Author Archives: James Shield

About James Shield

Senior Policy Analyst at Macmillan Cancer Support.

We need to talk about data

This week we have a guest blog from Fran Woodard, Executive Director of Policy and Impact at Macmillan Cancer Support, and Sara Hiom, Director of Early Diagnosis and Cancer Intelligence at Cancer Research UK


Every day more than 1,000 people in the UK are diagnosed with cancer. But how do we know this? And how do we know, at a national level, what treatment people have, what their chances of survival are, and whether this is getting better or worse?

The answer is simple. We know because we have high-quality data about the diagnosis and treatment of cancer.

Recent research shows that just one in three people feel they know either ‘a fair amount’ or ‘a great deal’ about how the NHS uses health data.

And, as we found out recently, the same is true for cancer data.

Cancer data in the UK is world-leading. Each of the four UK nations has a cancer registry, which the NHS and researchers use to plan cancer services and monitor how well they are diagnosing and treating patients. For example, the information is used to help plan how many radiotherapy machines to build and where they should go, and to investigate how many people are being diagnosed as an emergency, or what happens to people after their cancer treatment has ended.

The cancer registry allows the number of cases of each type of cancer to be tracked over time. This helps researchers investigate possible causes of cancer — such as whether there is a link between cancer and exposure to mobile phones or power lines.

Finally, the data can contribute to patients’ care, enabling clinical geneticists to check if a patient’s relatives also had cancer and adjust their treatment accordingly. And, if new information emerges about long-term effects of treatment, the cancer registry holds the data on who had this treatment. This means they can be contacted, so that they can get further support.

Research commissioned by Cancer Research UK and Macmillan Cancer Support shows that most people with cancer — around 9 in 10 of those surveyed — support the use of cancer data for ends like these. But they want to know what their data is being used for, who can access their information, how it is kept safe and secure and what details are kept. They also want to know about benefits and risks.

When someone is diagnosed with cancer they need to be told about this and the choices they have regarding their personal data. So what’s the best way to make sure this happens?

We heard from patients that health professionals caring for people with cancer are best placed to talk about the use of data and answer basic questions about it. As a simple first step, hospitals should ensure that existing patient information leaflets about cancer registration are available for staff to use and on prominent display to patients.

So that this doesn’t just rest on the shoulders of busy NHS staff, we’re looking into other ways to make sure patients are as informed and reassured as possible about what happens to the information about their cancer.

This data has been at the heart of progress in cancer in the UK. And we know that in order to reach our ambitious goals of improving care and survival, information like this is crucial.

The challenge now is making sure everyone knows about it.


Can Cancer Alliances live up to expectations?

In our first look at the state of Cancer Alliances, Niamh Kelleher and Louisa Petchey ask how they can cope with the weight of responsibility that is being placed on their shoulders

24 November, 2016

Map of Cancer Alliances

16 Cancer Alliances have been set up across England to deliver the Cancer Strategy (Source: NHS England)

The UK’s population is getting bigger and it is getting older. That means more people than ever before are being diagnosed with cancer. But thanks to improvements in treatment, more people are surviving.

While this is obviously great news, it doesn’t mean the pressure on our health system is any less, it is just different — and potentially even greater and more expensive.

Eye on the prize

As set out in the Cancer Strategy for England in July 2015, we want our health system to deliver world class cancer outcomes by 2020, not just in terms of survival but quality of life. If this ambitious vision is to be met, there is much to do and it is not going to be straightforward.

There are now an array of ‘place-based’ policy initiatives — new models of care, vanguards, and Sustainability and Transformation Plans — all trying to find a way to improve care for their communities while often significantly reducing costs. It is important that during this challenging time we don’t allow ourselves to lose sight of or compromise the recommendations in the Cancer Strategy.

A long to-do list

That is where we are hoping Cancer Alliances will come in. Cancer Alliances have long been a priority for Macmillan. We view them as a vital for providing effective oversight and co-ordination of the whole cancer pathway at a local level. Among other things, they should:

  • drive the delivery of national strategies and priorities
  • ensure meaningful user involvement takes place
  • promote whole-system coordination
  • provide strategic support and leadership
  • facilitate alignment and support local providers
  • support cost efficiency within local systems

So we were pleased to see in their response to the Taskforce report that NHS England share this view and that Cancer Alliance “footprints” have now been announced.

