Britain Against Cancer 2014

Simon Stevens began his address by congratulating the APPGC on 16 impactful years. He explained that he wanted to take stock but also consider the future – noting that the need for change had never been greater.

In terms of progress he pointed to cancer survival rates and patient experience, but highlighted there was an ambition to do better. In relation to prevention he outlined the need for rapid progress in reducing smoking and alcohol consumption, he also placed an emphasis on obesity and physical activity. Progress was also needed on improving early diagnosis and continued improvements on access to treatment.

He was pleased to announce in relation to early diagnosis that from April the Delivery Dashboard will include 1 year cancer survival rates as an indicator.

He also spoke about the importance of end of life care and referred to a visit to a hospice in Teeside where he was struck by the compassion and love patients were surrounded by through this successful model where staff worked in partnership with patients and their carers.

He concluded by announcing NHS England would establish a taskforce to develop the next stage of a cancer programme, which would look to 2020.

Mr Hunt thanked John and the sector for their sustained efforts on cancer.

He noted he felt there was a paradox – we have some of the best research and cancer doctors in this country, but we still have some of the lowest survival rates. He said he was proud of the NHS, but we need to do better.

He then outlined the progress the government had made, including investment, in cancer care and treatment. He reported estimates that around 12,000 more lives a year will be saved through these and other interventions.

Hunt set out the four pillars that represent the Government response to NHS England’s Five Year Forward View and related them to cancer care. These were that a strong NHS needed a strong economy; the need for new models of care; the importance of innovation; and the need to get the culture in the NHS right so people were treated compassionately but there was also transparency.

He concluded by reiterating that there had been progress over the last 4 years but going forward there needs to be a change in the models of care and culture.

Speaking at his fifth Britain Against Cancer, Andy Burnham laid out Labour’s 10 year plan for health. He announced policies to improve the entire cancer journey, from prevention through early diagnosis, treatment, living with cancer and end of life care.

Burnham began by pledging a series of measures to improve cancer prevention, including introducing plain packaging for tobacco products and putting limits on the amount of fat and salt in children’s food.

Burnham went on to pledge Labour would support GPs to spot signs of cancer, and ensure better access to diagnostic care, funded by a tobacco tax. Labour would also make it easier for people to see GPs, run more public awareness campaigns, and ensure no child leaves school without knowing how to check themselves for signs of cancer.

On treatment, Burnham then announced a Labour Government would replace the Cancer Drugs Fund with a Cancer Treatment Fund to ensure treatments besides drugs were treated equally. He also announced Labour would ensure people were treated compassionately, and its focus on prevention and early diagnosis would give everyone the ability to navigate the system, and ensure all patients were treated equally with dignity and respect.

On living with cancer and end of life care, Burnham finished his proposals by stating older people with cancer would be given a single point of contact to coordinate their care and be an advocate for them in the system. Labour would also roll out the recovery package and end of life care would be free on the NHS.

Sean Duffy used his first speech at Britain Against Cancer to divulge NHS England’s plans for cancer care, their ‘Blueprint’ for the next five years. Duffy revealed they plan to tackle the challenges of late diagnosis; access to treatment; supporting people living with and beyond cancer; and the inequality of treatment for older people.

During his speech, Duffy revealed statistics that showed an estimated 8000 more people could survive for five years after a cancer diagnosis if everyone proactively works to improve early diagnosis.

Duffy also promoted the importance of radiotherapy for improving mortality figures, ending variation in access to chemotherapy, and treating the problem the Cancer Drugs Fund is a symptom of – how drugs are created and licensed.

Duffy also used Britain Against Cancer as an opportunity to discuss data access, lamenting that there is no point having the best system of cancer intelligence collection if we are not using it. He called on the public to explain that they trust the cancer community and are happy for them to do what is best for the public and make use of the best data in the world.

Delegates had the chance to question a panel of experts in cancer care, led by John Baron MP. The panel consisted of Professor Julia Verne, Public Health England, Professor Nazneen Rahman from the Institute for Cancer Research, and Geoff Thomas, a former cancer patient and patron of Cure Leukaemia.

The panel discussed the importance of high quality and timely information for patients surrounded by their family and carers. They also stated the importance of early and effective engagement with patients; the importance of ventures such as Care. Data; addressing cancer inequalities in survival rates and access to treatment; and improving access to end of life care.

When asked to share their one wish for the future of the NHS the panel hoped to see advances in genomics, clinicians given more freedom to offer options to patients including clinical trials, and to reduce social injustice and inequalities in cancer care.

The session asked if the NHS can continue to invest so heavily in cancer drugs, if pharmaceuticals are exploiting the politics of cancer, and if the government is doing enough to get prices down, or focussing too much on cancer at the expense of other conditions.

Barbara McLaughlan, Head of External Affairs, Novartis

Barbara began by outlining what determines the price of medicines, which includes value for patients, meeting unmet needs, costs, and shareholder expectations.

She described the Cancer Drugs Fund as a safety net, stating NICE often rejects drugs they are uncertain about, for example because they do not have mature data or are too expensive.

