Author Archives: vgwoods

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

 

Don’t underestimate the value of a good experience

Last year the number of people living with cancer in the UK was estimated at 2.5 million. And assuming that all existing trends continue, this number is projected to increase to 4 million by 2030. At Macmillan, we think this makes it more important than ever to ensure cancer patients not only get the most appropriate treatment, but that they also have a good experience of care.

All patients should have a positive experience of care and be treated with the highest levels of dignity and respect throughout their cancer journey, regardless of who they are or where they live. While an extreme example, the shocking events at Mid-Staffordshire NHS Trust showed that too many people were not being treated with dignity and respect: patient experience was not a priority. This is despite the NHS Mandate clearly stating that it aims for a health service ‘where compassionate care and patient experience are as important as clinical outcomes’.

Because support for people affected by cancer is central to everything that we do at Macmillan, we want to see patient experience as a priority. Unfortunately, our evidence shows that across the NHS, patient experience is still not regarded as having equal importance as clinical outcomes and that there is unacceptable levels of variation in patient experience.

Experts we’ve spoken to tell us that this is because patient experience is not meaningfully prioritised at all levels of the system.  For example, when hospital boards raised patient experience as an agenda item, only 5% of these items had further actions attached to them.

We can see the knock-on effects of this in the results of the National Cancer Patient Experience Survey (NCPES) for England. This survey is an opportunity for patients to voice how they felt about the care they received and in so doing, provide valuable feedback to hospitals about what is working well and what isn’t. This can then be used to drive meaningful improvement on the ground.

Unfortunately, what recent survey data has shown is that there is a lot of room for improvement. A snapshot of the 2015 NCPES found that 1 in 5 did not have a good overall experience of care and more than one in 10 patients felt they weren’t always treated with dignity and respect.

The Independent Cancer Taskforce published its Cancer Strategy for England in July last year, setting out its recommendations for how to improve cancer care over the next 5 years. One of the recommendations was that a metric, or set of metrics, was developed “that would encourage providers and commissioners to focus more consistently on improving people’s experiences of their care, treatment and support”.

Macmillan lobbied for this recommendation on the basis that embedding a metric in accountability mechanisms sets out clearly that patient experience is a national priority, and pushes NHS England, hospitals and others to do more to improve how people living with cancer experience their care.

This is the first time that it has been recognised at a national level that how someone experiences their care can be just as important as the result of their treatment. Patient experience now sits alongside other key indicators of cancer care quality – such as one-year survival and cancer waiting times – in the CCG Local Improvement and Assessment Framework as well as the Cancer Dashboard.

We believe this is a critical first step in being able to reach the aim set out in the NHS Mandate to make compassionate care and patient experience as important as clinical outcomes.

Now we want to see this become a reality for every cancer patient. That means NHS England needs to start thinking about how it can go beyond the metric and use the data and information on patient experience to drive meaningful year on year improvement in patient experience. This requires action at all levels – from each individual healthcare professional, to hospital boards and trusts, commissioners and system leaders and only then will patients really experience an improvement in their care.

Victoria Woods, Senior Public Affairs Officer, @vgwoods