Will Cancer Alliances deliver?

But how confident can we be that Cancer Alliances will live up to the weight of responsibility that is being placed on their shoulders to deliver the Cancer Strategy?

Their task is no easy one. They are being expected to come up with a plan for the future of cancer care tailored to the needs of their local population, involving local people while also coordinating day-to-day improvements in cancer care and support. This includes working with multiple commissioning bodies, potentially dozens of providers and, most difficult, ensuring the transformation of cancer care and support in their area’s Sustainability and Transformation Plans (STPs); a process that in itself has been fraught with controversy and difficulty. All of this is expected with limited resource or dedicated staff time.

Reasons to be cheerful

But there are several important reasons to be optimistic. For one thing, Cancer Alliances exist. So now at least we have a structure that can focus on driving improvements in cancer care in an ever-changing environment. And amid so much negative publicity about planning rounds with STPs and service transformation, Cancer Alliances now have a unique opportunity to lead the way in working collaboratively with their communities.

We also expect that NHS England will soon make money available to Cancer Alliances so they can make improvements to diagnostics and ongoing support for people beyond the end of active treatment. This will be the first time we get to see Cancer Alliances in action, spearheading the transformation of cancer care in line with the Cancer Strategy recommendations.

Big test

Cancer Alliances will soon need to face their first big test since their footprints were announced. No two Cancer Alliances will be facing the same challenges, from the differing needs of their local cancer population to the impact of STPs on their local area. We will be looking on with expectation and qualified optimism — and as ever, Macmillan will be working with the rest of the cancer community to help make a success of the Cancer Strategy.

Niamh Kelleher and Louisa Petchey are Policy Analyst and Senior Policy Analyst (respectively) at Macmillan Cancer Support

The NHS in England may be struggling to meet even relaxed cancer targets

18 November, 2016
James Shield, Senior Policy Analyst  |  @jshield

The NHS in England has now failed to meet a vital cancer target in all but one of the past 29 months — and on the latest evidence, it is struggling to meet even the relaxed targets set by NHS Improvement this July.

Recognising the problem in hitting the national target to treat 85% of patients within 62 days of an urgent GP referral, NHS Improvement put the previous system of fines on hold. Instead, most trusts now have an ‘improvement trajectory’ to meet, tied to a bit of extra money from a ‘sustainability and transformation fund’. Out with the stick, in with the carrot.

Uphill battle

It’s too early to say whether that approach will work in the medium term. But what we do know is that NHS Improvement appears to have a bigger challenge on its hands than it might have thought.

Here at Macmillan, we’ve been comparing actual performance against this target with the ‘improvement trajectories’ for the first quarter of this new system — July 2016 to September 2016 (the most recent stats available).

Waiting times chart - for twitter.png

The actual picture differs in two important ways from what NHS Improvement wanted to happen by this point:

  • Many more trusts failed to meet the national target than NHS Improvement expected. By this point, just over 20% of trusts were expected to be missing the national target, leading into a period of recovery over the winter. Instead, it was more like half in July, August and September.
  • We may be seeing a divergence among trusts, between those persistently missing the target by a wide margin, and those meeting it by a comfortable margin. Such a wide divergence has implications for the way improvement funds are allocated.
Waiting times table - for twitter.png

Phantom carrot

Previously, trusts were fined for missing these targets. But since July, each individual trust can be rewarded for staying on their improvement trajectory with a pay-out from the £1.8bn Sustainability & Transformation Fund. 5% of that fund (or about £90m) is linked to this cancer target.

The idea is that rather than taking money away from struggling trusts, they should be helped to get back on track — a carrot rather than a stick — and between July 2016 and March 2017, much of the country is supposed to have recovered.

But according to our analysis, more than half of trusts (56%) could be at risk of missing out on this money, at least for the most recent quarter.

The rules go like this: in Q2 of 2016/17 (July to September), trusts need to be within one percentage point of their trajectory to get the pay-out. This then ratchets up to half a percentage point in Q3, until the ‘tolerance’ disappears entirely in Q4.