Barbara then went on to criticise the new Cancer Drugs Fund processes for not being robust enough or transparent, causing further uncertainties that mean the Cancer Drugs Fund is no longer a solution to the problem of funding cancer drugs either.

She believes the NHS needs a long term solution focussed on outcomes and the Government should support the industry to find a suitable solution.

Meindart Boysen, Programme Director, NICE

Meindart outlined the reasons why NICE struggles to approve drugs in the same way as the Cancer Drugs Fund does, including that it is much smaller than the Cancer Drugs Fund, and that the judgement of medicinal value has become so political it is no longer within NICE’s control.

Meindart believes the solution is to only use one appraiser, better support evidence providers early on, and create more relaxed regulations about evidence to create more flexibility for dealing with drugs NICE is uncertain about.

Leela Barham, Founder, Leela Barham

Leela believes incentivising research and development will be important for bringing drugs to the market in the future, stating value is not just about economics, but outcomes and benefits to patients.

She also believes improving NICE could make the Cancer Drugs Fund unnecessary.

Mike Birtwhistle, Founding Partner, Incisive Health

Mike considers the Cancer Drugs Fund to be a compassionate care success story. However, he reiterated that the Cancer Drugs Fund is a symbol of political will.

Sasha Daly, Teenage Cancer Trust

Sasha began by explaining the importance of patient feedback. For example the National Cancer Patient Experience Survey (CPES) has highlighted national variations in diagnosis, communication and understanding, and treatment choices. Sasha warned the results may be based on perception, but the findings still need to be addressed.

Sasha was also particularly concerned that young people may be invisible in the health system, and she wants young people to be included in measures.

Juliet Bouverie, Macmillan Cancer Support

Juliet reported on the link between patient experience and staff experience in light of Macmillan’s General Election ‘dignity and respect’ call. She stated patient experience is still not prioritised compared with clinical outcomes and patient safety.

Juliet personally saw how hard culture change can be when involved in patient experience at UCH.

Juliet set out the six key barriers to change from the recent report: learning and development skills; support for all staff; poor staff health and wellbeing; time with patients; poor management; not feeling empowered to raise concerns; and bullying & harassment.

Juliet also explained the recommendations for political parties, Trusts, the Department of Health, NHS England and Health Education England, including prioritising supervision, reflective practice, Schwartz Rounds, and empowering staff through 8 behaviours in the Values Based Standards.

Neil Churchill, NHS England

In response to the other speakers, Neil stated Schwartz Rounds are now being used in over 100 areas, CPES data is relevant to clinical teams, and inpatient survey reporting in May will include children and young people.

He also emphasised the importance of professionals introducing themselves to patients (which happens 70% of the time) while 60% of patients report being called by name they want to be.

Neil suggested there should be more financial payments based on what patients say. He rates the Values Based Standard and wants to put staff experience in the Outcomes Framework. He also mentioned the importance of a learning culture, values and behaviours, commissioning focus and new models of care, as well as raising awareness about effectiveness long term.

He also questioned how difficult it could be for those areas who are stuck when the average is rising, putting staff under pressure.

Louise Stimpson, Monitoring and Evaluation Manager, Marie Curie Cancer Care

Louise presented some research which was brought together by Marie Curie Cancer Care, which highlighted that it can be very difficult to measure preferences for end of life care.

She reported that when the general public is polled, their responses are often quite different from people who are polled when they are already receiving palliative care. For example, people who are not currently in need of palliative care often rate place of death as very important, but when people are asked towards the end of their life this is less of a priority.

She suggested that we must get to a stage where discussions about choice at the end of life can cover all preferences, and not just place of death.

Carol Bridge, Marie Curie Expert Voice

Carol shared her experience of caring for her partner at the end of her life.

She highlighted that choices about end of life care should be flexible. Her partner initially wanted to die at home, which she told her palliative care nurse on receiving a terminal diagnosis. However, she later changed her mind and chose to die in a hospice. Carol feels that this was the right choice, and enabled her to die well.

Carol believes that we should have more open discussions about preparing for death, perhaps even before people become ill. She did not have any understanding of what would be available to them when they started the process, and found accessing some services a struggle.

Claire Henry, Chief Executive, National Council for Palliative Care (NCPC)

Claire is currently chairing a national review on choice at the end of life.

Claire also noted that systems for choice need to be flexible, as people can change their mind or find options overwhelming at first. She believes that wishes and preferences should be discussed and solutions found, rather than just offering choice.

She stated that barriers to choice include patients being seen as a list of symptoms, rather than as a person; barriers for people with poor health literacy; and the high cost of some options. In order to rectify this, people need to be able to have more open, honest conversations and access to adequate joined-up services.

She also spoke about the importance of addressing spirituality for people who are coming to the end of life, and believes that all conversations about choice should be holistic and address the needs of the individual.

Emma Greenwood, Head of Policy Development, Cancer Research UK

Emma spoke about needing to consider research more broadly. For example, needing to consider access to patient data and the state of the NHS.

