Britain against cancer 2015

Cally Palmer outlined her priorities in her new role as National Cancer Director. She said that she would be looking at connecting up pathways and ensuring that patients get access to services as quickly as possible. She highlighted the importance of looking at prevention, and putting the patient at the centre of everything. She also spoke about the importance of using data, particularly on patient experience and quality of life.

She said that it would be important to use resources better across boundaries and focus funding where it can have the biggest effect. She also spoke about the Cancer Vanguard and using the learning from that to improve services across the country. On data, she stressed the important role of the new Cancer Dashboard, and presented a prototype version of what the new Dashboard would look like.

Heidi Alexander set out Labour’s plans on cancer. She began by welcoming the England Cancer Strategy, and Cally Palmer’s appointment as the new National Cancer Director. She said that it would be important to translate the strategy into an action plan, and said that Labour would be holding Government to account on its delivery.

She highlighted the importance of prevention, and said that good progress had been made in reducing smoking rates. However, she said that not enough had been done by the current or previous governments to tackle obesity or alcohol abuse. She called on the Secretary of State to set out how he would be addressing these issues, and also commit funding for the Be Clear on Cancer campaigns.

She ended by highlighting the importance of patient experience, not just during treatment but for people who are living with and beyond cancer as well.

The Secretary of State opened the conference by stating that this was his fourth keynote at the event, and that it was an important way of engaging with patient groups. He outlined where progress had been made on cancer care over the last year, highlighting improved survival rates and more people having cancer tests. However, he said that more needed to be done in key areas to ensure that we did not continue to lag behind Europe.

He said that there have been two significant events this year – the launch of the Independent Cancer Taskforce in January, and the funding settlement for the NHS announced by the Chancellor in the Autumn Statement. He said that the latter would enable the Government to implement to Cancer Taskforce Report, and reiterated commitments on implementing the four week wait from referral to diagnosis, and that all cancer patients will receive a full tailored recovery plan. He said that more commitments would be coming in the following months once more was known about the funding settlement.

He also spoke about the importance of data and announced that NHS England would strat measuring on a quarterly basis the number of cancers diagnosed at stage one and stage two, as well as the number of cancers diagnosed in emergency care. He said that these indicators would be important in helping the NHS and the Department of Health understand whether the improvements set out in the England Cancer Strategy.

John Baron facilitated a discussion between Professor Sean Duffy and Sir Harpal Kumar. The session opened with each giving their views on what the key priorities should be for the implementation of the England Cancer Strategy, following which the session moved on to a discussion about early diagnosis,  workforce and patient involvement. 

Sir Harpal Kumar highlighted the importance of multi-disciplinary centres in improving early diagnosis, particularly for patients with rarer cancers, whilst on workforce; Professor Sean Duffy spoke about achieving a balance between national oversight and empowerment of local health economies. On patient involvement, Sir Harpal Kumar said that Cancer Alliances would be the key vehicle for patient involvement and that patients “would have as important a role [as clinicians]” and that they would have a role in holding local health systems to account.

An expert panel discussion was held in which the audience heard from Dr Pauline Leonard, Consultant Medical Oncologist at Whittington Health, Nicole Larkin, patient representative, Chris Carrigan, Head of National Cancer Intelligence Network, and Hilary Newman, Chair of National Voices.

The panel discussed a wide range of questions submitted by the audience including the role of primary and secondary care in improving early diagnosis, access to treatment, health inequalities and the role of data.

This workshop was an opportunity for representatives from research and education to discuss the controversy surrounding e-cigarettes and the impact of HPV.

Dr Lion Shahab – Senior Lecturer in Epidemiology & Public Health, UCL

Dr Shahab opened by setting out the controversy surrounding e-cigarettes and vaping. He explained they were controversial because people see them as ineffective for stopping smoking, as potentially harmful in the long term, and as a gateway towards renormalisation of smoking. He then highlighted research which contradicts these concerns by showing vaping may be as effective as Nicotine Replacement Therapy (NRT).

Lion then explored potential regulation for e-cigarettes, and argued it was bad for choice and competition because only big tobacco companies would be able to afford to pay fees.

