Developing Effective Cancer Survivorship Services Conference: News & Speaker updates
Today’s one day conference focused on cancer survivorship, improving outcomes for people living with and beyond cancer, moving from surviving to thriving.
Through national updates and practical case studies the conference aimed to support the development of effective cancer survivorship support and services.
Chaired by Moira Fraser Director of Policy and Public Affairs Macmillan Cancer Support the day provided an extended focus on meeting the unmet needs of people living with and beyond cancer, accelerating the roll-out of stratified follow up pathways and the commissioning of holistic packages of support, ensuring every person with cancer will have access to relevant elements of the Recovery Package and that stratified follow-up pathways should be in place for the common cancers, and the development of a national quality of life metric to ensure that we monitor and learn lessons to support people better in living well after treatment has ended.
Duleep Allirajah Head of Policy Macmillan Cancer Support opened the conference with a national update session on Living With and Beyond Cancer and Implementing Strategic Priority 4 of the National Cancer Taskforce. Duleep discussed:
- meeting the unmet needs of people living with and beyond cancer
- accelerate the roll-out of stratified follow up pathways and the commissioning of holistic packages of support
- ensuring every person with cancer will have access to relevant elements of the Recovery Package and that stratified follow-up pathways should be in place for the common cancers
- the development of a national quality of life metric to ensure that we monitor and learn lessons to support people better in living well after treatment has ended
- moving forward
Duleep Allirajah Head of Policy Macmillan Cancer Support full presentation click here
In his presentation Duleep Stated:
"There is no one size fits all after cancer treatment"
"Physical and emotional concerns account for 80% of all concerns"
Duleep Allirajah Presentation Abstract:
The cancer story is changing. Since 2010, the number of people living with cancer in the UK has grown by almost half a million people. The dramatic increase in people living with cancer is largely due to improvements in survival and detection, and a growing and ageing population, with the number of over-65s living with cancer increasing by almost a quarter (23%) in just five years. Of the 2.5 million people currently living with cancer, 1.6 million were diagnosed five or more years ago. By 2030 , 4 million people will be living with cancer.
Though more people are surviving cancer this doesn’t mean they are living well. 1 in 2 are living with other co-morbidities, 1 in 4 suffer from the effects of treatment, and 1 in 5 have unmet needs. There is no one-size-fits-all model of aftercare for all ‘survivors’. Broadly speaking, cancers can be classified into three groups based on cancer type and five year survival (2). These groups are:
- ‘Do well’: Long-term survivors in this group can often self-manage with appropriate support.
- ‘Intermediate group’: They have similar levels of physical concerns as those in the ‘poor health’ group and ongoing treatment or care may be required most of the time
- ‘Poor health’: Earlier diagnosis is most important for this group and the care required may contain complex case management or early access to palliative care.
To address the challenge of increasing prevalence we need to move away from the traditional medical model of follow-up to tailored approach to aftercare which is focused not just on detecting recurrence but on helping people live as well as they can and get their lives back after treatment. Building on the models of care and interventions piloted through the National Cancer Survivorship Initiative (NCSI) (3), the implementation plan for the new Cancer Strategy for England (4) aims to:
- Ensure that all patients have access to a recovery package at the end of treatment
- Roll-out risk-stratified follow-up pathways, initially for breast cancer and for other tumour sites in subsequent years.
- Develop a quality of life metric to measure and incentivise the shift to managed aftercare
Duleep Allirajah Biography:
Duleep began his career in social security, working first for the Benefits Agency before moving into welfare rights advice. He managed the welfare rights service at Action for Blind People before joining the policy team at the Royal National Institute for Deaf People (RNID) where he led on social security and employment policy.
Duleep joined Macmillan in 2004 and has played a leading role in the charity’s campaigns including hospital parking, prescription charges, employment and welfare reform. His team have been instrumental in shaping successive NHS cancer strategies in England and articulating the ‘survivorship’ agenda. He led a workstream of the National Cancer Survivorship Initiative (NCSI) which developed and tested tools and services to improve benefit advice and return to work support for cancer patients.
Richard Surman Trustee and Chair The Pelvic Radiation Disease Association continued the morning sessions with a look at the Cancer Survivor’s Perspective and discussed:
- what support do people with cancer, cancer survivors and their families need?
- improving public awareness of support for people living with and beyond cancer
Richard Surman Trustee and Chair The Pelvic Radiation Disease Association full presentation click here
In his presentation Richard stated:
"Improving public awareness - political public and medical public - political public are not listening and not an interesting topic to talk about survivorship of cancer"
Richard Surman Biography:
A former headmaster and founder of one the UK’s largest annual poetry festivals, Richard Surman now divides his time between Asturias, N Spain, and London, where he lives in and curates one of London's most eccentric historic homes.
He took up professional photography in the late 1970s and has since worked extensively for advertising, editorial and corporate clients throughout the world. He now concentrates on his own books and on assignments for magazines combining text and photography.
He has also published a number of books with HarperCollins and Collins Reference as well as collaborating on a wide range of gardening, travel and specialist guide books. He contributes to magazines in the UK, Spain, Sweden and the USA, and has been a regular contributor to the National Churches Trust magazine.
In 2007 he was diagnosed with anal cancer and having experienced severe consequences following radiotherapy, became chair of the newly formed Pelvic Radiation Disease Association.
The day continued with sessions on:
- Sustaining recovery and delivering an effective recovery package Case studies in Practice
- Involving and engaging cancer survivors to improve survivorship services Case study: Prostate Cancer
- Delivering supported self management
- Improving the survivorship pathway: Meeting Practical and Emotional Needs
- Living with and beyond cancer: Delivering an effective survivorship programme to improving outcomes and managing late effects
- Living well and delivering effective risk stratified follow up
14 June 2016