Britain Against Cancer 2013

Britain Against Cancer 2013: ‘Cancer across the Domains’

Britain Against Cancer 2013 was held on 10 December 2013 at Central Hall, Westminster.

Throughout the day, delegates from across the cancer community heard from speakers including the Secretary of State for Health, Rt Hon Jeremy Hunt MP, and Shadow Secretary of State, Rt Hon Andy Burnham MP, as well as the NHS England National Clinical Director for cancer and a host of other expert speakers.

At the conference, the APPGC launched its latest report, 'Cancer across the Domains'. The report, as the result of a year-long programme of research and consultation, maps out the priorities for NHS England across the entire cancer journey.

Notes from each of the keynote speeches, fringe events and workshops, can be found below:

Keynote speaches

Keynote: Rt Hon. Andy Burnham MP, Shadow Secretary of State for Health

Andy Burnham reflected that Britain Against Cancer brought together the cancer community across the country. He praised the voluntary sector for playing a key role in the fight against cancer and indicated that long term commitments were necessary to support research and making real impact to tackle the condition.

Andy Burnham reflected that Britain Against Cancer brought together the cancer community across the country. He praised the voluntary sector for playing a key role in the fight against cancer and indicated that long term commitments were necessary to support research and making real impact to tackle the condition. Andy Burnham reflected that Britain Against Cancer brought together the cancer community across the country. He praised the voluntary sector for playing a key role in the fight against cancer and indicated that long term commitments were necessary to support research and making real impact to tackle the condition.

On the topic of early diagnosis, Andy Burnham stated there was a need to recommit to one week diagnostic test results, as well as admitting concerns about two week referrals, indicating he wishes the Government to lower the referral threshold in order to save lives and money.

Burnham also expressed the need to put physical activity at the core of public health policy. He said that there is evidence that a link exists between physical activity and cancer, and there should be a new target by 2025 to make a larger proportion of the population physically active.


Keynote: John Baron MP, Chairman of the All-Party Parliamentary Group on Cancer

Opening the fifteenth annual Britain Against Cancer conference, John Baron took time to reflect on the successes of the APPGC, not least in the promotion of early diagnosis to improve survival rates. The Group has successfully campaigned to have survival rates included in important frameworks within NHS England and CCGs.

He then turned to introduce the APPGC’s latest report 'Cancer across the Domains'. It was an ambitious programme of work that sought input from all sides. Through roundtable discussions with NHS England Domain Directors, a widespread consultation and further evidential research, the APPGC was able to produce a report that reflects the views of the cancer community as a whole.

The report makes 18 important recommendations across the entire cancer journey.

The APPGC will be campaigning throughout 2014 in order to ensure that Cancer across the Domains’ recommendations shape decisions on services and outcomes in the newly reformed NHS.



To improve cancer services, the APPGC debate key issues and campaign to ensure policy-making remains patient centred.

Find out more

Fringe events

Fringe event: Bank your tissue: Invest for future generations

Baroness Warwick, Chair, Human Tissue Authority

Introducing the session Baroness Warwick set out the work of the HTA, what it has achieved to date as well as plans for the future.

Professor Charles Swanton, University of Central London

  • Prof. Swanton set out how crucial access to tissue is for his research to better understand tumour evolution.
  • He outlined a number of recent studies including biopsies of kidney cancer which showed branched, rather than linear, evolution – depicted diagrammatically as trees (with trunks and branches). It is possible to classify the tree shape by categorising the seed.
  • The new approach is based on whether mutation is present in every cell. Prof. Swanton explained that no two cancers are the same and within each tumour each cell is different, so they are difficult to treat as diversity leads to resistance.
  • With cancer macroevolution there are large genetic changes – chromosomes are reshuffling like a pack of cards.

Victoria Chico, Lecturer, University of Sheffield

Victoria explained individuals and families ownership rights in relation to their bodies, tissue or sperm in life or death.

