Cancer survivorship: supporting patients throughout care and beyond

by Suzanne Wait - 16 Oct 2017

A session at this year’s European Society of Medical Oncology congress focused on rehabilitation and survivorship, a crucial element of the cancer care journey for patients.

A few weeks ago, my colleagues and I were among the 20,000 people who attended the European Society of Medical Oncology (ESMO) congress in Madrid. Particularly exciting this year was that the Patient Track sessions were an integral part of the programme – allowing ‘non-clinical’ topics of high relevance to patients and caregivers to be discussed. Such topics typically do not feature in the more clinically focused sessions of these congresses.

Rehabilitation is fundamental in cancer care

Among many excellent sessions, one that most struck me was called ‘Lost in rehabilitation’. The premise was that rehabilitation is a critical part of the cancer care journey for patients, and that greater efforts are needed to embed it into cancer care plans, as well as individual patient care and support. During the session, rehabilitation was defined as the general return of people who had been diagnosed with cancer into society and everyday life – going back to work, trying to resume a ‘normal’ life as men and women, parents, children and friends, developing relationships – and learning to put their diagnosis of cancer behind them, as much as possible.

I heard some incredibly poignant testimonies from cancer patients, talking about how they felt lost in their attempts to resume a normal life after their cancer treatment ended. One woman spoke of her deepest wish to ‘hang up the “cancer patient” label’ after her treatment was over. Another talked about being denied health insurance because of her cancer diagnosis. Many reported the difficulties of returning to work or applying for a new job, or discussing career advancement. The sense of loss was as much in their ability to navigate the nebulous zone of ‘after-care’ as in adjusting to the emotional – and sometimes physical – aftermath of a cancer diagnosis and treatment. As a close friend of mine, who was diagnosed with cancer at the age of 35 with two small kids, said: ‘The treatment is horrible. But the toughest bit is the mental bit – and that never goes away.’

Cancer survivorship: a recent concept

These discussions may not have even taken place 10 years ago – when the notion of cancer survivorship was, in Europe at least, in its infancy. It is a testament to the transformational advances in treatment and care in recent years that the notions of cancer survivorship and rehabilitation are becoming ever more prominent in today’s policy discussions. For example, several academic papers have called for better social and employment policies to support cancer survivors and their employers to enable their return to work. At ESMO, the European Cancer Patient Coalition (ECPC) and ESMO launched the ESMO–ECPC Survivorship Guide, to foster a dialogue between cancer patients and healthcare professionals to help patients return to a ‘normal’ life. It includes a checklist that may help ensure each patient has a survivorship care plan that considers rehabilitation, late effects and second cancer prevention, as well as a smooth return to work as appropriate.

The fact that we can talk about cancer survivorship is, of course, a huge cause for celebration. Many patients whose prognosis previously would have been very limited may now have the hope of living ‘with or beyond cancer’ – often for many years, and with very good quality of life. Some patients may be on treatment for the rest of their lives – but still able to enjoy life. Others may be lucky enough to be considered in long-term remission or ‘cure’ – although this term is still used with great caution in cancer care.

Thinking beyond survivorship

It is so important, however, to remember that survivorship is not available to everyone. One in every three people diagnosed with cancer does not survive more than five years. All of us working in cancer policy or advocacy must always keep in mind the diversity and individuality of the cancer patient experience. I recall, for example, doing work on metastatic breast cancer and reading that, for many women living with the as-yet-incurable condition, the month of October – where the world goes pink and brandishes the pink ribbon representing hope and survival – fills them with dread, as it reminds them of their ‘failure’ to achieve survivorship. These women feel forgotten, or lost, in their cancer experience.

As advocates, researchers, scientists and clinicians, we need to fight for better diagnosis, care and support for patients and their families at every stage of their care, and after-care. This includes recognising the risk of patients feeling lost, forgotten or abandoned at any stage in their experience. We must always think of what matters most to patients – ensuring that no patient, current or former, feels abandoned in their efforts to gain control of their lives, despite cancer.


This blog post was originally published on the All.Can website.

Air pollution: the heart of a health crisis

by Christine Merkel - 19 Sep 2017

Air pollution is a significant contributor to cardiovascular, respiratory and other diseases. And with levels of pollution rising, policymakers must act to safeguard the health of their populations.