Professor Margaret Stanley OBE- Director of Research, Department of Pathology, Cambridge

Margaret began by explaining that there are 150 types of HPV, and 13 cause cancer, with types 16 and 18 being the most dangerous. Nearly all cervical cancers are caused by HPV, but it also leads to head, neck, anal and vulva cancer. Women eventually become immune, but men do not have that natural immunity. With cases of pre-cancer rising, which take 20 years to become cancer, HPV will become a big problem in the future.

Margaret then stated that the vaccination programme has been very effective in girls, with over 85% take up in the UK. However, the vaccine is only for herd protection, rather than herd immunity because it only protects women and subsequently their sexual partners, but not homosexual men. If boys and girls were both vaccinated this would ensure herd immunity to HPV.

Dr Rachel Thompson- Head of Research Interpretation, World Cancer Research Fund

Rachel stated recent WCRF research into processed and red meat finds they are both probably carcinogenic. She focussed on the comparison between meat and worse carcinogenic products, with research suggesting there would be 4,000 less cases of cancer if people ate very little processed meat, but there would be 24,000 fewer cases of cancer if people kept to a health weight and stopped drinking alcohol.

Following the presentations, delegates discussed the seriousness of each issue and were then invited to prioritise one issue to take forward that would have the most impact. Delegates voted that expanding the HPV vaccination programme to boys was the most important issue for them, and it should be taken forward by the APPGC.

During this session, delegates discussed the continued need to prioritise early diagnosis efforts especially in relation to people displaying symptoms of less common cancers as well as people from more deprived areas.

Julia Ozdilli– Senior Early Detection Lead Transforming Cancer Services Team for London

Julia began by detailing the mixed picture when it comes to population and services in London and made note of the fact that around 27,000 people were being diagnosed each year with cancer.

She then outlined the aims of the Transforming Cancer Services Team (TCST), established in 2014. The aims covered the whole of the National Awareness and Early Diagnosis Initiative pathway, including achieving earlier presentation, improving GP access to diagnostics and optimising clinical practice and research.

Julia discussed the methods the TCST used in order to achieve the goals of achieving earlier presentations and improving GP access to Diagnostics. For the former, Julia described how the TCST were looking at introducing primary care education and local enhanced ‘Be Clear On Cancer’ (BCOC) campaigns alongside an assessment of Joint Strategic Needs and a Bowel Cancer Task and Finish Group.

In conclusion, Julia stated that in order to improve the access GPs have to Diagnostics, the TCST was commissioning both NG12 Direct Access Diagnostics and London gynae, lung and colorectal ED pathways as well as reviewing endoscopy therapy and piloting the MDC model (ACE).

Nicola Barnstaple- Programme Manager, Detect Cancer Early Scotland

Nicola starting by describing the challenges facing the Diagnose Cancer Early (DCE) programme in Scotland. She spoke about how there has been an increase in cancer incidence and predicted an increase in cancer diagnoses from 30,500 in 2008-2012 to over 40,000 in 2023-2027. Nicola highlighted the impact of health inequality, noting that mortality rates from cancer in the most deprived areas of Scotland are around 1.5% higher than in the least deprived areas.

Nicola then discussed ways in which the DCE programme was focusing on increasing bowel screening uptake, such as the through the introduction of the faecal immunochemical test (FIT) to the Scottish Cancer Screening program set.

Nicola then concluded by sharing her top tip for developing early detection messaging, policy and service delivery which was communication and engagement with stakeholders.

Karen Fitzgerald- Programme Director, ACE, Cancer Research UK

Karen opened by stating that the ACE programme would accelerate, coordinate and evaluate learning in order to achieve the earlier diagnosis of cancer.

She then discussed how the ACE programme had been piloting a range of different approaches with those who are focused primarily on screening reaching out to groups that are commonly missed, as well as specifically targeting groups that are at a high risk of cancer. Alongside the piloting of different approaches, Karen also set out how the ACE programme had been looking at streamlining pathways in order to tackle delays in the reporting of images and in order to eliminate unnecessary appointments.

Karen ended by sharing a desire to see the Government take efforts to make using data simpler, adding that the NHS should be generating and utilising data on a daily basis in order to drive progress in all aspects of healthcare.

This workshop was an opportunity for a representative from NHS England and health experts to discuss the state of drugs in cancer care.

Rachel Cashman- Head of Clinical and Scientific Policy and Strategy at NHS England

Rachel spoke of how her portfolio had grown due to the increasing challenge of access to drugs in NHSE. She described the Cancer Drugs Fund as a “sticking plaster” which functions to focus the access to drugs debate politically.

