme, we would expect to see similar benefits for Scottish patients.

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