Dr Helen Bulbeck, Director, Brainstrust

  • Dr. Bulbeck explained that the clinical trial age had been lowered to 16.
  • In response to concerns raised by audience members about being asked for consent only half an hour before operations, she mentioned that it is crucial to involve patients in conversations about tissue banking.

Matthew Cooke, National Cancer Research Institute (NCRI)

  • Matthew explained that children can be signed up by proxy consent.
  • At 18, consent is required, but there can be issues about contacting young people when they become adults.

Fringe event: Using big data to understand the cancer population

Di Riley, Acting Head, National Cancer Intelligence Network

  • The NCIN is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research. The NCIN captures national and local patient and clinician data and brings it together to formulate a picture of the patient pathway.
  • They recognise the need for this to be shared as widely as possible in a digestible format in order to have an impact. They have therefore developed a range of tools including the Cancer Commissioning Toolkit.
  • The aim of the CCT is to assist Commissioners to identify patterns of care that can contribute to saving lives, give options regarding services, ensure value for money and improve patient experience.

Mike Hobday, Director of Policy and Research, Macmillan Cancer Support

  • Mike’s presentation focused on the Routes from Diagnosis (RfD) programme which links and analyses routinely collected data, such as Cancer Registry data and Hospital Episode Statistics. It allows us to map the cancer journey from diagnosis to death describing the health outcomes that patients experience. This can include survival times, the rate and frequency of cancer and non related cancer morbidities, and the costs of inpatient care.
  • RfD is part of the Cancer Population Evidence Programme (CPEP). Macmillan’s research has shown that there is a growing number of people living with cancer – rising from 2 million to 4 million by 2030 – and this population will be older, have more co-morbidities and increased expectations. Meanwhile, it is expected that NHS funding will remain frozen in real terms. CPEP is therefore generating and bringing together the best evidence on epidemiology, patient experiences and outcomes, health economics and effective service solutions in order to show how the NHS should meet the growing needs of people affected by cancer.
  • Mike introduced a prototype of a dynamic model – an information tool designed to help commissioners understand the burden of cancer in their local area. Distinct from other tools, the dynamic model will focus on putting population-level data and projections in the hands of commissioners.
  • This evidence will enable commissioners to be responsive to the needs of their population, understanding future trends and plan accordingly. It will also help change the conversation about cancer from one centred around short term NHS performance targets and crude measures of survival, to a discussion of survivorship and outcomes.
  • Data access remains an issue. There are serious obstacles. These include widely varying interpretation of data governance rules, a challenging infrastructure, and limited (but improving) capabilities in local NHS organisations to link and interpret data.
  • The Wellcome Trust has found that people support the use of aggregated and linked health data “for the greater good” and are comfortable with reciprocity (supplying data in exchange for better public services).
  • Data policy needs to keep up with public attitudes towards using data for improvement. The NHS is making progress towards this – some of the commitments announced at the Open Government Partnership in October will improve the availability of data. But much more could be done. The NHS rightly needs to protect patient privacy, but we believe this is possible while still realising the benefits of analysing patient level data. We also believe, done properly, the public is comfortable with it. Clearer guidance on information governance is essential, as is recognition of the role of the third sector in performing research which uses data to improve the lives of people affected by cancer.



Workshop: Cancer commissioning in the new NHS

Beth Capper and Katharine McDonald - Macmillan Cancer Support

  • Beth and Katharine outlined a number of formal and informal drivers for CCGs which they will need to prioritise. There is, however, confusion over who commissions what and there is no clear owner of the pathway.
  • There is now less focus on cancer and there has been a loss of cancer memory within commissioning structures. The stakeholders which commissioners need to engage with have also changed and increased in number.
  • They said that the current challenge is that it is not clear what individual services actually cost providers to deliver, which makes the move from block contracts is difficult.

Dr Anthony Gore, General Practitioner

  • Anthony said he was proud that his CCG has high quality peer review and networks, is undergoing cancer survivorship initiatives with Macmillan and has had a positive experience of collaborative commissioning arrangements.
  • He outlined the challenges of the new commissioning arrangements as: financial pressures; fewer people being dedicated to cancer throughout the commissioning pathway; and fragmentation. Anthony said that the changes in the system have slowed down improvements to services at a local level and a lack of national focus on cancer may result in a negative impact.