Rachel then suggested that a consultation process would help remove the politics from the debate and allow for forensic thinking about drugs. She highlighted that there was no mechanism for moving drugs if they were not found to be of clinical value and that it was not sensible to have a single pot of money for innovative drugs. According to Rachel, the NHS knows we need a more streamlined system that provides transparency.

She then described how the National Institute for Health and Care Excellence (NICE) would in the future be able to deliver a “maybe” clinical promise in the event of more evidence being required. Rachel presented these changes as fitting into a new focus on “accelerated access to treatment.”

Rachel concluded by stressing the need for an honest conversation about drug pricing, with the NHS ensuring the best value for taxpayers’ money by thinking about is commissioned and decommissioned.

Leela Barham– Independent heath economist and policy expert

Leela described how Breast Cancer Network and Prostate Cancer had commissioned a piece which compared drug policies in the UK and other countries, such as Australia and Canada. It revealed a mixed picture on how the UK compares with the rest of the world and that increasing the involvement of patients was key.

She then set out the proposals for a new Cancer Drugs Fund which would not let every new drug through and address confusion over who makes the final decision. Leela queried the role companies would play.

Leela finished by setting out that patients needed to be supported to make representations and pharmaceuticals needed to come up with a reasonable price offer early in the process in order to avoid a standoff. Furthermore she argued that the National Institute for Health and Care Excellence (NICE) and NHSE should be reasonable about the level of evidence that needed to be presented.

Stuart Watson– Prostate Cancer patient expert

Stuart stated that in the case of prostate cancer, drugs are usually administered at the advances stages of the disease and that there were problems with access to the drugs. He described how he had worked previously with NICE on behalf of PC UK and asked whether regulatory bodies were part of the problem rather than part of the solution.

Stuart continued by discussing the inequalities of access between and within the four nations of the UK. He described NICE as rigorous, able to make clear decisions about public money and involving patients throughout the process. However, Stuart argued that NICE could have become a victim of its own perfection with alternative forms of evidence rarely being accepted and patient involvement can numerically feel tokenistic.

Stuart ended by arguing that NICE should increase the number of patient representatives involved during the evaluation process and recognise the validity of the evidence provided by patient representatives rather than relying too heavily on clinical evidence.

This workshop was an opportunity for representatives from charities, NHS England and those affected by cancer to discuss quality of life and the need to measure it.

Rebecca Nash- Head of Evidence, Macmillan Cancer Support

Rebecca opened the session by providing some context on quality of life and why it is crucial that we measure it. She mentioned the recent Cancer Strategy, which included a recommendation on the creation of a quality of life metric. This is necessary because although more people are living longer after a cancer diagnosis, unfortunately they are not always living well.

She continued by stating that the challenge is shifting to helping people not just survive cancer, but to live with it as a long term condition, and live well. We are not yet good enough at measuring this, and using information on quality of life to plan services. Therefore, Rebecca concluded we need to come up with a feasible, realistic and relevant way of measuring quality of life.

Claire- Teenage Cancer Trust Patient Representative

Claire shared her experience of being diagnosed with cancer. She mentioned that while she was relieved to know what was wrong, she became anxious, depressed and struggled to care for her young son when her treatment started.

Claire noted that she had more problems with her mental health than physical symptoms during this time. She received support and treatment through the Teenage Cancer Trust during this time, and was supported by a TCT nurse which helped alleviate some of her concerns.

Claire concluded by saying she has found having a good support network and events such as the Teenage Cancer Trust’s “Find Your Sense of Tumour” helpful in getting her life back on track.

Alice- Macmillan Cancer Voice

Alice began by saying she was diagnosed with breast cancer following routine screening. She described herself as normally a healthy, happy person but found that her cancer diagnosis had a huge impact. She had a supportive family, but began to think very negatively and feel depressed – which she described as having more of a negative impact than her cancer. Alice was also made redundant during this period.

Alice described her Macmillan nurse very positively, and said she helped to re-build her confidence and enabled her to get back on track. Alice is now working at Macmillan and thinking positively about the future.