Just five days into 2017, one road in London had already exceeded its air pollution limit for the entire year – with many others soon to follow. In ‘mega cities’ such as Beijing, periods of extreme air pollution lasting weeks are becoming the norm. And, shockingly, 2014 figures revealed 92% of the world’s population was living in places that did not meet the World Health Organization (WHO) air quality guidelines.

Air pollution disproportionately affects developing countries. The WHO announced in 2016 that 98% of cities in low- and middle-income countries did not meet air quality guidelines. In high-income countries, meanwhile, this figure was 56%. Considering the health impacts of air pollution – not to mention wider environmental effects – it is imperative that we act to reduce it.

What is air pollution?

Environmental (also known as ambient) air pollution arises from many sources. Among other things, sources include fossil fuel combustion from cars, coal power plants, and solid fuel burning at home. This pollution is a mix of gases and other particles, each of which can be harmful and affect the body differently. These include particulate matter and gases such as ozone (O3), nitrogen dioxide (NO2) and sulphur dioxide (SO2).

Particulate matter (PM) is a mixture of very small particles and liquid droplets that get into the air. This type of pollution affects people more than any other pollutant. When inhaled, PM can penetrate the lungs and even the vascular system. Negative effects have been noted from both very short-term and long-term exposure.

The smallest type of PM (fine PM of 2.5 microns: PM2.5) has been noted by the WHO to have ‘no threshold… identified below which no damage to health is observed’. PM2.5 alone has been estimated to cause 3.15 million deaths per year – and this is set to double by 2050. The greatest burden occurs across much of Asia and the Pacific.

Together, ambient air pollution and tobacco smoking are significant contributors to morbidity and mortality. In the 2015 Global Burden of Disease study, they are the fifth-highest and second-highest risk factors, respectively. I’m not going to delve into ‘personal’ air pollution via tobacco smoking, but it is an avoidable cause of death and disease that directly impacts the health of the smoker and others around them, so could also be argued to contribute to ambient air pollution.

What are the health impacts of air pollution?

Air pollution causes or aggravates numerous diseases and health issues. Some of the most obvious are those associated with the lungs: asthma, emphysema and chronic bronchitis. But even short-term exposure to air pollution can also increase risk of heart attack, stroke and congestive heart failure. Exposure to air pollution has been linked to higher rates of hospital admission and mortality for heart failure and stroke. This puts a significant burden on healthcare systems, not to mention patients and their families.

Risks are magnified among vulnerable groups – minorities, older people, children and people with pre-existing conditions. For pregnant women, pollutants can negatively affect a foetus and cause long-term health problems including congenital heart defects, obesity and predisposition to cardiovascular disease (CVD). Our knowledge of the impact of air pollution in utero is limited, but it has been shown that the ‘dose’ of pollution experienced by the foetus may be relatively higher than that of the mother.

Medical advances have led to more people surviving cardiovascular events and living with CVD, such as hypertension. This means a vast number of people will be affected if governments do not take action to combat air pollution.

What can be done?

Many people – including healthcare professionals and policymakers – often fail to appreciate the cardiovascular health risks of air pollution. The respiratory effects are easier to identify, but long-term exposure to air pollution can also have serious cardiovascular health implications. Although awareness of CVD is growing, the impacts of pollution are still not widely known.

There is clearly a case for change, from both a health and an environmental perspective. But when it comes to ambient air pollution, policymakers and leaders across a range of sectors have a duty to protect citizens. Even modest improvements and incremental change in air quality can lead to increased life expectancy over short timeframes. Whether it’s by reducing traffic, planning healthier cities and developments, passing anti-smoking legislation or regulating industry, there is much that can be done.

But too few countries meet WHO air quality guidelines and, all too often, there is not enough action at a national level. Air pollution control measures face countless barriers; increasing ‘green’ power infrastructure can be economically and politically challenging. Meanwhile, international treaties and national policies are often ‘toothless’ and end up being ignored. But there can be no doubt that this is a public health priority. Until policymakers act to overcome these obstacles, millions will continue to live in – and be harmed by – increasingly unhealthy environments.

What is health? The search for an accurate definition

by Sandra Evans - 06 Sep 2017

We may think we understand what health is, but is there a clear definition? And how has the notion of ‘healthy’ changed over time?

It may seem an obvious question: ‘Do you know what “health” means?’ But there is much debate over the definition.

