Blog

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 www.hfpolicynetwork.eu

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.

Schools in England are failing children with medical conditions

by Madeleine Murphy - 07 Apr 2017

Schools across England are failing to provide adequate care for children with health conditions, despite a legal requirement to do so, according to data from a charity alliance.

It is a legal requirement in the UK for schools to have a medical conditions policy in place. The law was introduced as part of the Children and Families Act 2014. On behalf of the Health Conditions in Schools Alliance, of which it is a member, Diabetes UK set out to discover how many schools were meeting this requirement. Of the 200 schools across England that the charity investigated:

  • 132 (66%) failed to demonstrate that they had a medical conditions policy
  • 45 (22.5%) had a policy that missed one or more of nine key statutory requirements (see Table 1) so was evaluated as ‘inadequate’
  • Only 23 (11.5%) demonstrated that they had an adequate medical conditions policy, meeting all nine statutory requirements.

 

Table 1. Statutory requirements of a school’s medical conditions policy
Provision for training, including a plan for staff absences
Measures for inclusion in all school’s activities, without requiring a parent to attend
Mention of the statutory duty
Procedures for emergency, including a plan to make all staff aware about which children have medical conditions
Procedures for communicating with parents and guardians
Roles and responsibilities
Revision within the last two years
Procedures for management and storage of medication
Mention of Individual Healthcare Plans

 

That almost 90% of the schools could not present an adequate medical conditions policy is extremely worrying. Potentially life-threatening conditions such as diabetes, epilepsy and asthma affect tens of thousands of children. These conditions often require continual treatment – a child with type 1 diabetes will usually require an injection of insulin at least four times a day. And ongoing treatment doesn’t necessarily prevent medical emergencies: approximately 30% of children with epilepsy have breakthrough seizures despite being on medication. It is recommended that, to stop prolonged seizures from progressing to potentially fatal status epilepticus, children receive rescue medications (benzodiazepines) within 5–10 minutes of seizure onset. But for this to be possible, there must be someone present who is able to administer those medications.

Yet teachers are seldom offered training on epilepsy or seizure management at all, let alone how to administer rescue medications. While some school staff may be trained to administer daily medications, such as insulin injections for children with diabetes, there is a lack of knowledge around how to handle medical emergencies. And children can’t rely on school nurses: according to the Royal College of Nursing – following a 10% drop in the workforce between 2010 and 2016 – there are just 2,700 school nurses in England, providing care for more than 9 million pupils.

Daily struggles for children with health conditions

Children with health conditions face numerous challenges. Parents of children with diabetes have reported that their children have been excluded from activities and after-school clubs. Some have had to sit exams without appropriate support, which can have a hugely damaging effect on their academic development.

For children with epilepsy, dependence on a trained caregiver to administer medication may make them particularly vulnerable to stigmatisation and poor social integration with their peers. There is also a detrimental impact on parents, who must always be ‘on call’ for their children.

Diabetes UK shared the story of one mother who reported that her son’s school had placed his life in danger. The boy, who has type 1 diabetes and coeliac disease, experienced a low blood sugar episode and his school failed to call an ambulance immediately, calling his mother instead. While the Department for Education acknowledged that the school was at fault, the mother was told that it was up to her to resolve the issue with the school or governors.

Ensuring adherence to the law

But if the Department for Education won’t hold schools accountable for failing to adhere to regulations regarding medical conditions, what incentive is there for them to do so? Will a school wait until a potentially catastrophic incident occurs before implementing the necessary policies?

The Health Conditions in Schools Alliance wants the Department for Education to do more to make schools aware of their legal responsibility to put these compulsory policies in place. It is also calling on Ofsted, the schools inspectorate and regulator, to start checking whether schools are complying with the legislation.

The challenge for schools

Of course, it’s not a case of schools simply not bothering to follow the rules. Across England, schools face serious cuts to resources. Some schools are reported to be considering reducing the number of teaching hours because they cannot afford enough teachers to cover the timetable. Meanwhile, class sizes in UK schools are among the largest in the world; the number of secondary school children in England being taught in classes of over 35 pupils has trebled in the last five years.

With the current crisis in school funding, there have even been reports that mainstream schools may have to turn away pupils with special educational need and disabilities, as they simply do not have the resources to support them.

The need for a whole-system approach

There’s no easy solution. Lack of funding is a problem that permeates every level of society, with both healthcare and education in England facing ongoing cuts. But it is not acceptable for schools to ignore legislation on implementing crucial health conditions policies.

The only way to address this issue is through a whole-system approach, where the education and health sectors work together with parents and children. Policymakers in both health and education must provide joint guidance and ensure schools have the resources to address the needs of children with medical conditions. Many things are inevitably sacrificed when funding is scarce – but children’s safety and right to education must not be among them.

