Better Cancer Care, An Action Plan

SECTION SEVEN: LIVING WITH CANCER

As Scotland's population ages, treatments advance and screening programmes prove increasingly effective at detecting cancers at an earlier stage, many more people will find themselves living with and beyond cancer. Patients and those who care for them face considerable uncertainty and may need to cope with unpleasant and sometimes debilitating treatments which could have both physical and psychological consequences for many years to come. They may receive treatment over many years as their condition relapses or remits. As a result, cancer is increasingly being seen as a long-term condition and healthcare providers, in both the statutory or voluntary sector, need to find ways of supporting and empowering patients, giving them the confidence and tools to enable them to maintain the level of independence they wish to have.

Survivorship

"After the original operation and the radiotherapy came the 'that's fine we will see you in a year' period where I was left to get on with coming to terms with the fact that I had a cancerous brain tumour. After the superb care at the start of my journey I found a severe lack of after-care." "Many survivors of childhood cancer will experience social, emotional, physical and medical challenges long after their treatment is finished." Better Cancer Care Consultation Respondents

Macmillan Cancer Support define the concept of survivorship as, "… someone who has completed initial cancer management and has no apparent evidence of active disease, or is living with progressive disease and may be receiving cancer treatment but is not in the terminal phase of illness (last six months of life), or has had cancer in the past". Such survivors, they point out, have a range of physical, emotional, practical and financial needs.

The Scottish Government agrees that survivorship is far more than just a health issue and given that there is a lack of current data and research, further work is needed to fully understand survivorship needs. It will therefore establish a working group on survivorship, which will feed back to the Scottish Cancer Taskforce (as part of the new arrangements for overseeing the implementation of Better Cancer Care), to consider how best to maintain the focus on this issue and support NHSScotland and its partners in meeting survivorship needs. This will link to work that is taking place on such issues in UK-wide clinical studies development groups within the National Cancer Research Network in order to improve understanding of the issues involved and highlight any areas requiring further research.

Cancer Poverty

"The second greatest cause of stress among cancer patients, after diagnosis, is loss of income and resultant poverty." Better Cancer Care Consultation Respondent

Many pople affected by cancer in Scotland experience significant levels of financial hardship as a direct result of their cancer diagnosis. Ninety per cent of people affected by cancer in the UK experience a drop in income and an increase in daily living expenditure because of their cancer diagnosis. As a result, many patients and families affected by a cancer diagnosis require financial advice and support on a wide range of issues including employment rights, debt, saving and borrowing, pension rights, fuel poverty and insurance.

The Scottish Government and Convention of Scottish Local Authorities will publish their joint Framework to Tackle Poverty in Scotland in November 2008. On the basis of the best available evidence, the Framework will set out a number of actions the Scottish Government and its partners will take to deliver improvement across four main areas:

• Reducing income inequalities
• Introducing longer-term measures to tackle poverty and the drivers of low income
• Supporting those experiencing poverty
• Making the tax and benefits system work for Scotland.

Good progress has already been made in partnership between the voluntary and public sectors in supporting people to navigate the benefits system and the new Framework will continue the process of developing financial inclusion activity across the public services in line with the recommendations of Equally Well. The need for further action to support people to meet the forward challenges they face in living with and beyond cancer was raised by a number of participants in the national discussion that informed the plan. The work of Macmillan Cancer Support and its partners in this field has made a valuable contribution to the lives of many people with cancer and the Scottish Government will invest £500,000 to help ensure the continuing expansion and success of this work. This will, amongst other things, allow for the development of new approaches to the delivery of financial advice and support to cancer patients and their families, including those living in remote and rural communities. The investment will also enhance the training that is available to help Welfare Rights officers, money advisors and other support staff in the voluntary and statutory sectors to better understand the issues of dealing with progressive illnesses, loss and bereavement, employability and disability discrimination. NHSScotland has an important role to play in ensuring all cancer patients who need it will be referred to benefits advisors as part of their routine care and the Scottish Cancer Taskforce and a working group on survivorship will be tasked with making this a reality.

