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

1-bppurqxxybtbpwstesd8uw

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.

 

What we’d like to see from the Cancer Strategy: one year on

It’s a big week for the All Party-Parliamentary Group on Cancer (APPGC). Ahead of today’s Britain Against Cancer conference and Thursday’s much-anticipated Backbench Business debate on cancer in Parliament, Ayesha Ahmed, Secretariat to the APPGC, reflects on the inquiry held by the group earlier this year into the progress of the 2015 Cancer Strategy in England.

Cancer services in England are at a crucial turning point. It is estimated that by 2030, 3.4 million people will be living with cancer in England and this figure continues to increase.  Transforming cancer services is no longer an option but a necessity, and is why implementation of the England Cancer Strategy is so important. This is an issue that Macmillan have been working on in our capacity as Secretariat to the All-Party Parliamentary Group on Cancer (APPGC), a position we have held for over seven years.

 

What is the APPGC?

The APPGC was founded in 1998 with the aim to keep cancer at the top of the parliamentary agenda, and to ensure that cancer policy remains evidence based and patient centred. The group consists of cross-party MPs and Peers, who monitor government initiatives, produce briefings for parliamentarians and campaign and debate on key issues in order to bring about improved cancer services for all those people affected by cancer.

appgc-inquiry-report

September’s inquiry report

In May this year, the APPGC held an inquiry looking into progress made since the publication of the report, Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 (‘Cancer Strategy’) by the Independent Cancer Taskforce in July 2015, including a focus on the implementation plan published by NHS England in May 2016, Achieving World Class Outcomes: Taking the Strategy Forward (the Implementation Plan) which set out how the recommendations would be rolled out over the next five years.

The APPGC received written submissions from over 30 stakeholder organisations, from charities, pharmaceutical companies to Royal Colleges and patient representatives, and hosted oral evidence session to hear from key decision makers.

Having collated all the oral and written evidence, the APPGC published a report, Progress into the implementation of the England Cancer Strategy: one year on.

 

What needs to happen?

Whilst welcome progress has been made on delivering certain recommendations within the England Cancer Strategy since its publication, the APPGC’s inquiry highlighted concerns regarding the Implementation Plan and lack of visible progress made in other areas.

The APPGC therefore put forward three key recommendations to the Government and NHS England:

  • Firstly, the government needs to give further clarity over how it intends to fund the England Cancer Strategy each year, over the next four years.  Many contributors expressed their disappointment over the absence of detail on funding in the Implementation Plan, and sought specifics about how available funding would be used to deliver improvements across the entire cancer pathway.  Whilst some of this detail was set out in the Cancer Transformation Board’s one year on report, further clarity is still needed on how funding will be allocated to the six strategic areas outlined in the Strategy.
  • There needs to be further transparency regarding progress from NHS England and other Arms-length Bodies on how each of the recommendations as outlined in the England Cancer Strategy are being delivered. In addition, more detail is needed to explain how the Department of Health intend to hold these bodies to account and measure success of the delivery of the England Cancer Strategy by 2020.
  • Thirdly, the APPGC called on the National Cancer Transformation Board and the National Cancer Advisory Group to ensure greater involvement and collaboration with charities, other arms-length bodies and patients in the delivery of the England Cancer Strategy, locally and nationally.

 

What next?

The APPGC’s annual flagship event, Britain Against Cancer, is in its 18th year. As part of the conference today, we will be highlighting the Inquiry Report recommendations, calling on Government and NHS England to respond to the report and discussing how the cancer community can come together and work to ensure improved cancer outcomes. Follow the conference at #BritainAgainstCancer and Macmillan’s updates @MacmillanPA

The APPGC have also secured a Backbench Business debate on Thursday, titled Cancer Strategy: one year on, which also serves as a timely and welcome opportunity to discuss cancer services in the NHS today.  The debate will be a crucial opportunity for MPs to question the Minister on how the Strategy is progressing, and we look forward to monitoring the contributions on Thursday.

 

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

Tweet this  |  Share on LinkedIn


Notes:

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.

Why it’s vital that carers of people with cancer are supported through the Carers Strategy

Macmillan’s new report, Cancer Then and Now, shows that more people than ever are living longer following a cancer diagnosis and often with the complex consequences of treatment. There are now an estimated 2.5 million people living with cancer in the UK, a figure that is expected to rise to 4 million by 2030.

The implications of this are significant. More and more people are taking on caring responsibilities for a friend or family member with cancer. Since 2011 we’ve seen the number of carers of people with cancer in the UK rise from 1.1 million to nearly 1.5 million, an eye-opening increase of nearly 27%. Without this vital support, many people with cancer would have to face it alone.