The World Health Organization (WHO) defines health as ‘a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity’. But how accurate is this? Consider a person who has diabetes and manages it with medication, or someone who has back pain that they manage with physiotherapy. These people are clearly not in a state of complete physical wellbeing. But does that make them unhealthy?

Health: all or nothing?

Perhaps infirmity and disease can coexist with health. This would mean that there is not a binary ‘healthy’ or ‘unhealthy’ state, but rather a spectrum. In our lifetimes, we all experience periods of good and bad health. And we may even experience the two states at the same time.

Huber and colleagues suggest that the problem with the WHO definition is the absoluteness of ‘complete’ wellbeing. This, they suggest, inadvertently contributes to the ‘over-medicalisation’ of the population. It allows a platform for industry, medical technologies and professionals to redefine our health status. In effect, it could imply that no one is ‘healthy’ any of the time, and everyone needs some level of treatment for any given condition. It doesn’t allow the individual to define their own health, and their own health goals.

Resilience and management

When the WHO defined health in 1948, it was revolutionary in its notion that health means more than the absence of disease. However, Huber et al. suggest that, owing to our ageing population and the increasing focus on management of communicable diseases, this definition is no longer fit for purpose. They propose shifting the emphasis of health towards the ability to adapt and self-manage in the face of social, physical and emotional challenges.

This echoes the concept of resilience, which has been defined as ‘the capacity for populations to endure, adapt and generate new ways of thinking and functioning in the context of change, uncertainty or adversity’.

Your life, your health

Thanks to medical advances and disease management, the concept of health now encompasses more than traditional definitions encapsulate. There is a level of health that each of us can aspire to attain. Every person is exposed to a unique selection of beneficial and adverse circumstances over the life course. Ultimately, it is how we manage – and adapt to – these circumstances that defines our health status.

Public health priorities vs. societal realities

by Madeleine Murphy - 29 Aug 2017

Science and policy agree that smoking is bad for health, and breastfeeding is good – so why don’t public attitudes reflect this consensus?

Here are a couple of things we know, thanks to decades of scientific evidence:

  1. Smoking tobacco is bad for health.
  2. Breastfeeding is good for health.

Public health policy reflects this knowledge. In the EU, the revised Tobacco Products Directive in 2016 placed restrictions on the packaging, sale and marketing of cigarettes. In the UK, 2017 marks the 10-year anniversary of the ‘smoking ban’ – legislation that prohibits smoking in public places and workplaces. Smoking prevalence in the UK has since dropped from 20.9% to 16.1%.

Meanwhile, the World Health Organization (WHO) recommends that women breastfeed exclusively for the first six months of the infant’s life, then continue to breastfeed (alongside solid food) for up to two years. EU policy has long promoted breastfeeding, and health professionals advocate it as the best method of infant feeding. However, according to the WHO, the European region has the world’s lowest rates of breastfeeding.

Social attitudes

Why has one of these public health messages been successful, and the other a comparative failure? Although the law says breastfeeding is acceptable everywhere, while smoking is unacceptable in many areas, social attitudes often don’t reflect this. News outlets frequently report breastfeeding women being asked to cover up or stop breastfeeding in public. This can cause shame; in a UK survey, 36% of women said breastfeeding in public was embarrassing. It may be a reason why some women discontinue breastfeeding earlier than recommended.

Smokers are not exempt from social reproach; there is evidence that some feel increasingly stigmatised. But the key difference is that the overall health effects of tobacco are harmful. Worldwide, it kills more than 7 million people every year. Breastfeeding, meanwhile, harms no one and brings numerous benefits to both infants and mothers.

Public health in the workplace

For women to adhere to the WHO recommendation of breastfeeding for up to two years, those who are in full-time employment must be able to express breast milk while at work. EU legislation requires employers to provide a rest break for all employees every six hours, but this may not be frequent enough – nor the individual breaks long enough – for women who need to express milk.

Employers in the UK are required to provide ‘suitable facilities for breastfeeding mothers to rest’. However, the reality faced by many women returning to work is that there isn’t an appropriate area for expressing milk. In many cases, the only space available might be an office or meeting room, offering limited privacy. Some women resort to expressing in toilets for want of a suitable space – an unhygienic and unpleasant experience.

Meanwhile, UK employers are not legally obliged to have designated external smoking areas for employees – yet many do. Despite the compelling evidence to support the benefits of breastfeeding and the negative impact of tobacco, we make it easier for people to smoke than to express milk.