 

To read more about this topic:

The Health Policy Partnership has published previously on policies relating to the administration of emergency medication for children with epilepsy in schools. See the ‘childhood epilepsy’ section on our Publications page.

HPP goes to ICHOM Conference 2016

by Daniel Han - 20 Jul 2016

 

On 16-17th of May, Ed Harding, our managing director, and I attended the 2016 International Consortium for Health Outcomes Measurement (ICHOM) conference. Led by Michael Porter and his colleagues, ICHOM is a global organisation of leading clinical networks, top universities, public health authorities, pharma and med tech firms united under the concept of value-based healthcare.

Delegates at ICHOM conference

(Photo Credit: ICHOM)

 

 

 

 

 

 

 

 

 

 

At the heart of ICHOM is the notion of value-based healthcare (VBH), where value is defined as health outcomes divided by the resources needed to deliver these outcomes [1].  This notion is a real departure from traditional cost-containment approaches, which usually focus on narrow and linear cost-cutting measures. It also focuses measurement of outcomes based on what matters most to patients, rather than traditional quality metrics, which have typically focused on procedural compliance, number of patients treated and activities performed [2]. Professor Michael Porter, one of the ICHOM founders, maintains that this lack of focus on what matters most to patients has led to lower quality of life for patients through prolonged hospitalisation and rehabilitation, as well as additional costs to the system. Therefore, VBH seeks to re-align payers and providers around the notion of value by measuring and maximising what matters most to patients, rather than minimising costs alone.

 

Professor Michael Porter explains the significant role of value-based healthcare in improving health systems around the world.

Professor Michael Porter explains the significant role of value-based healthcare in improving health systems around the world.

 

To provide a common vision and language for all stakeholders, ICHOM has developed over 20 standard disease outcomes sets covering 45% of the global disease burden, through consultations with professional societies, patient groups, and researchers to define the most meaningful outcomes from the patient’s perspective [3]. Over 400 organisations and 13 national registries in 32 different countries have implemented the standard sets in recent years with great success.

The initial reports are promising. For example, a prostate surgery specialist clinic in Germany improved patient’s quality of life by significantly reducing cases of erectile dysfunction and urinary incontinence while maintaining the same clinical standard for post-surgery 5-year survival rate, in comparison to the national average. VBH-driven teamwork, patient engagement, and outcomes transparency made such achievements possible.


Impact of Value-Based Healthcare: Prostate Cancer Care in Germany (2012) [2]

Prostate Cancer Surgery Outcomes

Percent of Patients in 2011-2012

National Average

VBH-implementing hospital

5-year survival rate

94%

95%

Severe Erectile Dysfunction
after one year

75.5%

34.7%

Urinary Incontinence
after one year

43.3%

6.5%

Severe Urinary Incontinence
after one year

4.5%

0.4%

Through stepwise conversations around the standard outcome sets as the final goal, multidisciplinary care teams work together to redesign and optimise care pathways for patients. Patients are consulted in each step of care pathway, from the moment they set foot in the hospital to outpatient care, through patient-reported outcome measurement surveys. Transparent outcomes data sharing among stakeholders harness the power of big data analytics to identify and disseminate best clinical practices in real-time at a speed much faster than the traditional benchmarking processes. Consequently, patients consistently report higher levels of satisfaction and quality of life. Also, despite the high upfront costs to implement VBH, in the long term the system-wide costs have been found to decrease as well.

For the 900 delegates attending, the ICHOM conference provided an exciting opportunity to how implementing a value-based approach to healthcare, focused on what matters most to patients, could be implemented at a system level. Going forward, it would be interesting to see how ICHOM’s standard outcomes sets will evolve to accommodate the areas not yet measured with quantitative metrics such as patients’ individual, subjective experience throughout the care pathway.

ICHOM’s standard sets are a significant step forward in putting the patient at the centre of measuring and improving the quality of care. How their use will ultimately improve the individual experience of patients in terms of the levels of dignity, compassion, and respect they feel, remains to be seen.

References

[1] Porter ME. What Is Value in Health Care? New England Journal of Medicine 2010;363(26):2477-81.

[2] Åkerman CR, Stowell C. Measuring Outcomes: the Key to Value-Based Health Care. A Harvard Business Review Webinar: Harvard Business School, 2015.

[3] Porter ME, Larsson S, Lee TH. Standardizing Patient Outcomes Measurement. New England Journal of Medicine 2016;374(6):504-06.