As the story of cancer changes so too has the role of carers of people with cancer, who are now providing more hours of care than ever before and undertaking tasks which are more complex in nature. With carers taking on increased levels of responsibility, their support needs have also grown. The contribution of unpaid carers across the country is invaluable and without them the health and social care systems would be under impossible pressures. But no-one who looks after someone should have to face it alone, and we need to ensure that there is adequate support to meet their growing needs.

It’s therefore extremely welcome that the Government has committed to developing a new Carers Strategy for England to ensure that carers are supported to live well whilst caring.

What do cancer carers want to see in the Carers Strategy?

Macmillan’s response to the Carers Strategy call for evidence was informed by new research and the experiences of over 400 cancer carers living in England.

Through our response we wanted to raise awareness of carers of people with cancer and the huge contribution they make, but we also needed to challenge the common misconception that cancer is an acute and terminal illness. Around half of those diagnosed with cancer today live for at least ten years after diagnosis. Despite this, many people aren’t aware of the impact and long-term consequences of the condition and how this can affect friends and family members who become carers.

It’s therefore essential that the Carers Strategy recognises the unique role and the significant contributions that carers of people with cancer in England make to our society.

Since 2011, the nature of the support that carers of people with cancer provide has become increasingly varied. Carers are now more likely to provide hands-on personal care, undertake healthcare tasks and help the person with cancer navigate the complexities of the health and social care system. Yet many carers are still receiving little or no support.

Macmillan’s research found that whilst almost a third of carers of people with cancer are providing vital healthcare support for the person they’re caring for – including changing dressings, giving medication and managing infection control – 40% of them have not received any training or support to do this.

Whilst the experience of caring is different for everyone, there are many similarities in the issues which cancer carers face. This includes the important role of health professionals in identifying carers and signposting them to support, and the need for health and social care professionals to involve carers as equal members of the cancer care team when the carer chooses this.

And, at present there’s a disconnect in the system; many carers don’t come into contact with their local authority or the voluntary networks where much of the available support can be accessed. Instead they will typically interact with health professionals, such as when attending appointments alongside the person they care for. But our research has found that only 1 in 5 healthcare professionals say that they always identify carers and signpost them to support.

What is Macmillan calling for?

Macmillan is calling for the strategy to recommend mechanisms which will improve the identification and signposting of carers to the right support. This could include placing a statutory duty on health bodies requiring all health professionals in these settings to identify and signpost carers to support. Unless this is routinely done, carers will continue to miss out on having their needs assessed and having adequate support put in place to address these.

We should also be moving towards making carers a more integral part of the cancer care team; valuing their expertise, sharing information more readily between professionals and carers, and training carers in how to provide care safely. Furthermore it’s vital that the strategy recognises the need to support health professionals to support carers through appropriate training.

There’s an important role for the strategy to recognise and support the rights of carers of people with cancer who are currently in employment. And finally, it’s essential that the strategy also recognises the role of the welfare system which many carers rely on whilst caring.

What happens now?

In early July the Minister leading the strategy, Alistair Burt MP, announced that he was stepping down as Minister for Community and Social Care. His replacement David Mowat MP brings the carers and the cancer brief together at the Department of Health, presenting a new opportunity to take a holistic approach to supporting carers and the people they care for.

It’s essential that the Westminster Government now prioritises the development and alignment of policies that promote better cross-working between health and social care professionals, the voluntary sector and carers to ensure that appropriate and easily accessible support is put in place.

And whilst the strategy will only determine future policy affecting carers in England, Macmillan continues to influence on carers issues throughout the UK.

In Wales, Macmillan is working as part of the Wales Carers Alliance to help refresh the Welsh Government’s Carers Delivery Plan and Carers Strategy, raising concerns around how local authorities will meet new enhanced duties to identify and meet the needs of carers through services delivered locally.

In Scotland, Macmillan welcomed the emphasis on support for carers within the Scottish Cancer Strategy, as well as the new support measures promised to all carers in the Carers Act. Our focus now is on ensuring the promised improvements to carer support are delivered. We will monitor this closely and continue to ensure the needs of those caring for someone with cancer in Scotland are recognised.

Whilst Northern Ireland is the only region of the UK without recent legislation to improve support for carers, Macmillan has joined forces with other charities in a new Carers Coalition to raise awareness of the huge contribution made by people caring for family members and friends. And we will continue to push the Northern Ireland Executive for progress.

In England, Macmillan will be working closely with the Department of Health in the coming months to ensure that the voices of cancer carers are heard and represented in the development of the strategy.