Changing perceptions

If the problem is perception, what can be done to change people’s views? One crucial element may be normalisation of positive health behaviours. Health professionals and breastfeeding advocates have long argued that the solution to negative attitudes to public breastfeeding is promoting it as an everyday activity. The more people see something, the more they accept it as part of life. This is one of the key arguments against advertising infant formula, which can reduce women’s confidence in their ability to breastfeed.

This notion is not unique to breastfeeding. Many countries have banned tobacco advertising. Recent measures taken in the UK include the introduction of standardised ‘plain’ packaging for cigarettes. In Australia, where plain packaging was introduced in 2011, it has been shown to reduce the appeal of cigarettes to adolescents. There is also evidence that, just as peer pressure may encourage young people to take up smoking, supportive peer networks can have a positive influence on people trying to quit.

A holistic policy approach

Public health policy is based on evidence. Conveying this evidence in a way people understand and relate to is not always easy. Anti-smoking campaigns in several countries, particularly the UK, have had a positive impact. Breastfeeding promotion, meanwhile, has failed to strike a chord with the public, despite overwhelming evidence.

Perhaps we need to take a more holistic approach to health promotion. The Royal College of Paediatrics and Child Health recently recommended that ‘familiarity with breastfeeding’ should be included as part of statutory personal, social and health education in UK schools. An intersectoral approach could be effective in normalising breastfeeding and guiding public opinion. But it is essential to strike the right balance between recommendation and instruction. As soon as public health guidance starts to feel like pressure, there is a risk of alienating people. And that’s when messages stop getting through.

Achieving public health goals requires hard work, but the success of promotion around smoking cessation shows what can be achieved. To have a real effect on mainstream health behaviours, policy and public opinion must move in the same direction. This can be challenging, but it’s a challenge worth facing to improve the health of the population, both today and for generations to come.

Innovation in health service delivery: elegant solutions to transportation barriers

by Christine Merkel - 09 Aug 2017

Collaboration with tech companies has potential to introduce innovation that combats barriers to accessing healthcare.

Innovation in healthcare delivery seems to be everywhere right now, particularly with the burgeoning market for apps. I recently read a paper that pushes innovative delivery of healthcare into new realms. Nonemergency Medical Transportation: Delivering Care in the Era of Lyft and Uber, by Powers et al., describes collaboration between ride-sharing apps and healthcare providers, which is making headway in breaking down barriers to attendance of non-emergency care appointments.

Patients with the highest burden of chronic diseases typically have some of the greatest transportation barriers. In 2005, approximately 3.6 million individuals in the United States failed to receive non-emergency medical care because of such barriers. This ride-sharing innovation could be an important step to improving access to care and, eventually, health outcomes – particularly for elderly, poorer and minority groups.

Service improvements

The article describes early results from a pilot programme between a payer and Lyft, which provides a dramatically better service than the existing options of traditional taxis or livery services. It demonstrated 30% shorter waiting times and patient satisfaction of over 80%. Furthermore, it was estimated that the cost per ride was reduced by a third over the typical service. A dedicated web-based tool allows caregivers, nurses and patients to book rides and track them in real time. This means that not having a phone is no longer a barrier to digital transportation services.

Another trial, in a different area and with another care provider, used Uber. It noted no-shows being just 8% of all rides, compared with 25–50% for traditional services. Clearly, there is a significant opportunity to improve care and access, while saving costs in the long term.

There are many possibilities for such services, beyond transporting people to and from appointments. They could deliver medication, support carers in their activities, or support a wide range of other health or social services.

Digital transportation services are also aiming to revolutionise travel for disabled passengers. There is huge potential to allow greater freedom and ability to travel than ever before. Traditional transport is known to be expensive and unreliable; with digital transport services, people can book adapted cars and drivers can receive additional training.

Implementing innovation

Of course, such services will always have hiccups and more endemic issues. It is essential that drivers be provided with adequate training in the needs and challenges of these specific groups of passengers. Then there is the perennial issue of access. Many of these services are only available in urban areas, and accessible cars may not be an option in all markets.

The Powers et al. study was carried out in the United States, so may not be entirely applicable across the UK and Europe, which often have better public transport infrastructure. But tremendous barriers still exist in attending healthcare appointments – especially for people with a low income or mobility issues.