However, fewer than half (44%) of trusts were near enough to their improvement trajectories from July to September to qualify. Our estimate of the amount of money that might be withheld from these trusts during Q2 puts the figure at around £12.7m, though it’s hard to know for sure.

Reality check

It is too early to say whether this picture will improve as we move further into the winter. Early signs appear to be that the NHS is struggling even to meet relaxed targets. And perhaps more worrying is that these targets are being missed by so wide a margin that many trusts could continue to miss out on the money they need to improve, trapping them in a cycle of missed targets.

Macmillan will continue to speak out on behalf of the thousands of people who continue to wait too long to start treatment. We’d encourage NHS Improvement to keep a close eye not only on the targets, but also on whether its system for supporting trusts to get back on track is working.

With thanks to Samuel Jones in Macmillan’s Evidence department for help with data analysis

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1) Not all trusts have ‘performance trajectories’ in NHS Improvement’s new system. According to a document published by NHS Improvement in July 2016, trusts that had not accepted a financial ‘control total’ were excluded, and at the time of the document’s publication trajectories were subject to change due while they waited for regional sign-off. So for the purposes of this post, and its charts and tables, we only looked at the 133 trusts that had trajectories set for this period.

2) A couple of points on our estimate of the money that might be withheld from trusts: firstly, we only included trusts that had performance trajectories in place and saw at least 5 patients in any given month. Secondly, we estimated the withheld funds as follows: 5% of the Sustainability and Transformation Fund is linked to the performance trajectories for the 62-day cancer target. 5% of £1.8bn = £90m. Assuming this money is spread equally over the four quarters of the year, the amount linked to this target between July-September = £22.5m. We estimate that 56.4% of trusts missed their trajectories by >1% for the most recently reported quarter. 56.4% of £22.5m = £12.7m. If you think we’ve estimated this incorrectly, please do let us know.

Urgent care services are overstretched – we need to fund the cancer strategy now

10 December, 2015
Juliet Bouverie, Director of Services & Influencing  |  @julietbou

This piece first appeared in the Health Service Journal

As the dust settles following last month’s spending review, the NHS has to get down to the nitty gritty of how the precious early investment of £3.8bn is spent.

One area in desperate need of attention is cancer care, which poses a series of stark challenges for the NHS, both now and in years to come, according to Cancer Cash Crisis, a new report out this week from Macmillan Cancer Support.

Let’s start with how money is currently spent. New figures in the report show we are spending more than £500m a year on inpatient emergency care for people diagnosed with the top four cancers alone. Of this, at least £130m is spent on care more than six months after a person’s diagnosis, when initial treatment would usually have finished, but before their last year of life.

After successful treatment, people should be looking forward to getting their life back on track. Instead, many find they bounce back into hospital because they aren’t given the right care and support.

Care beyond treatment

Future prospects are perhaps even more alarming. With more people than ever surviving years or even decades after a cancer diagnosis, the NHS will need enough funding to provide care and support far beyond initial treatment.

As the number of people living with cancer in England rises from 2 million in 2015 to 3.4 million by 2030, this demand will become ever more acute.

New figures in the report show that care beyond treatment for people living with cancer will rise to at least £1.4bn per year by 2020, with £1bn being spent on consequences of treatment, such as side effects from drugs, as well as long term after effects.

Over the next five years, the growth in care beyond treatment amounts to a cumulative increase of more than £600m.

Budget burden

This is a significant chunk out of tight NHS budgets. Unless action is taken now, we will continue to see money being spent inefficiently and we will see the burden on an already overstretched emergency care services grow further.

Our health system cannot continue to assume that the needs of people living with cancer finish when initial treatment does – this is bad for the individual and a false economy for the NHS.

We must place as great an emphasis on supporting people to live well as we do on early detection and survival.

People’s needs are more complex now than ever before. As well as those living with the long term consequences of cancer and its treatment, increasing numbers of people will live with incurable but treatable cancer for several years.