She suggested that data is important because:

• It gives patients better information on diagnosis and treatment options
• Helps inform commissioning and performance audits
• Assesses new treatment options
• It is a source of material for research, for example in clinical trials, using data in real time and population data.

Emma also notes the importance of explaining:

• Why data is being collected
• What it’s being used for
• What the benefits gained from using data are.

Chris Carrigan, Director of the National Clinical Intelligence Network and Information Services, Public Health England

Chris’s two main points were about the data that is available and that isn’t available; and what it is used for and who it’s given to.

Chris noted that surgical data is accessible, but not in real time and that HES data can be a challenge.

He also stated there is a lot of national data available, but its being done a disservice because nothing is being done with it. Stressing that access to services and treatment data is extremely important and data access and release are the key issue.

Hilary Stobart, Independent Cancer Patient Voices

Hilary spoke about data access from a patient perspective. She suggested that patients and the public want to help, but there is confusion about how data works.

She suggested what was needed was:

• More work on public awareness, and ensuring materials are not misleading
• Information provided and sign-posted
• Data governance and security to be robust and analysis reliable, with data experts included in decision making
• All results published, not just successes so lessons can be learnt and shared 
• Lay involvement embedded everywhere where decisions affect patients and public.

Dr Cathy Burton, Joint National lead GP Advisor, Macmillan Cancer Support

Cathy welcomed attendees and noted the theme of early diagnosis in the speeches the delegates had heard in the Great Hall that morning. She mentioned the uncomfortable comparison between European and UK cancer survival figures.

She said there was growing recognition from decision makers as to the importance of improving outcomes through early diagnosis.

There is more to do on early diagnosis along each step of the cancer pathway, and this session would provide an opportunity to consider those issues.

Martin Todd, Chief Executive, Men’s Health

Martin stated that men were more likely than women to die from all non-gendered cancers. He explained while men are much less aware of the symptoms of various diseases and conditions, when they do recognise symptoms they are only a little less likely to visit their GP. Various academic studies actually show that men don’t tend to present later than women.

However, there is a problem with screening, as uptake for cancer screening is lower amongst men than women. Men are also less likely to engage in preventative measures including health checks.

In order to combat this, men need tailored information – e.g symptom awareness, which when targeted at men can work. We also need to ensure health services are accessible to men; tackle the stigma around certain cancers amongst men; and drive the uptake of screening measures and health checks.

Sam Hiom, Director of Early Diagnosis and Cancer Intelligence, Cancer Research UK

Sara welcomed the commitment of both political parties, and NHS England to the importance of early diagnosis. However, she noted that it’s not enough just to diagnose early, we also need to give people access to the best possible treatment.

There are still large variations in stage at diagnosis across England. As well as saving lives, if cancers were diagnosed earlier significant savings on treatment costs would be made – e.g £24 million on colon cancer.

In order to improve early diagnosis we need to achieve early presentation, optimise clinical practice and invest in research, evaluation and monitoring. There are already a number of success stories across these themes, including the Be Clear on Cancer campaign; Clinical Decision Support tools for GPs; the ACE Programme; and NAEDI funded research.

Sarah Culkin, Senior Correspondent, HSJ

Sarah outlined the development of commissioning specialised cancer services by NHS England and the problems that NHS England were trying to address through their approach to commissioning specialised services.

John Murray, Director, Specialised Healthcare Alliance

John set out the background to the current approach to specialised commissioning and the reasons why specialised commissioning had not been as successful as hoped.

He outlined a three tier approach to service commissioning which took into account the number of patients requiring each service. He argued that there was a role for co-commissioning involving both NHS England and Clinical Commissioning Groups but that there were challenges for co-commissioning around budget sharing and cost saving.

He argued that NHS England should keep specialised commissioning where it was appropriate for the patient group.

Michael Macdonnell, Head of Strategy, NHS England

Michael summarised the key messages from the recently published NHS Five Year Forward View. The key messages included: the challenges and opportunities faced by the NHS; the increased emphasis on preventing poor health; different ways of organising care; and the enablers to support the delivery of new models of care.

He finished by posing questions for the audience about what they wanted to achieve in terms of cancer care.

Jeremy Whelan, Medical Oncologist and Chair, National Clinical Reference Group for Sarcoma

Jeremy spoke about the challenges of treating sarcoma and how sarcoma services have been commissioned.

He emphasised the need to have a national strategy for commissioning specialised sarcoma services and the importance of the Clinical Reference Group in shaping the delivery of effective and appropriate sarcoma services.

Lauren Shute, Patient representative, Teenage Cancer Trust

Lauren set out her experiences as a patient after she was diagnosed with Hodgkin’s lymphoma. In particular, she set out her experiences as a teenager on a ward shared with mostly baby and toddler patients and the importance of reflecting on the different needs of baby, child and teenage patients.

Lauren spoke about the physical and mental battle she faced as she fought cancer and the importance of supportive, holistic care from health professionals.

In the question and answer session, the presenters debated a number of important points around commissioning including the need to be clear about the difference between specialised commissioning and co-commissioning; the importance of supporting CRGs; the role of commissioning in removing unwarranted variation between CCGs.