There must be better support for people with chronic diseases and underserved groups to attend non-emergency appointments. People should be helped to access readily available care, particularly those in rural populations and lower-income groups. Improved access through innovative delivery of care, such as digital transport providers, seems a simple – even elegant – solution. I think there is significant potential here; in a challenging healthcare economy, we need to think outside the box. Healthcare providers should consider collaborating with seemingly untraditional partners, to reduce barriers to care and support people to manage their health.

Mental health: designing and delivering services with the public

by Sandra Evans - 03 Aug 2017

Person-centred care is fundamental to mental health provision, empowering people to take charge of their own health and behaviours through understanding and collaboration, rather than enforcement.

Mental health is one of the most prominent issues in healthcare today. From my experience of working in mental health, I’ve come to learn that person-centred care is essential to empowering individuals to work towards recovery.

What is person-centred care?

There are various definitions of person-centred care. The Health Innovation Network South London explains it concisely:

‘Person-centred care is a way of thinking and doing things that sees the people using health and social services as equal partners in planning, developing and monitoring care to make sure it meets their needs. This means putting people and their families at the centre of decisions and seeing them as experts, working alongside professionals to get the best outcome.’


Person-centred care is not a new concept. National guidelines – such as National Institute for Health and Care Excellence (NICE) guidance in the UK – state the importance of person-centred care in caring for people with mental health conditions.

However, understanding of person-centred care, such as common definitions and guidance on implementing it in practice – is not well established. This can result in scepticism and tokenistic engagement of patients and carers.

Experts by experience

Healthcare professionals may be experts by training, but patients and carers are experts by experience. Given that they are the ones for whom the service exists, we should be listening to them about what they want and need.

It is not enough to consult these experts by experience as a second thought – they need to be involved in the decision-making process from the beginning. The views of clinicians and policymakers on what is important to a person’s recovery might be worlds apart from that person’s own perspective. Involving experts by experience at every level of decision-making ensures that the service on which we are spending money is actually beneficial to those whom it is for.

Gellinudd Recovery Centre: co-designing a mental health service

In Wales, a mental health centre recently opened that has been co-designed and co-delivered with experts by experience. Designing the centre took three years of consultations – the experts by experience met with the architects and designers throughout the process, and were involved in the development of the centre’s holistic approach. Gellinudd Recovery Centre is a great example of meaningful engagement and person-centred care.

Guests and staff at the centre meet regularly, to develop and evaluate the service and their holistic approach. This approach looks at work, relationships, finance, sociocultural and spiritual beliefs, education, accommodation, medical and psychological interventions, and wellbeing.

Person-centred care in all health policy

Empowering people to take charge of their own health status and behaviours is both ethically advantageous and cost-effective. Studies have shown that improving individuals’ self-management and involving them in shared decision-making can lead to reductions in future service usage.

Person-centred care and meaningful engagement with people who are experts by experience should be a staple of all health policy and practice. Mental health, obesity, heart disease, diabetes and cancer are today’s – and tomorrow’s – major global health concerns. These conditions are associated with certain behaviour patterns linked with individuals’ wellbeing, environment, resilience and support systems.

There are numerous positive public health interventions, such as tobacco control, alcohol minimum pricing, and taxes on high-sugar food and drink. But these should be part of a package of interventions that focus on empowering people to change their behaviours for themselves – and not just because an unhealthy lifestyle costs more.

This goes beyond the traditional health promotion tools of taxation, information provision, legislation and so on. We need more research and investment in designing services that involve people, and allow individuals to be involved in every step of the decision-making process. This will allow everyone to be an active contributor to not only their own health, but also the wider healthcare system and overall environment.

To read more about this topic:

The Health Policy Partnership has published previously on mental health, person-centred care and public involvement in health. See the relevant sections on our Publications page, or read our global synthesis report on The state of play in person-centred care.

Digital health: a patient-first approach is key to progress

by Kirsten Budig - 24 Jul 2017

Most areas of life in Europe have embraced digital technology, but healthcare has been slow on the uptake. To integrate new technologies successfully, we must let patients’ needs lead the way.

A couple of years ago, I met the Technical Lead of an EU-funded eHealth pilot. The pilot provided a remote monitoring system to about 3,000 people with a non-communicable disease. The patients could input their health data and access educational materials, as well as consulting directly with healthcare professionals. When I met the Technical Lead, the pilot had just ended. Although comprehensive evaluation data were not yet available, its chances of success seemed limited and below expectations. Since then, the project’s website has been shut down and it has sunk into obscurity.