For more information about Macmillan’s work to support cancer carers across the UK, please contact Ben Parker (beparker@macmillan.org.uk)

Why we can’t be daunted by the workforce challenge

The NHS employs around 1.5 million people (around 1.2 million of these in England), putting it in the unlikely company of McDonalds, the US Department of Defence and the Chinese People’s Liberation Army as one of the largest employers in the world.  It’s perhaps no wonder then that workforce has always been one of the hardest questions for the NHS to tackle – how best to use 1.5 million people to deliver healthcare to a population of 64 million?  With the NHS seeming to constantly lurch from one crisis to another on workforce, is the question just too difficult to answer?  At Macmillan, we think it can’t be, and that starting with the cancer workforce could be a way to start unlocking some of the trickier questions around how to manage one of the world’s five largest workforces.

Since the announcement of the Independent Cancer Taskforce last January and the subsequent publication of the Cancer Strategy for England in July last year, the cancer community has been working hard to decide what cancer care should look like in the future.  We know that the number of people living with cancer is growing and that their complex and changing needs have to be addressed.  We know that care needs to be more personalised, and that improvements need to be made to patient experience right across the pathway.  But we also know that none of this can be achieved without the right workforce with the right skills in the right place.

At Macmillan, we understand just how important the workforce is to someone with a cancer diagnosis.  Workforce planning and its associated focus on capacity, skills-mix and retention, may sound fairly dry but the stories we hear from patients about the crucial role played by both the salaried and unsalaried workforce – from the consultant who diagnosed them, to the Clinical Nurse Specialist who supported them through treatment, to the volunteer who provided them with information and support – remind us why this is such a crucial part of delivering the ambitions set out in the Cancer Strategy for England.

But it also reminds us of why it is such a huge challenge.  The needs of the 2 million people currently living with or beyond cancer in England are complex and varied, and whilst many people with cancer have a positive experience of their care, too many people do not have the support they need.  Data shows us that there are gaps in key professions including Clinical Nurse Specialists and General Practitioners, and professionals across the health service are still hampered by organisational boundaries and silos.  Add into this mix the unprecedented financial challenges facing the NHS, the need to deliver the changes set out in the Five Year Forward View, and uncertainty around what impact the EU referendum result may have on the NHS workforce, and the challenge of developing a sustainable cancer workforce that is fit for purpose can seem a daunting prospect.

It is vital however that we don’t shy away from this challenge.  The Cancer Strategy for England recognised how integral workforce is, and included a number of recommendations, with the key one being that Health Education England should work with NHS England and other bodies to conduct a strategic review of the cancer workforce.  We believe that this is one of the most important recommendations in the strategy and offers a huge opportunity to think differently about what the cancer workforce needs to look like in the future.

The scope of this recommendation means that it will require the support of the whole cancer community to deliver.  That’s why earlier this year we worked in partnership with Cancer Research UK to bring together around 30 organisations including charities, professional bodies, Royal Colleges and Health Education England themselves, to discuss what the strategic review should look at.

The output of this event is a set of eight principles which those organisations, along with Macmillan and CRUK, believe should underpin the workforce review.  For example, principle one states that the review should look both at the current and future cancer workforce, whilst principle four states that the review needs to demonstrate how the workforce can be educated and supported to develop the right skills, training and behaviours to deliver high quality and compassionate care.  We believe that all of them are equally important, and all need to be considered if the review is to set out a meaningful vision for what the cancer workforce of the future should look like.  However, they should be just the start of the conversation and we’d like you to get in touch and tell us what you think – is there anything else that should be prioritised?

What ultimately underpins these principles is a shared consensus that there is an urgent need for change. We must be ambitious when thinking about when, where and by whom care is delivered.  It is no longer possible to plan for the future workforce by thinking soley about numbers of current professionals. We need to start with the needs of the patient and decide how the workforce can best meet the challenge, not just of a rising population but of a changing demographic with more and more people living with cancer as a long term condition (something which we highlighted in our report released earlier this month on how cancer care has changed over the last few decades).

Importantly, we also need to think about how strategic workforce planning should work in future.  A number of think tanks have highlighted the challenges around workforce planning in the NHS more widely, with data gaps and a lack of clear roles and responsibility in relation to workforce strategy being two key issues.  These challenges are all borne out in the current challenges facing the cancer workforce, and as cancer involves a wide variety of professions, specialisms and settings we believe it can be an effective test bed, with lessons that can be applied across the NHS.

At Macmillan, we’re excited about the opportunity to start tackling some of these big questions, and we’re inspired by the drive, commitment and consensus of the cancer community on this important issue.  If the Cancer Strategy is to make a real difference to the experience of individual patients by 2020, it is important that this momentum is retained and that workforce is at the heart of the Cancer Strategy implementation.  Over the next few months, we’ll be continuing to think about what the future workforce should look like, so why not get in touch and tell us what you think.

Rebecca Leech, Senior Public Affairs Officer

Contact: RLeech@macmillan.org.uk or NKennedy@macmillan.org.uk

@MacmillanPA