Returning to Work

People of working age with a cancer diagnosis are six times more likely to report being unable to return to work compared with people with other illnesses because of their health. The new funding will also support a specific pilot programme to better understand the barriers to work faced by people with cancer and test opportunities for supporting people with cancer back into work and helping them to sustain that employment wherever possible. The Scottish Centre for Healthy Working Lives, part of NHS Health Scotland will bring a national perspective to this work and will be tasked specifically with ensuring that the lessons learned are used to inform the development of similar initiatives across Scotland.

Tackling the Costs

The Scottish Government's commitment to abolishing prescription charges for all by 2011 has been welcomed by patients across Scotland but it recognises that this is only part of the picture. The Cancer Costs study by Macmillan Cancer Support showed that Scottish cancer patients face the highest costs in the UK for travelling to hospital for treatment, spending an average of £636 on travel and parking throughout the course of their cancer treatment. Whilst some of this disparity is an inevitable consequence of geography, the Scottish Government is committed to reducing the financial burden on cancer patients and has announced that hospital car parking charges at all NHS hospitals (except the three sites developed under Private Finance Initiative ( PFI) arrangements) will end from 31 December 2008. This applies to all car parking provision made available by NHS Boards, including hospitals, healthcare facilities and premises where NHS Boards use a contractor to manage their car park facilities on their behalf. Those NHS Boards with PFI contracts in place have been asked to enter into discussions with their PFI provider to explore what opportunities exist for limiting or reducing charges for parking. Further work will also be commissioned in conjunction with other statutory and voluntary sector stakeholders in order to:

• Improve public transport links to healthcare facilities
• Raise awareness of the schemes that are available to reimburse travel costs
• Make greater use of new technologies and ways of working to cut back on unnecessary travel.

Self Management

"Life is a bus journey … you are the driver … the professional gets on and off." Better Cancer Care NoSCAN Roadshow Participant "Self management needs to be balanced against the appropriate and equitable provision of services for those who cannot self-manage or who do not have carers able to help them on a daily basis." Better Cancer Care Consultation Respondent

Gaun Yersel, a Self Management strategy for Scotland, developed by the Long Term Conditions Alliance Scotland, was published in September 2008. This defines self management as "… the successful outcome of the person and all appropriate individuals and services working together to support him or her to deal with the very real implication of living the rest of their life with one or more conditions." It identifies the different stages at which people need support as:

• Diagnosis - supporting people in coming to the terms with their diagnosis and in making better decisions about their treatment options
• Living for today - supporting people to navigate through difficult treatment journeys and tackling the risks of social exclusion
• Progression - supporting people to respond to fluctuations in the conditions, address changing needs and tackle the psychological issues that so often accompany physical symptoms
• Transition - supporting people as they move between services and helping them to retain control at times of great stress
• End of life - supporting people to meet the range of medical and non medical challenges towards the end of their lives.

"Self-care will require a change of culture; partnership with patients, carers, families and NHS staff; training for staff and patients … be an 'active participant', not a 'passive pyjama' patient." Better Cancer Care Consultation Respondent

The Scottish Government is committed to implementing the actions in this strategy which will benefit all patients with a long-term condition, including cancer patients by:

• Improving quality and access to information available to patients about conditions, clinical services and the wider range of support that is available in local communities
• Introducing personal health plans for people with long-term conditions
• Supporting staff to further develop their communication skills and enable them to deliver care in a more empathetic and holistic way.

"I would have liked a clear roadmap to my patient journey to save worry and confusion, focused on prognosis." Better Cancer Care Consultation Respondent

As a contribution to this process, a patient-focused model has been developed in partnership between patients, carers and healthcare professionals. This can be adapted at local level to reflect local needs and the services that are available in a particular community. The model, which is available on the Scottish Government's website www.scotland.gov.uk/bettercancercare identifies the kind of support that patients might require at each stage of their journey, including:

• Useful points of contact
• Prompts about the questions that might be asked or the information that might be provided
• Information and support resources that are available to the patient and/or their carer
• Lifestyle choices and options that might support the patient in considering what they can be doing for themselves.

"[There is a] need to recognise that [self-care models] will not suit all patients, but [will] allow those who wish to do so to have the information and support to take on more responsibility for their care." Better Cancer Care Consultation Respondent

It is widely acknowledged that Cancer Clinical Nurse Specialists ( CNS) play a central role within multidisciplinary management of patients with cancer and other long-term conditions. They are often the one constant factor in the patient's journey and are fundamental to supporting people throughout.