There is no lack of pilots and research projects in digital health in the EU. A 2016 European Commission report counts 158 EU-funded projects in the area of health, wellbeing and ageing. Together with private-sector initiatives and start-ups, this paints a picture of a blossoming digital health landscape. But it also demonstrates something problematic – a ‘pilot-rich but proof-poor’ environment.

Reflecting on the possible flaws of the project mentioned above, the Technical Lead noted a lack of understanding on the part of researchers and payers. They didn’t understand what healthcare service users expected and needed from digital health interventions, what their concerns were, and how much they were willing to invest to access such innovations.

Gaining this understanding is difficult. The group of people who may benefit from digital health is incredibly diverse: from digital natives and social media gurus to people who may be unfamiliar with digital technology or have security concerns. It also encompasses a variety of healthcare needs, including people with chronic conditions, those with acute disease, and many others. Members of the same family may have completely different opinions regarding how much health data they feel comfortable sharing, and with whom.

Why the slow uptake of digital health?

Information and communication technology has permeated almost every aspect of day-to-day life. In 2016, over 80% of EU citizens aged 16–74 used the internet. It seems bizarre, then, that digital technologies are still not integral to our health systems.

There are signs that the public is ready for digital health: in the 2016 Philips Future Health Index survey, more than 77% of respondents attributed great potential to connected health. Many people already share health information online when seeking advice, and there is evidence that most people are willing to share their electronic health record with their healthcare professional. (Furthermore, it is questionable whether current methods of storing patient data are safer than storing them digitally.) This public readiness should be acknowledged, and acted on.

Bringing digital health to the front line

It is essential to align eHealth strategies and services with patients’ needs and perspectives – this is the only way to truly foster patient empowerment and adoption of eHealth. This means identifying patients’ needs and involving them in the design process of any eHealth intervention.

Some interesting examples of patient-led innovations include:

It is necessary to ask how we can cater to a wide range of needs – especially those of people who could potentially benefit most from eHealth interventions, but are more likely to have problems accessing them, e.g. elderly people and marginalised or vulnerable communities. In the face of such diversity of users, solutions must recognise and develop local diversities.

Patient-led innovation is an excellent first step, but to effect real change in our healthcare systems, we need shared standards and structures in place. This will allow end users to easily access and adopt digital health.

Progress can only be achieved through a system-wide approach; otherwise, health services may not keep up with new innovations. As David Maguire, Economic and Data Analyst at the King’s Fund, has pointed out: ‘If interoperability is not embraced [by health services] in the same way it is by the public, then one day you might have to bring your mobile device along to your appointment just to let your doctor borrow your integrated care record.’

Dignity must be at the heart of care for older people

by Lisa Wilson - 19 May 2017

Dignity and respect should be the cornerstones of care for older people, but is this the reality in the UK’s hospitals?

We all know someone older than us. We are an ageing society. And we expect that, as people age, they are entitled to appropriate and compassionate care – particularly when they become ill or vulnerable.

It has been four years since the publication of the Francis report – a public inquiry into the role of the commissioning and regulatory bodies in monitoring the Mid Staffordshire NHS Foundation Trust. The report found that hundreds of people suffered unnecessarily and were failed by a system that ignored the warning signs of poor care. But since then, how much has changed – and what still needs to change to ensure dignity, good care and respect for older people?

At the heart of things, there is (as there has always been) a core of committed NHS staff who work tirelessly to provide the best possible standards of care. We would do well to remember that, and recognise their contribution to our health service in the face of immense pressures. Alongside this, the Patients Association continues to work on behalf of patients and their families when care is not what we would hope.

Changes for the better

The good news is that much has changed since 2013, and accountability at all levels has increased. For regulators, there have been significant changes. The Care Quality Commission (CQC) has five core questions for inspections, throughout which run the themes of dignity and respect:

  • Safety
  • Effectiveness
  • Caring
  • Responsiveness to people’s need
  • Leadership.

The CQC states that people must be treated with dignity and respect at all times. This includes the provision of privacy, equal treatment for all and support to help people remain independent and involved in their communities.

It is embedded in the NHS Constitution that we all have a fundamental right to be treated with dignity and respect. But research by Age UK found that only 31% of the British public feel that older people are treated with dignity and respect in hospitals. Clearly, we’ve got some work to do to understand what we mean by those terms – and then apply them in practice.