Add in the fact that we currently have an estimated 1.4 million people with cancer in England who have at least one other long term condition, and suddenly providing care and support for this growing number of people starts to look like an almost insurmountable challenge.

Pressing strategy

What is the solution? Early diagnosis is certainly a key component, but it is by no means a magic bullet. For example, new figures released this week reveal that for the 40,000 women diagnosed with early stage breast cancer each year, the cost of inpatient care during diagnosis and initial treatment (£155m) is dwarfed by the £250m spent on inpatient hospital care after their initial cancer treatment ends.

This challenges the notion that patients’ outcomes, as well as the costs of care, can be improved through early diagnosis alone.

If the NHS is to get a grip on this dramatic collision of public spending and public need, the cancer strategy for England must be fully funded and implemented at the earliest possible opportunity.

Recommendations in the strategy, such as the rolling out of a recovery package, including a holistic needs assessment and other key interventions, such as a treatment summary and cancer care review, are vital steps that need to be taken if we are to help people live well beyond a cancer diagnosis.

Wise investment

When delivered together, these interventions can help to contain the rising tide of costs and significantly improve coordination of care and patient outcomes, including better and earlier identification of consequences of treatment, better management of co-morbidities, help with staying at or returning to work, and support with healthy lifestyles.

Funding the cancer strategy for England’s recommendations will not be cheap – it will cost an estimated £400m a year between now and 2020. But it will be a wise investment.

Investing early, followed by delivery of the savings identified by the strategy’s recommendations, would result in a £420m lower cumulative spend by the NHS over the next five years than failing to fund it at all. Worse still, delayed funding and late implementation of the strategy would actually cost about £100m more by the end of this parliament than doing nothing at all.

The cancer story will continue to shift with time and new solutions will constantly have to be found. Through the cancer strategy, the NHS has a chance to shape this story for the near future.

The health service has to be brave and invest now, so that we can improve lives and make every penny count.

George Osborne

Five thoughts on what the Chancellor’s spending review means for people affected by cancer

1 December, 2015
James Shield, Senior Policy Analyst  |  @jshield
Victoria Woods, Senior Public Affairs Officer  |  @vgwoods

It was widely reported last week that George Osborne has committed billions of pounds of ‘extra’ money for the NHS over the next five years as part of his Comprehensive Spending Review. But what is the bigger picture for healthcare, social care and welfare, and what will the announcements mean for people affected by cancer?

1. Extra funding for the NHS is welcome – but it needs to be spent wisely

It is good to hear the government is investing in the NHS’s plan for the next five years, and that £3.8bn extra will go into the NHS next year; our creaking health service badly needs this money now.

But three quarters of England’s hospitals are now running a deficit, which by the end of the year is expected to hit £2bn. We have seen the impact of this pressure on frontline cancer services: cancer waiting time targets have now been missed for seven quarters in a row. In the short term, the extra money will help to plug the black hole in NHS balance sheets, which we hope will mean getting back on track with meeting existing targets.

It is now crucial that the government spends wisely and fully funds and implements the cancer strategy for England which will be transformational for cancer care. Although the cancer strategy was mentioned in the Spending Review, this was only to reiterate a commitment to implement the previously announced recommendations on a new 4-week target for diagnosis and improved diagnostic capacity through £300m in funding.

As we said in October, time is running out: by 2020, there will be half a million more people living with a cancer diagnosis in England than in 2015. The strategies and solutions to support this growing population and avoid further crises have been agreed – what we need now is action. Macmillan will continue to push for the cancer strategy to be implemented in full.

2. We often hear that to have a strong NHS we need a strong economy – but despite extra funding, the NHS is not receiving its fair share of the proceeds of growth

The Government has often said that we need a strong economy to have a strong NHS. The reverse is just as true – we need a strong NHS and a healthy population to have a strong economy. As the economy returns to growth, we should invest in the long-term health of the nation. But on the evidence we saw in the Spending Review, it looks as though health and social care funding are going in the opposite direction.

Billions of pounds of extra money is a big investment, but as the population ages, more treatments become available and more people survive diseases such as cancer, the demand for healthcare could still outpace funding. Even with the additional money, we are now mid-way through the longest decline in NHS funding as a percentage of GDP since the war:

What does this mean for cancer services? The picture is unclear: we don’t yet know how the NHS will use its funding allocation, and will find out more when NHS England’s plans are published in early 2016.