"The 'Cancer Journey' can be very lonely and frightening for both the patient and their family. Continuity of care … and supportive relationships are of equal importance with medical and surgical care." Better Cancer Care Consultation Respondent

As the role of CNS has evolved over many years they are in a key position, along with their Allied Health Professional and Cancer Consultant Nurse colleagues to lead developments to support patients to self-manage the effects of both their cancer and side effects such as fatigue, nausea and problems with eating that often accompany their treatment regime. The physical and psychosocial problems experienced by patients need to be addressed by rehabilitation, to effect timely discharge and enable independence in ways that contribute to quality of life and enable the patient to self manage their own health. To support this, a Self Management and Rehabilitation Managed Knowledge Network was launched in 2008. This electronic network enables service users and healthcare practitioners to access knowledge and evidence-based information in relation to Self Management and rehabilitation, which is available at www.enablinghealth.scot.nhs.com

Information and Communication

"The patient journey/pathway is 'like a washing machine - you are in a spin and information comes at you from all directions'." Patient Participant in Supported Self Care in Cancer Consultation Event "The service in the beginning was superb, but then there was a feeling of abandonment. Unless you know where to go and look, you don't know where to get help. There is good help out there, but you need to know where to go for it." Better Cancer Care Conference Workshop Participant

Whilst it is important to remember that all patients are different and not everybody will want to take on greater responsibility for managing their own condition, the discussion that informed Better Cancer Care highlighted a general feeling that anxiety can be exacerbated by uncertainty. This uncertainty can be offset, at least in part, by providing the information that patients and their carers want about what is happening to them, where to go, who to see, what to expect and what treatment choices are available.

Example of Good Practice in Scotland

Communication skills are being taught to medical students as part of the medical curriculum. One good example of this is the doctor/patient communication skills class taught to fourth-year medical students at Edinburgh University in training at the Western General Hospital. This class involves participation by patient volunteers who share their experiences of doctor/patient communication. This gives young doctors the chance to come face to face with patients in a non-clinical setting and to better understand the dynamic between them and their patients.

There are a number of routes through which patients and carers might choose to get such information and the challenge facing NHSScotland and its partners is to ensure that each of these routes are as accessible as possible and that the information they offer is of a consistently high quality. The development of a National Health Information and Support Service which is due to be launched in 2009, provides a unique opportunity to ensure that patients and their carers can receive consistent, high quality information regardless of whether they chose to access this in print, face to face, over the telephone or electronically. Written communications (in print or web-based) may not however be appropriate for all patients and their families; research shows that over half the population in Scotland have low reading skills, including people who cannot read at all and those who can only read very simple text and this must be considered when information is developed.

Equally Well stated that NHS Health Scotland should deliver an accessible communication, translation and interpreting strategy and action plan, with clear outcome measures and expectations on good practice. All NHS Boards have made some progress in this respect and there is a great deal of translated information available from national condition-focused charities and other resources and stakeholders. However, there remains a requirement for a centrally co-ordinated approach and therefore the Scottish Government will work with stakeholders to develop a web resource which will gather, hold, manage, make available and develop a body of health information in a variety of languages and formats, including British Sign Language. This resource will be developed along the lines of the 'polishinformationplus' proof of concept project www.polishinformationplus.co.uk developed by a partnership led by the Scottish Consumer Council and tried and tested during 2007.

"We know from our work with disabled people, and those who do not speak English, or have it as a second language, that communication remains a major issue…. Improving staff awareness of the needs of everyone they may meet is crucial to putting patients at the centre." "Often the wrong sort of communication support is booked if hospital staff are unaware of the person's needs. This adds to an already stressful situation … [Therefore they would] not have the opportunity to make informed choices about treatment due to a lack of accessible information." Better Cancer Care Consultation Respondents

Example of Good Practice in Scotland

Now We're Talking: Interpreting guidelines for staff of NHSScotland has been distributed to GP practices. The guidelines include different language needs of patients and the importance of providing an interpreter to patients, as well as outlining different types of interpretation and how NHS professionals can work effectively with interpreters.