One of the challenges of addressing dignity is that it affects all aspects of a person’s life. We cannot fix one aspect of care and ignore others. While regulation now aims to address the fundamentals of what dignity means in hospitals and care homes, what about the community, domiciliary care and support services?

There is much going on at a community level, but the challenges are immense. For every example of kindness, compassion and dignity linked to a fantastic initiatives like Nutrition and Hydration Week or the Malnutrition Task Force (and there are many), there are cutbacks that threaten these efforts. Research for the National Association of Care Catering reveals that just 48% of authorities currently provide a service, compared with 66% only two years ago. This increases vulnerability, hospital admissions and the number of older people at risk of malnutrition. In addition, research from 2016 found an increase in hospital beds taken up by people with malnutrition. This rise in malnutrition has been linked to increases in poverty and cutbacks in community services and the voluntary sector.

Where do we go from here?

Four years after the Francis report, there have been changes, but the cogs are slow to turn. Dignity runs through every aspect of the way we relate to older people. We can provide training for healthcare professionals, but how do we ensure that the older person in the hospital bed is spoken to, not merely spoken about? How does a home carer make someone feel valued when they only have 15 minutes with that person? How does an older person not feel like a burden when everyone around them appears overworked and undervalued? How can we help people to stay independent and healthy as they age if we remove the services that enable them?

I’m not sure there is a template, but it is clear that we need more resources, more support and more focus on older people’s issues. In the meantime, we regulate where we can, we consider people’s needs as they age, and – at some point – it comes down to simple humanity. Treat others as you would wish to be treated. Keep telling the stories and pointing the finger at the bad and the good. One day, we will all be old. Let’s age with dignity.

The data dearth hampering heart failure care

by Christine Merkel - 08 May 2017

Despite affecting 15 million people across the EU, heart failure is poorly understood and many countries have no organised programmes to manage the condition. This is, at least in part, because we are not collecting adequate data.

Data have an impact on every decision in healthcare – at least, that should be the case. Collecting accurate and reliable information is essential in improving quality of care and patient outcomes. Yet, in heart failure, data collection seems to have fallen by the wayside. In many cases, the only available figures are more than 10 years old; in others, they are not representative – or simply don’t exist. Even in countries with seemingly good data collection, there are still many aspects of care that are not fully understood.

Why data?

Accurate and comprehensive data on heart failure across Europe are scarce. This should not be the case for a condition that affects 15 million people in the EU. The dearth of data has serious consequences for those living with heart failure, which will continue to be felt for years to come if policies remain unchanged.

We know that the management of heart failure is extremely variable, both within and between countries. But in some cases, this is as much as we reliably know. We urgently need accurate and up-to-date data on the numbers of people living with heart failure, what services they have (or don’t have) access to, which health professionals they see and how often. Without understanding these elements, significant and unacceptable variations in care will endure.

The limitations of available data may have played a pivotal role in the lack of policies and programmes for heart failure across Europe. For example, only seven of 26 European countries have organised heart failure programmes. This would be unthinkable for some diseases, but progress in heart failure is slow. We know what to do in heart failure, but we are not doing it properly or applying it consistently. Without strong and continued advocacy from all stakeholders, neither data nor policy can be expected to improve.

Why do we lack data in heart failure?

The absence of data stems from many areas, including lack of political oversight and commitment, few processes for data collection and, in some cases, limited understanding of the importance of data collection, evaluation and quality improvement. It will take a major overhaul of both systems and attitudes to establish data collection and evaluation as a central component in heart failure national plans. But it will be an essential step to take.

Even in countries where heart failure data are consistently collected – for example, the UK and Sweden – there are still many aspects of care that are unquantified. These include delays to diagnosis, access to a multidisciplinary team, and what follow-up and educational initiatives are available. Despite these gaps, plans and policies in countries with ingrained data collection are, unsurprisingly, light years ahead of those countries without basic data. Plans in these countries are far from perfect, but the data provide opportunities for monitoring and evaluation to make continuous and sustainable improvements in care – benefiting both patients and the healthcare system.

State of Play in Heart Failure

Having come up against the issue of scarce or incomplete data time and time again, the Heart Failure Policy Network began research into the State of Play in Heart Failure in 2016. It aimed to understand what is and isn’t working across Europe, including what we do and don’t measure. Without a credible and reliable synthesis of the available data – and understanding of where and why there are gaps – advocacy will continue to move slowly.