Paul Chiles, Programme Manager, Transforming Cancer Services for London, NHS England (London Region)

  • Paul is currently working with 28 providers, 32 CCGs and 3 CSUs and is focused on the whole commissioning pathway.
  • Although collaboration is currently positive, the key is to include specifics within commissioning contracts, otherwise “it’s just a nice chat.”

Aarti Chapman, Associate Director of Strategic Clinical Networks and Senate, NHS England (Thames Valley)

  • Aarti said that Bruce Keogh delivered successful Cancer Networks, whereas Strategic Clinical Networks (SCN) are now smaller, leaner and strategic. They are not operational bodies.
  • SCNs’ main focus now is assessing the quality of services, highlighting where it varies and advising on what changes should be made. SCNs are “guardians of the patient pathway.”

Pia Clinton-Tarestad, Head of Specialised Commissioning, NHS England

  • Pia began with how we have experienced a huge change in commissioning arrangements and the way specialised services are now commissioned should put a stop to a ‘postcode lottery’ for these services. NHS England is working with Cancer Research UK to develop the vision for radiotherapy.
  • The current challenge is the ability of the new system to deal with local needs and be locally responsive. Meanwhile, the pace of change at a national level is slow.
  • We need stronger links between NHS England, CCGs and Local Authorities – with flexibility also built into the system.

Katie Norton, Director of Commissioning, NHS England (East Anglia)

  • We have a lot to build on, but there are a lot of tensions. It is difficult to manage the complexity of the new arrangements. Furthermore, she said, it is unclear who is accountable for quality of services at a local level.


Workshop: How can we ensure that research is embedded across the domains?

Sharmila Nebhrajani, Chief Executive, Association of Medical Research Charities

  • Sharmila outlined the areas in which public research is funded by disease and project type, but highlighted that although the majority of clinicians think research is important, fewer believe it is important for them to be involved.
  • She would like patients to be offered opportunities to be involved in research (and self-refer), for all staff to see the importance of research and for the NHS to conduct quality research and adopt new treatments.
  • Sharmila concluded that whether you have access to a trial should not be a matter of luck and that there is more to be done to ensure systems support the good work already underway.

Dr Karen Groot, Head of Programmes and Evaluation, National Cancer Research Institute (NCRI)

  • Dr. Groot explained there has been increasing spend on treatment (clinical trials and infrastructure), early detection and diagnosis and prevention.
  • In 2012/13 there were 750 open trials and 56000 patients participated.

Kate Law, Director of Clinical and Population Research, Cancer Research UK

  • Kate outlined achievements, opportunities and risks in terms of participation in research, welcoming government investment, discussing opportunities for networks of clinicians and funders, as well as the problems of set up times, and the risks related attracting industry and investment.
  • Kate raised the issue of new research methods potentially resulting in less income to the provider.

Prof Dion Morton, Professor of Surgery, School of Cancer Sciences, Queen Elizabeth Hospital Birmingham

  • Professor Morton has seen advances in the last decade, but wants to broaden the base and embed clinical research and relational research, with more professionals taking responsibility to ensure there is not a plateau.
  • He called for more advances in early diagnosis, safer treatment, older people and a better integrated care pathway.

Graham Hampson Silk, Co-Founder and Trustee, Cure Leukaemia

  • Graham believes the NHS trial process is too slow and risk averse and cancer survival could be improved through further trials and testing developed drugs.


Workshop: Cancer across the Domains: Priorities for Domain 1

Amanda Boughey, UK Programme Lead for Be Clear on Cancer, Cancer Research UK

  • Amanda stated that early diagnosis is key to improving cancer survival rates.
  • LUCADA evidence published that week showed statistically significant increase in diagnosis of lung cancer and surgery following the Be Clear on Cancer lung cancer campaign, including a shift towards earlier diagnosis.
  • Every Be Clear on Cancer campaign has shown a shift in awareness, e.g. 57% of people said the ovarian cancer campaign had told them something new about ovarian cancer.
  • Challenges remain, such as how we can fully capture and understand the impact of the campaigns. However, they are keeping the momentum on early diagnosis and bringing primary and secondary care together to improve cancer survival rates.