What we do know is that between 2010-2013 spending per cancer patient had already fallen by between 4-10% (the latest figures available).

It can be difficult to know whether healthcare funding necessarily leads to a healthier society, and not all high-spend health services get value for money, but there comes a point where it is clear that more could be done with additional funding, and this is true of cancer.

In comparison with the rest of the world, both our level of healthcare spending and our cancer survival rates fall short. Last week’s announcement means that over the next five years, the share of GDP the UK spends on the NHS will fall even further below European and OECD averages:

3. Cuts to public health and bursaries for nurses are counterproductive

We understand much of the extra £3.8bn for the NHS next year is in fact sourced from a 25% cut to the Department of Health’s non-NHS budget.

It is counterproductive that ‘extra’ NHS money is being sourced from cuts to public health (which includes cancer screening and smoking cessation clinics) and bursaries for student nurses. This precious investment should be used to drive genuine progress – instead, it is being used to paper over the existing cracks.

Local authorities’ public health budgets will also fall by an average of 3.8% in real terms each year. The public health ring-fence will be ‘maintained until 2017/18’, which implies it might not continue afterwards.

This means the Spending Review has failed to meet one of the ‘five tests’ set by the head of the NHS, Simon Stevens, for the Spending Review – to “make good on the public health opportunity”.

4. We’re still concerned about social care funding

Funding the health service is just one side of the coin. The needs of people living with cancer are often life-long, and many require non-medical support to get by.

We are concerned that continuing pressure on social care budgets means that extra funding given to the NHS could end up being spent propping up a cash strapped social care system.

George Osborne announced a new optional levy on council tax of up to 2% per year, which is to be ring-fenced to fund adult social care. But commentators are suggesting that even if this is implemented by every council each year there will still be a substantial funding gap.

Perhaps even more problematic is the risk that access to social care could become more of a postcode lottery and exacerbates health inequalities by disadvantaging councils with weaker tax bases. According to the Institute for Fiscal Studies, councils such as Manchester, Hackney, Liverpool, Newcastle and Birmingham could only raise an extra 4%, while Richmond and Windsor could raise 17-18%. Meanwhile the King’s Fund warned the measures “are not a substitute for sustainable funding”.

No other advanced economy is reducing the share of national income spent on social care, as the UK is doing. We know that during the first few years of the last parliament’s social care cuts, over 360,000 fewer older people received social care than before. It is difficult to be optimistic about the future of social care against this background.

5. The welfare situation has changed less than the headlines suggest – and we will do all we can to be there for people affected by cancer

One of the big headlines after the Spending Review was the government’s supposed u-turn on its controversial proposals to cut Tax Credits. While we welcome this change because we know many people with cancer use this financial support, this is only a short-term gain, as the same cuts will continue to apply to Universal Credit, which is already being phased in.

Despite talk of u-turns, the impact of tax and social security changes over the next four financial years will be the same as first estimated after the July Budget statement (the poorest 20% will still be around 7% worse off). The Chancellor also reiterated his commitment to implement £12bn of savings, part of which is the already announced cut to ESA WRAG, which we are campaigning to stop.

Macmillan believes it is vital people affected by cancer get the support they need through the social security system, so monitoring and responding to the introduction of Universal Credit will continue to be an important part of our work.

What do you think about the impact of the Spending Review? Let us know in the comments below.

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One year on from the NHS Five Year Forward View: aspiration in the Cancer Strategy, desperation on the front line

Strategies and solutions to avoid further crises have been agreed – what we need now is action

30 October, 2015  |   James Shield, Senior Policy Analyst  |  View all posts  |  @jshield

Left to right: The NHS Five Year Forward View; the Cancer Strategy for England; headlines about missed cancer waiting time targets

The NHS Five Year Forward View (5YFV) – the ‘Stevens plan’ for the future of the NHS – is already a year old. What has the NHS achieved for people affected by cancer since its publication?