Inter-professional Communication

Communication with patients and their carers needs to be underpinned by communication between different professionals involved in the care of cancer patients. The consultation that informed Better Cancer Care highlighted a number of occasions where patients felt that their experience of care could have been improved by better communication between the people who supported them. Such messages pose a cultural challenge to NHSScotland. Staff groups, with the support of NHSQIS, are working to implement existing inter-professional communication standards and extend the coverage of such standards to all tumour types.

Psychological Support

Cancer and cancer treatments are known to have a significant impact on psychological wellbeing, as does the physical pain associated with these. Pain may also affect the person's psychological wellbeing and this must be addressed in order to improve their quality of life. In November 2008, Scottish Intercollegiate Guidelines Network ( SIGN) will publish SIGN 106 - Control of Pain in Adults with Cancer a National Clinical Guideline.

Psychological factors are integral to meeting needs for the exchange of information, responding to emotions, managing uncertainty, making decisions and enabling people with cancer to manage the impact on their lives.

Good psychological support services can support both patients and their carers at every stage of their cancer journey. People with cancer expect that psychological distress, concerns and symptoms will be acknowledged and identified and that they will be supported to access care, support and intervention that is appropriate to their level of need. All staff should have a basic level of knowledge and skill in psychological care for people. A survey exploring suicidal and distressing thoughts further highlights the need for psychological support. This study involved 2,900 UK cancer patients and found that 8% had recently felt they wanted to die or badly hurt themselves, which is three times more than the general population. As such, staff who are involved in providing more specialist psychological care need to have adequate support, training and supervision to enable them to achieve this.

Care systems, protocols or pathways should be developed to ensure that psychological needs are actively considered as a part of planning care. This is particularly important for patients who need reconstrutive care due to changes in their physical appearance caused by treatment. Some patients are at greater risk of developing severe psychological reactions and problems. These patients need to be identified and cancer services should have access to a range of psychological support and interventions strategies to reflect the range and complexity of psychological needs. NHS Boards and regional cancer networks will be encouraged to ensure that all patients with cancer have an assessment of their psychological care needs and that tailored responses are developed as part of personal care plans. This work should be developed in partnership with the voluntary sector and with specialist psychological care practitioners such as clinical health psychologists and liaison psychiatrists.

Carers

The support of family and friends as unpaid carers is crucial to the wellbeing of many people living with cancer and the Scottish Government regards carers as partners in the delivery of care. However, it is also recognised that many carers need support to balance caring with other responsibilities, without putting their own health at risk. That is why the Scottish Government is making an investment that will increase to £5 million per year in 2010/11 to support local NHS Carer Information Strategies. This will help identify carers of all ages at an early stage and enable them to access support, information and training, whilst at the same time looking after their own health. Many NHS Boards are complementing their strategies by operating a Scottish Enhanced Services incentive for GPs to compile a register of carers, to identify their needs and refer them to sources of support.

Carers, regardless of their age, whose caring role is substantial and regular, have the right to get their support needs assessed, independent of the person they are caring for. The Scottish Government recognises the importance of breaks from caring (or respite) and the high priority carers tend to place on the issue. A consultation by the Scottish Government on its revised short breaks guidance to improve local planning of personalised, preventative breaks which meet the needs of both the carer and cared for person has taken place and the revised guidance will be published in 2008.

The Scottish Government is providing local authorities with more funding to develop their services, including services for carers, based on local needs and priorities. There is an agreement with the Convention of Scottish Local Authorities that local authorities will provide an extra 10,000 respite weeks per year by 2010/11.

It is vital that services recognise that children with a parent or sibling living with cancer may also have a caring role. Under their Carer Information Strategies, NHS Boards must ensure that they have measures in place to ensure young carers are identified early and are signposted to sources of local support. In addition, the new guidance and resources will also help to extend personalised short breaks for young carers, including those affected by cancer.