David Wilkins, Policy Officer, Men’s Health Forum

  • The most common cancers occur more frequently in men than in women and cancer mortality rates are generally higher in men.
  • Lifetime risk rates across all cancers are the same (1 in 3) for men and women. However, if you exclude sex specific cancers then the rate becomes 1 in 3 for men and 1 in 4 for women. If lung cancer is excluded, the rate becomes 1 in 3 for men and 1 in 5 for women.
  • There is no well established biological explanation for the differences in incidence between men and women. There may be some lifestyle choice explanations, such as historically higher smoking rates amongst men, more men being overweight and with less knowledge of nutrition and a higher intake of alcohol among men. Men visit their GP less frequently than women and are also less likely to take up screening.
  • We need to see these differences as a gender inequality and think differently about how we deliver services to men, including male specific interventions.

Mike Birtwistle, Co-founder, Incisive Health

  • Mike believes we can’t save an additional 5000 lives by focusing only on the common cancers – we need to pay attention to the rarer ones too.
  • Early diagnosis opens the door to more effective treatment and support. Late diagnosis is a major issue in England and people commonly delay seeking help.
  • There are variations in diagnosis and treatment and some groups seem to be treated differently, such as older people. For example, the number of people given chemotherapy and surgery for colorectal cancer drops markedly after the age of 55.
  • While there is a strong focus on Domain 1, Mike stressed that all of the domains are important for cancer and we need to ensure they are not forgotten.


Workshop: The Cancer Survivorship Recovery Package: Supporting people affected by cancer

Stephen Hindle, Macmillan Cancer Survivorship Programme Lead, Macmillan Cancer Support

Steve provided an overview of the Survivorship Recovery Package and how it will make meaningful improvements to the quality of life of people affected by cancer. There are three elements to the package:

  • Assessment and care planning – this includes a checklist which is generated into an electronic holistic needs assessment, which will then be generated into an individualised care plan. This will help practitioners understand what people/patients want.
  • Treatment summary and cancer care review – This involves collating treatment information and what the patient and GP understands to ensure that everyone is on the same page. It contributes to seamless care as it draws linkages between GPs, acute care and patients. It also allows cancer care review post treatment and sets minimum standards.
  • Health and well-being event – This involves holding a group event with survivors of cancer. It can be specific cancer conditions or various. Essentially it provides a platform for pabc to discuss and review their experience and provides them with helpful information and contacts to assist them further if need be.

Dr Adrian Crellin, Consultant Clinical Oncologist

  • Dr Crellin provided an overview of Proton-therapy (a new and innovative form of radiotherapy).
  • Proton Therapy has less side effects than radiotherapy, especially in children.
  • It provides more targeted treatment to the cancer site/tumour and minimises damage to surrounding tissues.
  • It is expensive and large equipment, but will substantially improve quality of life.
  • It is linked directly to survivorship and is able to quantify what survivorship costs.

Simon Nancholas, Macmillan Cancer Voice

  • Simon shared his cancer journey with the audience. He was diagnosed with malignant colorectal cancer and his story highlighted significant flaws in the health care system and the consequences of fragmented patient care on patient experience.
  • He detailed that during his hospital stay he had no privacy, it was impersonal and scary.
  • He highlighted the need for communication between health professionals and information sharing about his journey would’ve been extremely helpful.
  • He found that there was a lack of information and a lack of accountability for the different aspects of his cancer journey.