Matt Bassett, Teenage Cancer Trust

Matt began by sharing information about how the Teenage Cancer Trust (TCT) has engaged children and young people living with cancer and cancer professionals, to develop services which meet their ongoing needs. One particularly poignant quote from a Teenage Cancer Trust nurse said that because of the lack of follow up care, she felt that “We save young people with cancer from drowning, but don’t teach them to swim.”

Matt then argued that to address this, the TCT has developed the Way Forward Programme, a 2-day residential course featuring a mix of education, workshops and goal-setting sessions. Following positive feedback during the piloting stage, there will be 6 programmes running across different regions in the UK in 2016. The TCT is also pushing for every young person with cancer to have access to a full teenage and young person specific recovery package by 2020.

Dany Bell- Treatment and Recovery Lead, Macmillan Cancer Support

Dany focused on the use of the Macmillan developed tool, the Holistic Needs Assessment (HNA). This assessment enables people with cancer to raise concerns with a healthcare professional who can then signpost them to support services, and it could be used to support the development of a quality of life measure.

Dany shared the benefits that people with cancer receive from an HNA, such as it enabling patients to seek help for their needs and reassuring their concerns.

Dany then shared that data-which is collected from completed HNAs- shows that around 80% of concerns are physical or emotional, with physical the largest percentage, while emotional and family concerns are having the highest impact on the people’s lives.

Professor Sean Duffy- National Clinical Director for Cancer, NHS England

Sean started by saying that the session had provided him with an epiphany- that the quality of life measure is about a way of life, not just a single metric.

He reflected on his own medical training and noted that he was never taught to consider what was important to patients as a priority. One measure of quality of life will not address this, but instead should be seen as the first step in the right direction, in leading to healthcare professionals asking the right questions.  He also noted that the HNA could be a very useful tool in enabling this, and suggested further use of the evidence Dany outlined to inform the development of the quality of life measure.

Sean also noted that this was an opportunity to attach value and currency to quality of life, and raised a few keys points of his own on what the measure should cover. In particular he noted the importance of understanding the needs of carers and families, the need to understand how quality of life is impacted by care at transition points and the importance of clinicians personalising packages for patients.

This workshop was an opportunity for representatives from charities, the public sector and those affected by cancer to agree on priority recommendations for the All Party Parliamentary Group on Cancer to take forward on the use of cancer data in the healthcare system.

Adrienne Morgan, Independent Cancer Patients’ Voice (ICPV)

Adrienne spoke about how data access issues caused by the split in databases between HSCIC and Public Health England (PHE) have been largely solved and that the current big issue is the negative public attitude to sharing data. She then used the findings of a recent survey by 38 Degrees as evidence that most people feel medical records should be used for life-saving research if private companies are not involved.

Adrienne referred to a National Cancer Intelligence Network (NCIN) workshop with patients about data sharing, for which the main outcomes were that patients should be in charge of their own data and they need to know how and why their data is used. She concluded by recommending the involvement of patients in the committees that make decisions about how data is used.

Martin Severs, Health & Social Care Information Centre (HSCIC)

Martin began by highlighting the HSCIC’s register, which tells people where their data is used and by who and that they agree a data sharing contract with applicants before they release data.

He then touched on the fact that the Independent Group Advising on the Release of Data (IGARD) is due to replace the Data Access Advisory Group (DAAG) in making decisions about releasing data. They will have patient and academic representation and be more independent of the HSCIC. Even when fully informed, people have different opinions on data access and so there is a need to get the balance right between sharing data and people’s privacy concerns.

Martin then ended by highlighting an advantage of sharing data, in that NHS Improving Quality uses data to check and compare the quality of services.

Michael Chapman, Head of Cancer Intelligence and Impact, Cancer Research UK (CRUK)

Michael outlined the ways in which CRUK and others could support the HSCIC to release data in a safe and secure way. Firstly, they can demonstrate how important data is to our understanding of cancer and how to develop new treatments and monitor/evaluate NHS services. Secondly, they can make sure HSCIC and PHE are properly funded, with their work supported.

He then argued that there is more data than ever and the public expect more data to be used and for it to be kept safe. There is a need to create something trustworthy and then sell the importance of using data publicly. Improving public communication on data is going to take time and should not be rushed.

Michael concluded by arguing that while we have to respect Type 2 objections, we should be careful about how we are interpreting what we think people objected to when we honour them. A fuller debate is needed.