Monthly Archives: April 2015

Cancer – a rare area of political convergence?

Ellie Rose
Macmillan Public Affairs Manager
Originally posted on Respublica on 24 April 2015

So manifestos are out and for those working on charities’ general election campaigns, the anxious wait is over.   Of course we know that, even in a typical election, manifestos are only really of interest to policy wonks and the likelihood of a further coalition in May makes them less significant still. Any policies may be tinkered with, watered down or dropped entirely in the tumult of coalition horse-trading.

However, they do provide the clearest mandate and sense of direction for the next government, whatever the complexity of its makeup. For example, the Conservatives’ 2010 manifesto set out their commitment to introduce a cancer drugs fund, which as you will know they followed through with in coalition*.

So, how did cancer do? Pretty well, all things considered. Cancer was mentioned in all three of the main parties’ manifestos, and by the Greens. This was far from certain a few months ago, with parties suggesting this was going to be the ‘mental health election’ and that, anyway, the economy rather than health would be the focus of manifestos.

living well

Macmillan Cancer Support has been campaigning for a year for parties to include three commitments that people affected by cancer told us mattered most to them. These are: cancer outcomes matching the best in Europe, dignity and respect for all patients, and free social care support to enable more people to die in a place of their choosing. So we were delighted to see each of these in the main parties’ manifestos, in some form or another.

Labour committed to best cancer outcomes in Europe, the Conservatives to world class cancer care, and Liberal Democrats to setting ambitious outcomes for cancer. All parties pledged they would do more to address the factors underpinning our poor outcomes in this country, such as late diagnosis (Labour and Conservatives), access to treatments (same), and after care (Lib Dems).

dignity

On dignity and respect, the Conservatives said they would ensure hospital and GP surgeries are places where you are treated with dignity and respect, Labour said they would support NHS staff to deliver the ambition that all patients are treated with the highest levels of dignity and respect, and the Lib Dems said they would set the highest standards in care.

Finally, on end of life care, the Lib Dems pledged to increase choice at the end of life and provide free social care support for those on end of life registers, if it proves affordable, the Conservatives said they would support commissioners to combine health and social care services for the terminally ill, so that more people are able to die in a place of their choice, and Labour said they would support those who are terminally ill to remain at home with home care provided by the NHS.

good death

There were many further commitments that would impact on the lives people affected by cancer, for example, Labour’s one week wait for cancer tests, the Conservatives’ commitment to deliver the cancer strategy, and Lib Dems’ improved support for carers and legal duty on the NHS to identify them (something Macmillan has been told by cancer carers would make a particular difference to them). All parties made commitments on health system and welfare reform.

All in all there was much to be welcomed, and perhaps an indication of the cross-consensus on health that organisations like the British Medical Association have been calling for, and that could make Simon Stevens, CEO, NHS England’s life a whole lot easier.

Perhaps.

In addition to the impact of a minority or coalition arrangement, there may be other factors that mean that people affected by cancer do not see the rapid implementation of the changes they need, come 8th May.

It is a question of priorities. The Conservatives under David Cameron have been committed to the NHS. But unless they win an outright majority, his leadership could be threatened and a new leader could have very different priorities. Added to this, there is the distraction of an in/out referendum on the EU. Labour is said to be drafting a bill to repeal parts of the Health and Social Care Act 2012, which would be introduced in their first 100 days. Could this detract political energy and capital away from frontline improvements? Finally, the Lib Dems will be keen to make their presence felt in any further coalition government, and reforms to mental health are likely to be a red line for them. Indeed they have repeatedly cited cancer care as benchmark for improvements in mental health, suggesting that they believe it is already ‘fixed’.

But cancer is not fixed. By the end of the Parliament in 2020, 3 million people will be living with cancer. Sadly, already too many people are dying too soon, not being treated with dignity, and being denied a good death. If the system is not coping now, how will it support this growing population?

So despite welcome commitments in manifestos, Macmillan and every single person who cares about cancer will continue to call for urgent action to improve cancer care and services. We will be demanding that whoever forms the next government makes an early announcement of a timetable for implementation of their commitments.

For the one in two of us who will soon face cancer in our lifetime, it is now time to deliver.cross

*The wording of this sentence was changed on 12/6/15 to make it clearer that we were stating a fact about the history of the coalition Government. It replaced “For example, the Conservatives’ 2010 manifesto set out their commitment to introduce a cancer drugs fund, something that they of course followed through in coalition.”

The Cancer Strategy – an historic opportunity

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

The Care Act swings into action (and we still care)

Sarah Benger, Senior Policy Analyst (@Mac_PolicyDept)

Today is a big day – and it isn’t about the General Election.

Today, the Care Act comes into force. It is an Act that overhauls social care legislation in England for the first time in 60 years. An Act that received strong cross party support. An Act that affords extra rights to carers.

For the first time, carers will have the same legal right to a needs assessment and support as those that they care for. Local authorities will also have general responsibilities towards their residents, including carers, such as keeping them safe, supporting their wellbeing and providing good information about local support services.

And for Macmillan, it is an important milestone in our Do you care? campaign.

As the Care Bill passed through Parliament, we lobbied to make sure that the Act recognised the need for local authorities and health bodies to work together. Because we know that there’s a major hurdle that stops many carers from accessing support: identification.

Mcareers-01 (2)ost people caring for someone with cancer don’t see themselves as a ‘carer’. As Lisa told us, after supporting her fiancé Luke who had cancer, ‘I didn’t really consider myself his carer. I just thought of myself as his fiancé. As far as I was concerned, he wasn’t well so I was looking after him.’

This means that people like Lisa will sometimes need help to know that services are available to them. And that their own health and wellbeing is important, despite the tendency to place their loved one’s needs first.

Health professionals are really well placed to do this, yet many aren’t identifying carers when they may have the chance. At least 70% of carers come into contact with health professionals while they are caring, often while accompanying the person they care for. Yet only 1 in 10 carers is identified by health professionals in hospitals, and just 1 in 7 is identified by a GP. [1]

So, welcome, Care Act. We have high hopes for you.

Statutory guidance under the Care Act sets out the need for health bodies to work with local authorities, particularly to identify carers with unmet support needs.

But we know that you alone aren’t enough to make sure every carer gets the support they need. Therefore the campaign must go on (see our policy report for more).

Caring for someone with cancer? We can help you.

Working with carers? We can help you.

[1] Carers Week. Prepared to care? Exploring the impact of caring onpeople’s lives. 2013.