Tag Archives: Cancer

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

 

MPs grilled by Cancer Voices at Macmillan Question Time

Luciana Berger MP, Lynda Thomas, Martyn Lewis, Jo Churchill MP, and Norman Lamb MP

Luciana Berger MP, Lynda Thomas, Martyn Lewis, Jo Churchill MP, and Norman Lamb MP

By Nafisa Shk, a Macmillan Cancer Voice

On the 9th of September I was given the opportunity to attend the Macmillan Question Time 2015 at the house of parliament. Having never attended before, I was beyond excited about this opportunity, mainly because cancer has affected me and my family majorly. Having lost my mother 3 years ago to cancer, I decided to dedicate my time and effort being involved in campaigning with Macmillan. The event itself was designed to put forward some key points for the MPs to follow upon.  We the people however played a vital role in not just asserting these points, but also using our own experience with cancer to convince the panel on why these issues are paramount. The aim of this event was to give a platform to people affected by cancer, Cancer Voices and Health Care Professionals from different  backgrounds  to discuss the most vital parts of their journey and what needs changing.

Macmillan’s desires four essential points to be put into action:

  • Integrate local services and share best practice across the NHS by creating new boards of local experts, commissioners, and patients called Cancer Alliances
  • Improve life after treatment by fully-funding a five-year Living with and Beyond Cancer Programme which will roll out new initiatives to improve support. An example would be Macmillan’s Recovery Package which measures quality of life for people living with and beyond cancer to understand how they should be supported
  • To recruit more staff for in-demand roles such as Clinical Nurse Specialists; as well as make sure staff have the right skills, training, and behaviour; that they deliver high-quality care; and support carers
  • Introduction of new measure of patient experience to drive improvements in care more generally.
Cancer Voices

Cancer Voices, Macmillan staff and MPs mingling at the Cancer Voices reception

The panel was headed by Television Presenter Martyn Lewis and consisted of three MPs representing the three main parties: Jo Churchill (the Conservative MP for Bury St Edmunds), Norman Lamb (Liberal Democrat MP), Luciana Berger (British Labour Co-operative MP) and Macmillan’s Chief Executive Lynda Thomas.  Lynda made a very crucial point about how Cancer does not have to be a life sentence and how important it is to give support to people post cancer, particularly going back to work and living a normal life. Most importantly, Lynda resonated what most of us affected by cancer hope for, achieving better cancer outcomes by working on preventive measures first.

The point I most related to was to deliver high quality care by recruiting more staff and providing up to date training for the right skills, and the support for carers. Personally, as my Mother’s carer I could relate to why it’s necessary that carers are given the care and support they deserve. The stress and effects of cancer can affect not just the patient, but the whole family particularly the carers. Amidst being an advocate for my Mother’s cancer, and her treatment, me and my Sister who also was also a carer for my mom, had to deal with a lot of mixed emotions. I felt the care and the support we expected from the system was not enough.  Carers need to feel safe and protected, given the right amount of resources and training to get through this time in their lives.

People chatting at the Cancer Voices Reception

Small groups discuss the Cancer Strategy during the Cancer Voices reception

The main aspect of this event I noticed was how much freedom we the people were given. This not just included the close interaction between the members and the cancer voice who attended, but most importantly, the chance to meet and communicate our thoughts and experiences with various local MPs. There were no barriers of any kind, be it emotional or professional. We were given an opportunity to lay the forefront issues concerning our individual experiences facing cancer and its consequences. For instance, I got the opportunity to speak candidly about my experience of my family’s cancer journey during the time my Mother got diagnosed with Robin Walker, the Conservative Party MP representing the Worcester constituency.  Robin listened to all of us patiently, giving back suggestions and ideas of his own explaining his own personal experience with cancer.

All in all, being a Cancer Voice with Macmillan is something I would highly recommend anyone with a passion to fight this disease. Macmillan’s has a brilliant team, and the ability to bring together people from different backgrounds and cultures, campaigning and advocating for a cause that unites everyone. I have in the past attended many of their events, and have always been treated with utmost kindness and respect. The thing that struck me the most at the Question time event was how everyone was given a chance to tell their story. The Public Affairs team were highly trained, and knowledgeable, but most importantly compassionate and good listeners.

What question would you have asked our panel?