On the one hand, we were pleased to see that the 5YFV included a section on cancer, and were proud to be part of the independent taskforce behind a full Cancer Strategy for England, published in July. The whole cancer community came together to agree on an ambitious plan for world class cancer care which, crucially, acknowledges that the job of the NHS isn’t just to treat the disease but also to enable people to live healthy, fulfilling and productive lives after treatment. The report provides a compelling blueprint for change.

However, cancer services have faced an unprecedented struggle over the past year.

Cancer waiting time targets have now been missed for six quarters in a row with no sign of improvement in the near future. The official line from the Department of Health is that this is due to an unexpected increase in the number of people being referred by GPs for tests – but as we explained in March, the trend in referrals ought to have been fairly predictable. Perhaps, as the King’s Fund has suggested, the NHS simply faces an ‘impossible task’ given current constraints on spending and rising demand.

Whatever the cause, the result of this crisis is that people with cancer are having to wait too long for access to treatment and their lives are being put at risk. And  across the country, we know that NHS staff are under more pressure than ever, struggling to find the time they need to meet rising demands and deliver the best patient experience.

Time is clearly running out: by 2020, there will be half a million more people living with a cancer diagnosis in England than in 2015, and the Five Year Forward View is already the Four Year Forward View. The strategies and solutions to support this growing population and avoid further crises have been agreed – what we need now is action.

Macmillan’s priorities are clear. To solve the problem of fragmented responsibility and accountability for cancer care since the Health & Social Care Act was introduced, we need to set up Cancer Alliances. To make sure the NHS delivers what matters most to patients, we need to design new quality of life and patient experience metrics, start collecting the data and hold the system to account for its performance. To make sure the NHS has a cancer workforce fit for the challenges of today as well as the future, we need an urgent strategic review. And to ensure tailored, long-term support for the two million people living with a cancer diagnosis in England – half of whom may live more than 10 years after their diagnosis – we need a national Living With and Beyond Cancer programme.

If the NHS can deliver for cancer, it will position itself well to deliver for everything else. The same themes set out in the Five Year Forward View are also at the heart of the Cancer Strategy – whole-person care, a sustainable workforce model, taking early action to avoid costly care in the future, self-management – and as a rare area of political convergence, it should be possible to gather momentum behind improving cancer care as an early priority. Once these approaches have been implemented and evaluated, they can then be rolled out to release further efficiencies and join up long-term condition management.

If the NHS is to achieve this, and close the gap between the aspiration in our strategies and the desperation on the front line, the recommendations in the Strategy must now be fully funded. Ahead of George Osborne’s Comprehensive Spending Review next month, we are watching very carefully which parts of the Cancer Strategy have gained political and financial backing so far and which have not.

We welcomed Jeremy Hunt’s recent commitments to speed up diagnosis, ensure everyone gets access to a Recovery Package by 2020 and introduce a Quality of Life measure for people with cancer. But we need the government and the NHS to commit publicly – and financially – to initiatives such as the workforce review, Living With and Beyond Cancer programme, Cancer Alliances and accountability for improving patient experience that we know are so vital to improving England’s cancer care services.

We will only be able to say the government’s manifesto commitment to delivering the cancer strategy has been met when these cornerstone initiatives have been fully funded. And in order to deliver world class cancer care in the future, front line services must also be protected and properly funded today. The Department of Health’s settlement in the forthcoming Spending Review must be sufficient to tackle the increasing challenge that cancer care poses. A ‘technical appendix’ of the Five Year Forward View estimated that expenditure on cancer services will need to grow by about 9% a year, reaching £13 billion by 2020/21. The Cancer Strategy recommendations will help place NHS finances on a firmer footing – but its vision can only be realised if recent declines in performance are reversed and existing targets met through investment in the services people need today.

There is much left to do, then, in the remaining years of the 5YFV – and this parliament – to ensure that the 2.5 million people who will be living with a cancer diagnosis in England by 2020 get the best possible care and support. As NHS England’s strategy director has said, doing is harder than writing. We will continue to influence government and policy makers to make sure the 5YFV and the Cancer Strategy result in real improvements.

Cancer Strategy ambitions

The six main ambitions in the Cancer Strategy for England