The State of Play series looks at three aspects of heart failure care: diagnosis, clinical management and person-centred care and self-management (coming soon). Each is an essential – yet often suboptimal – area of care in heart failure. The three summaries will come together to form a comprehensive State of Play in Heart Failure report, to be launched later this year.

Clearly, generating evidence alone is not sufficient. Tireless work from many stakeholders is required to implement improvements from the data. But without reliable information to begin with, policymakers face an uphill battle to create effective policies to care for the millions of heart failure patients across Europe.

For more about the State of Play and the Heart Failure Policy Network please see

Success in sarcoma policy: lessons for rare cancer communities

by Shannon Boldon - 24 Apr 2017

Patients with rare cancers face a common set of challenges. Sarcoma provides an interesting model of successful policy initiatives from which other rare cancer communities could benefit.

Rare cancers are defined by Rare Cancers Europe as those with a prevalence of fewer than five cases out of a population of 10,000. While specific rare cancer communities often lead research and advocacy initiatives within their own sphere, many of the issues they face are mirrored by other forms of rare cancer. Most of these issues are linked to their rarity and the consequent difficulty in finding specialist care.

In recent years, the sarcoma rare disease community in Europe has been making great strides in the policy and advocacy arena. In February this year, the Sarcoma policy checklist was launched. Developed by a multi-stakeholder policy group, it offers concrete policy recommendations on where efforts are most needed, and looks at how six EU countries are doing in these areas. Additionally, the European Reference Network for Adult Cancers (solid tumours) (ERN EURACAN), including sarcoma, was launched in March 2017. It provides a dedicated network for cross-border collaboration on sarcoma care.

Priority areas for policymakers

The Sarcoma policy checklist recommends five priority areas for policymakers to improve sarcoma care for patients. It also outlines ongoing initiatives in each domain.

Five domains to focus policy initiatives in sarcoma
1. Designated, accredited centres of reference for sarcoma in each country
Most of the countries examined have centres of reference for sarcoma; however, they are often not designated by official quality standards, nor are accreditation systems in place to monitor care over time
2. Greater professional training for all healthcare professionals involved in sarcoma care
Often, training on rare cancers is not included in the general medical curriculum, nor in the oncology curriculum. Because sarcoma is so rare, many healthcare professionals may go through their entire career without coming across a single case of sarcoma
3. A multidisciplinary approach to care for every patient with sarcoma
Most national guidelines recognise that the organisation of sarcoma care in multidisciplinary teams is key to providing high-quality sarcoma care to patients
4. Greater incentives for research and innovation
Funding for basic research in sarcoma is inadequate. Greater funding of public–private partnerships is needed
5. More rapid access to effective treatments
There is a need to improve access to effective treatments for patients and to reduce inequalities

The new European Reference Network

At the European level, the newly established ERN EURACAN will connect 900 highly specialised healthcare units and 300 hospitals from 26 countries. European Reference Networks aim to tackle complex or rare medical conditions that require highly specialised treatment, a concentration of knowledge and resources. They allow for patient cases to be reviewed among a ‘virtual’ advisory board of medical specialists in different disciplines through an IT platform and telemedicine tools. The idea is that the medical knowledge and expertise – rather than the patients – will travel.
ERN EURACAN is the first European Reference Network to be established for rare adult cancers, and one of few European Reference Networks dedicated to cancer. ERN EURACAN for sarcoma aims to reach all EU countries within five years and develop a referral system to ensure at least 75% of patients are treated in a EURACAN centre.

European Reference Networks: what advantages might they bring for sarcoma research and care?
Greater opportunities for patients to participate in clinical trials and receive optimal treatment and care through cross-border collaboration
The creation of registries and consolidated collection of real-world data, working to agreed common standards
The development of quality assurance mechanisms for laboratory testing
Training and education tools for health professionals
Accelerated exchange of information, biological samples, radiological images, other diagnostic materials, and e-tools for telemedicine between participating centres

Sharing best practice

Both the Sarcoma policy checklist and ERN EURACAN provide good examples of policy initiatives that can be shared and modelled among other forms of rare cancer to improve care. In this age of scarce resources, it does not make sense to reinvent the wheel – instead, we should learn from one another and build on best-practice examples, or shape them to fit local contexts.


To read more about this topic:

Download a copy of the Sarcoma policy checklist.