A Cancer Strategy for England: focus on living with and beyond cancer

Following on from Duleep Allirajah’s blog on the Cancer Strategy, we’re going to be publishing a series of posts looking in more detail at our priorities. This week, we’ll be looking at how to improve care for people living with and beyond cancer.

Half of people who are diagnosed with cancer will now survive for at least 10 years after their diagnosis[1].  This is, undoubtedly, a huge cause for celebration. But it is not the full story.

There is a common belief that people with cancer either pass away from the condition or are cured and enjoy a good quality of life. But while it is sadly true that many people still die from cancer, we also need to acknowledge for many others the end of treatment does not mean the end of ill health. Numerous needs can arise  from the physical, emotional, practical and financial impact of cancer: 53% of people living with cancer have one or more moderate or severe unmet needs, such as depression, anxiety or tiredness, six months after the end of treatment[2] and 1 in 4 people face poor long-term health or disability.[3]

Many of these needs could be tackled with the right follow-up care and treatment – but this is not available. Four in 10 (41%) cancer patients say they are not given all the  support from health and social services they needed after leaving hospital and 78% are not offered a care plan.[4] What’s more, failing to provide support for people with cancer doesn’t just impact the individual, it has consequences for the health service. People living with the consequences of cancer and its treatment are more likely to re-enter the health service, often requiring further treatment. But despite the evidence that improving the care for people living with cancer would have cost-saving benefits, there is still much more to be done to address the problems.

This could be about to change. Achieving World Class Cancer Outcomes: A Strategy for England 2015-2020, the hugely ambitious report published by the independent Cancer Taskforce last month, is seeking to improve quality of life for people living with and beyond cancer. This could be a watershed in the treatment of cancer. We hope that it will enable all people with cancer to access the support and care they need, and in turn reduce strain on the stretched health service.

So what does the report propose? One of its most radical recommendations is the introduction of a quality of life metric. This means not just measuring and holding CCGs to account for how long their patients survive cancer, but also how well they are living. It also recommends that all patients should have access to the cancer Recovery Package, designed to help people get back on their feet after treatment, and sorting patients into different follow up pathways based on needs.

This is a blueprint for improving the experiences and outcomes of people with cancer, but much more work is needed to turn these plans into a reality. The Strategy recognises this. It recommends a new living with and beyond cancer programme, led by the NHS and partners. This is really exciting, and we think a well resourced, fully funded 5 year programme will be crucial in transforming care.

Helping people to live well during and after treatment for cancer is something the NHS has struggled with for decades, but the new Cancer Strategy gives us an opportunity to change this. This is a huge ambition, and will require strong leadership and support from the health service.

We will be continuing to blog about implementing the strategy – check back soon for more thoughts on how our priorities can become reality.

[1] Cancer Research UK. One-, five- and ten-year survival for all cancers combined http://www.cancerresearchuk.org/health-professional/cancer-statistics/survival/all-cancers-combined#heading-Zero

[2] Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, and Richardson A. 2009. Patients’ supportive care needs beyond the end of treatment: A prospective, longitudinal survey. Journal of Clinical Oncology 27:36 6172-http://www.macmillan.org.uk/Documents/AboutUs/Newsroom/Consequences_of_Treatment_June2013.pdf

[3] 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

[4] 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.

 

 

A Cancer Strategy for England: turning ambitions into reality

Cancer is changing. The old ‘die or cure’ paradigm no longer holds. There is an increasingly sizeable section of the population who have survived cancer but who are still unwell. Until now the NHS hasn’t been good at supporting cancer survivors to live well after treatment. But all this could change with the publication last month of the Independent Cancer Strategy Taskforce’s blueprint for achieving ‘world class cancer outcomes’. In future the outcomes which the NHS will be aiming to achieve will include quality of life as well as length of survival.

Achieving World Class Cancer Outcomes: A Strategy for England 2015-2020 is a hugely ambitious document which has prompted some critics to question whether, in the current economic climate, the NHS can afford the cost of implementation. A better question would be: ‘Can we afford to do nothing?’ The answer is an unequivocal ‘no’. It’s a scandal that survival rates in the UK continue to lag behind the best performing European nations. It’s also a false economy. If cancers are diagnosed later not only are outcomes likely to be poorer but treatment costs are generally higher. There’s also a powerful economic rationale for improving aftercare. There are 2 million people living with cancer in England, one in four of whom will have treatment-related long-term effects and 70% have one or more long-term health conditions. The increasing numbers of people living with cancer and trying to cope with the physical and psychological effects of cancer treatment will place an intolerable strain on health and social care services unless we can support cancer survivors to live well, manage their own condition and stay out of hospital.