Workshop: Harnessing data and information to improve patient safety and experience

Ellie Sedgwick, Teenage Cancer Trust Volunteer

  • Ellie shared her experience of having had Hodgkin’s Lymphoma and her views on the Teenage Cancer ward in Addenbrooke’s Hospital in Cambridge.
  • Amanda Walsh, Senior Macmillan Nurse Specialist Breast Care, North Tyneside General Hospital, Northumbria Healthcare NHS Foundation TrustBack to top
  • Amanda outlined how her Trust has a strong ethos of patient-centred care. It looks at feedback from patients, including from the National Cancer Patient Experience Survey and listens directly to patients and staff.
  • Patients want high quality care and being treated with care and respect, therefore service improvement is essential, as is holistic care.
  • The Trust has been working with patients on what care was good and what can be better. They got in touch with Breakthrough Breast Cancer to help design a service model and pledge.  It was empowering for the patients and also gave the Trust a plan.
  • The engagement with patients comprised of a questionnaire on key areas (respect, dignity, communication, information, asking questions) and focus groups. Then, Breakthrough processed the data and gave the team back the feedback and put together a plan (for example, for free car parking charges).
  • Another change included alterations to ward rounds: now the team is on the floor earlier to give extended times to certain patients, reduction on waiting times and others.
  • The team launched the service pledge with staff and management. This pledge has allowed them to focus on patient experience, co-create standards and communicate those to patients. This has encouraged transparency and ways to make wrongs right.

Jane Carthey, Human Factors Specialist:

Jane spoke about patient safety. There are five lenses of patient safety:

  1. Past harm as a measurement and monitoring of safety (has patient care been safe in past?)
  2. Reliability (are our clinical systems and process reliable?)
  3. Sensitivity to operations (monitoring safety operations - is care safe today?)
  4. Integration and learning (how do we combine all of these dimensions and feedback to frontline staff to support clinical improvements?)
  5. Anticipation and preparedness (will care be safe in the future? How can we use the info to risk assess?).
This framework is being used by chief nurses to assess where they are on patient safety. Jane said that it's a good reflective tool. It balances perspective on what safety is and how we monitor and measure it, as well as gathering feedback from clinicians.

Dale Rominger, Prostate Cancer UK Volunteer

  • Dale reflected on his experience as a prostate cancer patient and the positive experience that he had when he came into contact with his GP and the teams at the Royal Free Hospital and UCLH.
  • He highlighted that he underestimated the emotional impact of cancer and added that the access to the Clinical Nurse Specialists (CNS) was hugely important.  He observed that his CNS was essential in building relationships to promote integration through the system which reflected positively in his care.

Workshop: What needs to happen now? End of life care and the Liverpool Care Pathway

Imelda Redmond, Director of Policy and Public Affairs, Marie Curie

  • She began by setting the context for the session, saying that there was no chance of a ‘Liverpool Care Pathway mark 2’ given the stigma associated with it. Whatever replaces the Liverpool Care Pathway cannot be a pathway but instead be common sense principles of care that apply for all conditions.
  • There was discussion about how illness or dehydration in the frail or elderly can look like dying and clinicians need to ensure the diagnosis is correct. Within this openness and information sharing are important.

Ian Leech, Campaigner

  • Ian Leech spoke about the experience of his daughter Mel and the wet sponges which helped her with dehydration.
  • He highlighted how much more funding research receives that care.

Prof Rob George MA MD FRCP, Cicely Saunders Institute, King’s College London

  • He said that doctors think people only die when the doctors stop treating them. He also suggested that people feel that talking about death accelerates it. He concluded his point saying that staff need more support to talk about death.
  • A question was asked about Government funding for the hospice movement and their efficient delivery of care
  • He spoke about fundraising, saying that there is a great deal of societal disinterest but that charity funding changes this disinterest. He said that Government should provide at least a basic level of care and highlighted that less than 1% of research funding is spent on care.
  • Prof George said it is important to debrief, reflect and learn lessons from previous cases. He said that accountabilities and competencies must be increased. Finally he suggested that diseases cannot be conquered by that we must focus on transcending disease.

Glyn Davies MP

  • He said that although investment is new and exciting, improving the old is less exciting and dying is not a ‘sexy’ issue.
  • The question was posed on how we value ‘being a nice person’, particularly for doctors.
  • Glyn said that the doctor must act as a rational person taking decisions in collaboration with patients.


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