The Voluntary Sector

Better Health, Better Care made clear the Scottish Government's determination to work in new and different ways with the voluntary sector. It announced a strategic review of the current and potential future role of that sector in the design and delivery of high quality health and care services. This is expected to be completed in partnership with representatives of the sector by Summer 2009. The lead role played by the Long Term Conditions Alliance Scotland in the development of Gaun Yersel demonstrates what can be achieved by working together and the creation of a new self management fund proposed in that document, will provide direct financial support for voluntary organisations and community groups in supporting self management for cancer and a range of other conditions.

The Scottish Cancer Coalition, established in 2003, is a partnership of 19 organisations that improve cancer services and outcomes for patients in Scotland, and to promote research and prevention efforts. The organisation exists to ensure the needs of people living with and beyond cancer in Scotland are met. Member charities have a range of expertise and experiences, but have a shared vision for collective action to make a difference for cancer patients in Scotland. The Scottish Cancer Coalition celebrates the strength and diversity of the voluntary sector and between them provides support, information and advice to thousands of people affected by cancer each year. The Scottish Government will continue to work with and support the voluntary sector to enhance existing services for patients.

The Enterprising Third Sector Action Plan 2008-2011 sets out a range of actions to create the environment in which the voluntary sector can maximise its contribution to a successful Scotland. This includes support for volunteering, the development of strategic partnerships with national organisations to enable them to contribute effectively to Scottish Government policy and the commitment to opening markets, investing in skills, learning and leadership, supporting business growth and promoting social entrepreneurship.

Palliative Care

The World Health Organization ( WHO) defined palliative care as, "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

Palliative care is therefore an integral part of the care delivered by any health or social care professional to those living with and dying from any progressive and incurable disease. It is not just about care in the last months, days and hours of a person's life, but is also about enabling someone to live with a life-threatening condition, maintaining and (as far as possible) improving quality of life for patients and their families. As well as controlling pain and other distressing symptoms, it is about helping patients and families cope with the emotional upset and practical problems of the situation, helping people to deal with spiritual questions which may arise from their illness, and supporting families and friends in their grief and bereavement.

"Many patients think that if treatment is being given, there is 'hope': i.e. of a cure, when this is in fact not possible. Clinicians have to learn how to be more honest, while also being compassionate. This is extremely difficult, but in the end both patients and relatives will appreciate the truth, and thus be able to make appropriate end-of-life decisions." Better Cancer Care Consultation Respondent "It's not all about making someone immortal - it's about making someone comfortable." Better Cancer Care Fair for All Religion Belief Roadshow Participant

Living and Dying Well, A National Action Plan for Palliative and End of Life Care in Scotland was published in October 2008. This builds upon work by the Scottish Partnership for Palliative Care and the recommendations of a wide-ranging review of palliative care services by Audit Scotland, published in August 2008. NHS Boards have appointed executive level leads for palliative and end of life services to support the implementation of this plan in partnership with Palliative Care Networks and Community Health Partnerships. In order to ensure that Living and Dying Well and Better Cancer Care are delivered in an integrated way a member of the Scottish Government Health Directorates Advisory Group on Palliative and End of Life Care will take a role in new national governance arrangements being established to support the cancer plan.

We will:

• Under the direction of the Scottish Cancer Taskforce, establish a working group on survivorship to maintain the national focus on this issue and identify requirements for further research
• Work towards referral to benefits and financial advice, incorporating a financial situation assessment, becoming a systematic part of the patient journey
• Work with MacMillan Cancer Support to develop the work of benefits advisors throughout Scotland, including new funding to extend services in new ways to remote and rural communities
• Work with MacMillan Cancer Support to develop a pilot employability project to support people with cancer to enter and sustain employment in environments which reflect their needs
• Implement the actions described in the new Self Management strategy for Scotland in conjunction with the Long Term Conditions Alliance Scotland and the Scottish Cancer Coalition
• Promote the use by clinicians, patients and carers of the new self-care model for cancer in Scotland
• Ensure that effective patient information on cancer is prioritised within the development of the National Health Information and Support Service
• Develop a central web resource for information in different languages and formats including British Sign Language
• Seek ways to improve and speed up communication to patients and between professional disciplines and services
• Work with RCAGs and NHSQIS to support the implementation of the existing standards on inter-professional communication and extend the coverage of such standards to all tumour types
• Implement guidance on short breaks for carers.