The report proposes a series of measures aimed at preventing cancer and diagnosing patients earlier. These include reducing smoking prevalence to less than 13% by 2020, ensuring that 95% of patients are diagnosed within 4 weeks of GP referral. The new 4-week target is massively ambitious and, in order to realise this ambition, the report calls for an increase in diagnostic capacity, direct GP access to key diagnostic tests and the trialling of new models – such as multidisciplinary testing centres – which can facilitate earlier diagnosis. These measures will require significant investment, as will the proposed replacement of over 100 linear accelerators with new, state-of-the-art equipment.

Inevitably, the headlines have focused on the ambition to save more lives – the report estimates that by 2020 up to 30,000 additional people could survive for 10 years or longer each year if its recommendations are implemented and ambitions met. However, while saving lives is an absolute imperative, what’s really radical about the proposed strategy is the recognition that people with cancer must be enabled, not just to live longer, but to live well after treatment. One of the potentially game-changing proposals in the report is the development of a new ‘quality of life’ metric for cancer. At present the NHS primarily measures the length of survival, not the quality of a person’s life. Why is a quality of life metric important? Firstly, it is a very significant statement of intent; it signals 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. This isn’t just good news for patients, it makes good economic sense. If people with cancer are equipped to live well and manage their condition, it should reduce downstream costs to the system and provide economic benefits to wider society.

Secondly, a quality of life metric should serve to incentivise the radical overhaul of ‘follow-up’ and the development of new aftercare services envisaged in the report. It is proposed that the NHS rolls-out the ‘Recovery Package’ and ‘risk stratified pathways’ across the country. What this means in practice is that, in future, patients won’t just be abandoned at the end of curative treatment and left to cope on their own. It means that all patients will have a post-treatment care plan; they will be supported to manage the potentially debilitating effects of treatment, such as chronic fatigue or breathlessness, they will be remotely monitored and they have rapid re-entry back into acute care if symptoms reappear. There is strong evidence that this approach delivers better health and well being outcomes without additional cost.

Another strategic priority that will be transformational is the proposal that patient experience should be accorded equal status with clinical outcomes and safety. Why does this matter? One of five patients, surveyed in 2014, said they felt treated like a set of symptoms rather than a person. This is simply not acceptable. The scandal at Mid Staffordshire NHS Trust starkly illustrates the dire consequences of allowing a culture of compassionate care to erode. The report proposes a set of measures to ensure that patient experience is hardwired into the culture of the NHS. This means that the Cancer Patient Experience Survey (CPES), a tried-and-tested improvement tool, will be conducted on an annual basis, and that the survey data will be supplemented by a broader set of patient experience metrics designed to drive continuous improvement.

As I said, the vision is massively ambitious. That’s why there need to be strong ‘enablers’ in place to ensure the strategy is more than just a set of warm words but capable of delivering real change. It’s therefore very encouraging that workforce features prominently in the Taskforce’s six strategic priorities. The current cancer workforce is ill equipped to cope with today’s challenges, let alone tomorrow’s. The Taskforce proposes a more strategic approach to workforce development – something that has been sorely missing in recent years. This means addressing the workforce deficits, for example the shortage of radiologists and clinical nurse specialists (CNS). It means getting the skill mix right and developing new roles, such as 1-2-1 support workers, who can coordinate care and can free up valuable CNS time. And it means equipping the workforce with the skills to work in new ways, i.e. to facilitate shared decision-making and support patients to self-manage.

Another key enabler is boosting local NHS improvement capability. It’s obvious that Strategic Clinical Networks, established in the 2013 NHS restructure, simply haven’t been equipped with the right resources to deliver large scale change programmes, such as pathway redesign care or integration of health and social care. The Taskforce report proposes the creation of new regional ‘Cancer Alliances’ which are ‘properly resourced’ to drive change and ensure local integration of services.

The Taskforce has produced an exciting and ambitious strategic vision which addresses ‘what’ cancer care in England ought to look like as well as ‘how’ we can deliver the key recommendations. The report provides the blueprint for change. Now we must hold the NHS to account to deliver.

A Cancer Strategy for England: turning ambitions into reality’ was authored by Duleep Allirajah, Head of Policy at Macmillan Cancer Support.

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