By Duleep Allirajah – Head of Policy
The cancer story is changing. More people are being diagnosed with cancer than ever and, as treatment has improved, more are surviving the disease and living longer with it. There are currently 2.5 million people in the UK living with cancer; this number is set to rise to 4 million by 2030. But improved survival rates don’t mean that every person with cancer is ‘cured’, nor does it mean that the issue of cancer is ‘fixed’.
The changing cancer story presents huge challenges for a health and social care system which, after a five-year public spending squeeze, is already under tremendous strain. So, how should the NHS tackle these challenges? This is the question which the independent cancer taskforce, assigned by NHS England to develop a new cancer strategy for England by this summer, is currently trying to answer. It’s an historic opportunity to shape the cancer agenda for the next five years and, here at Macmillan, we’re working to determine how the strategy could be truly transformational for people affected by cancer.
Firstly, it’s vital that the new strategy articulates an ambitious vision for cancer care. Fifteen years on from the publication of the NHS Cancer Plan for England, it’s a scandal that despite being better than ever, our survival rates still lag dangerously behind the best in Europe. If we are serious about closing the outcomes gap we will need to boost diagnostic capacity, reduce the proportion of patients diagnosed in A&E and reduce ‘system delays’ from GP referral to treatment. We also need to tackle the survival rates for patients aged 75 and over which still lag behind the best European countries. If you’re aged 75 or over and get diagnosed with lung, stomach, kidney or ovarian cancer in England, your chances of surviving at least five years are lower than in any region of Europe, including Eastern Europe[i].
But as more people survive, more support is needed to help them get their lives back after treatment. This means preparatory rehabilitation and ensuring that patients have access to treatments which have less debilitating consequences. It also means addressing the lack of aftercare services. Two in five cancer patients who need support from health and social care services after they leave hospital say they are not given enough[ii] and at least one in four people suffer ill health or disability after treatment[iii]. The health system needs to help people manage the long-term physical and psychological after-effects of treatment. It needs to support them to get back to work and to make the lifestyle changes – such as becoming more physically active – that we know can reduce the risk of recurrence or ill health.
These changes require big shifts in clinical practice and care pathways. They require the roll-out of a set of interventions – the ‘Recovery Package’ – to ensure that people with cancer aren’t abandoned when curative treatment finishes. This means reforming cancer follow-up by replacing the old medical-only follow-up with a more ‘whole person’ approach, which combines remote monitoring, support for people to self-manage and rapid re-entry if symptoms recur. In order to incentivise these shifts, Macmillan is advocating the development of new high level ‘quality of life’ outcome measures. Because we know what good cancer care looks like: good cancer care is having the best possible chance of survival as well as the best possible quality of life.
And there is still some way to go in ensuring that people with cancer have this quality of life through a positive experience of the care they receive. Sadly, one in five cancer patients say that they felt treated like a set of symptoms rather than being recognised as a personiii while half of NHS staff have received no training on how to deliver good patient experience[iv]. In order to foster a culture of compassionate care, we need to establish feedback loops to make sure that patients are routinely asked to rate their experience of and that clinical staff have dedicated time to reflect on that feedback. In the interests of transparency, we’d also like to see the publication of how each hospital trust performs on patient experience. The National Cancer Patient Experience Survey has been an invaluable improvement tool for driving service improvement, but it needs to evolve. Currently, for example, the survey only measures the experience of inpatients but, as most people receive treatment as outpatients or day cases, we’d like to see it focus on how patients are being supported out of hospital, as well as at key transition points, for example, at the time of hospital discharge or at the end of treatment.
While we want the cancer strategy to focus on improving survival and helping people lead healthy and fulfilling lives after treatment, we shouldn’t forget that over 145,000 people die of cancer every year in England and Wales[v]. It’s still the case that the preferences of people with cancer for how and where they receive care at the end of life are not being met. We know that 73 per cent of people with cancer would prefer to die at home[vi], but only 30 per cent are currently able to do so[vii] because they don’t have the support to make this happen and there is only patchy provision of round-the-clock community services. Having people die in hospital against their wishes is not only morally wrong but it represents a waste of NHS resources. We estimate that the NHS spent £137 million on hospital care at the end of life for cancer patients who wanted to die at home in 2012, whereas the equivalent cost of a community palliative care package – including social care – would be £68.1 million[viii]. We’d like to see the new strategy address how to roll out new models of care, such as Macmillan’s Specialist Care at Home model, which provide integrated 24/7 support to enable people with cancer to die in their own homes if that is their preference.
If this strategy is to really make a difference to people’s lives, it must be strong on delivery mechanisms. There is a real opportunity here for the strategy to be a trailblazer for the radical vision set out in the NHS Five Year Forward View and we don’t want this opportunity missed. This means a radical shift from commissioning by activity, for example procuring chemotherapy or diagnostic services, to commissioning for better outcomes across a whole population. This, in turn, means developing the right outcome metrics, capturing the right data and looking at how financial levers can become enablers of, rather than obstacles to, change.
Finally, it means having the right system leadership – both at a national and regional level – to oversee and drive implementation and ensure that the workforce is fit to deliver the ambitions set out in the strategy.
Achieving these shifts won’t be easy and will cost money. But, if we want to saves more lives and support people to live well and longer after treatment, doing nothing is not an option.
[i] De Angelis, Sant M, Coleman MP et al. Cancer survival in Europe 1999–2007 by country and age: results of EUROCARE-5–a population-based study. Lancet Oncology 2013; http://dx.doi.org/10.1016/S1470-2045(13)70546-1
[ii] NHS England/Quality Health. National Cancer Patient Experience Survey 2014. September 2014. https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey/2014-national-cancer-patient-experience-survey-national-reports/688-2013-national-cancer-patient-experience-survey-national-report-pdf/file. Of those patients who said they needed it, 59% said they were definitely given enough care and help from health or social services after leaving hospital; 23% said they were to some extent; 18% said they did not get enough care and help.
[iii] Macmillan Cancer Support. Cured – but at what cost? Long-term consequences of cancer and its treatment. July 2013. http://www.macmillan.org.uk/Documents/AboutUs/Newsroom/Consequences_of_Treatment_June2013.pdf
[iv] NHS England/Picker Institute. NHS Staff Survey 2014. http://www.nhsstaffsurveys.com/Caches/Files/NHS%20staff%20survey_nationalbriefing_Final%2024022015%20UNCLASSIFIED.pdf
[v] Office for National Statistics. Deaths registered in England and Wales, 2013. July 2014. http://www.ons.gov.uk/ons/rel/vsob1/death-reg-sum-tables/2013/rft-deaths-summary-tables-2013.xls
[vi] Macmillan Cancer Support. February 2010 online survey of 1,019 UK adults living with cancer. Seventy-three percent of people with cancer said they would prefer to die at home if all their concerns about dying at home (such as access to pain relief, round the clock care, and support for their family and carers) were addressed.
[vii] Office for National Statistics. Place of death for cancer patients 2012, England and Wales – personal communication.
[viii] Macmillan Cancer Support. Can we live with how we’re dying? Advancing the case for free social care at the end of life. June 2014. http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Endoflife/EndofLifereport-June2014.pdf