 

Heart Failure Awareness Day – a time to come together online?

by Christine Merkel - 15 Jul 2016

Heart Failure Awareness Day is a day designed to raise the profile of heart failure (HF) among the general public, with particular note to its symptoms, need for a timely diagnosis and optimal treatment. Across Europe, only 3% of people can properly identify the main symptoms of HF and many (incorrectly) think that HF is a normal consequence of ageing.[i] Clearly it is important to raise awareness and understanding of the signs, symptoms and the seriousness of this condition.Red flag symptoms

The HF Policy Network is a multidisciplinary group of politicians from across Europe working with patients, health professionals and other stakeholders to lead significant policy changes that may improve the lives of people with HF. The Health Policy Partnership acts as secretariat of the network, for more information, please see http://www.hfpolicynetwork.eu/.

HF Awareness day was a major milestone in the years’ activities for the HF Policy Network in order to raise awareness of HF and the need to create comprehensive policies. Working on the social media campaign, however, there were several key aspects of the day which may be preventing the messaging reaching the widest possible audiences. Which really, is what HF Awareness Day should be all about.

One of the first challenges that HF Awareness Day faces is the lack of cohesion and coordination of campaigns. In 2016, the day was held on 6th, 7th and the 8th of May in most countries, with in-person awareness raising events organised by national heart failure societies in hospitals and town centres.[ii]  But the lack of one ‘unified day’ is a serious barrier wider impact of the awareness day. Having one chosen day would allow for the different events to combine communications and publicity activities, which would surely be mutually beneficial for all the parties involved, allowing publicity and events to be mutually re-enforcing. This seeming lack of oversight and leadership in HF Awareness Day (not to mention the other 364 days of the year) just further enables this chronic condition to be neglected by policymakers.

Penilla Gunther

This timetabling challenge set aside, I was acutely aware how little occurred online. It seemed that the majority of the activities on social media were carried out by a small group of very dedicated HF advocates across Europe – most notably Pumping Marvellous Foundation, iHHub and the HF Policy Network Members. As people across the globe, particularly the young, [iii]  increasingly get their news and live their lives online, I find the lack of HF Awareness Day activity on social media from some of the biggest and most influential actors unfathomable. Awareness Day activities, be it for HF or any other health area, must be able to engage confidently with concise and interesting content online. A greater presence  of HF online will make a great move towards increasing the awareness of this often forgotten disease.

Social media activism and awareness raising activities often receive a significant amount of criticism – some campaigns deserve criticism and others less so. Certain social media health awareness campaigns provide little more than lip-service to a cause and with little in the way of information on the topic or any way where people can find out more, for example, changing the colour of a profile picture does not necessarily inform others about a cause. Without a way of linking the action on social media with information, it is difficult know what the new found ‘awareness’ actually is within the individual.

Hospitalisation statYet, there are examples of fantastic campaigns which demonstrate how social media can reach a vast number of people in a short amount of time. Even a small show of support, such as the sharing of a simple graphic in enough numbers, can even help shift cultural norms.[iv] In our HF Awareness Day Campaign, we tried to always include evidence based suggestions and hard facts to engage and be shared on twitter. The most well received tweets were almost always graphical content which is easily shareable and contained interesting and sometimes shocking facts about HF.

Looking towards our next milestones, it is important to understand the remit of the HF Policy Network that awareness of the condition is necessary to drive policy change. Social media is a key part of the puzzle when trying to bring about greater awareness of HF at all levels of the healthcare continuum, from policy makers to the general public, who all have a part to play in the policy process. But it is vital that these different groups work together and mutually re-enforce activities to increase awareness of HF overall – which should be the ultimate goal. With greater leadership, oversight and cohesion we will #changeHFpolicy.

HF Twitter Banner

 

[i] Remme WJ, McMurray JJ, Rauch B, et al. Public awareness of heart failure in Europe: first results from SHAPE. European heart journal 2005;26(22):2413-21.

[ii] https://www.escardio.org/The-ESC/Communities/Heart-Failure-Association-(HFA)/Advocacy-&-Awareness/heart-failure-awareness-day-2016

[iii] http://ec.europa.eu/eurostat/statistics-explained/index.php/Being_young_in_Europe_today_-_digital_world

[iv] http://blogs.scientificamerican.com/psysociety/marriage-equality-and-social-proof/

Breast cancer – a disease still far from being defeated

by Emily Kell - 11 Jul 2016

The breast cancer awareness and advocacy movement has gained a great deal of support in the past few decades. Since as early as the mid-1970’s, women with breast cancer have campaigned fearlessly to improve the quality of the care they receive, raise awareness of their needs and develop sustainable funding streams for greater research and innovation. By the turn of the 21st century, small grassroots campaigns had transformed into well-funded international breast cancer organisations, which helped to de-stigmatise the disease and bring it into the mainstream.

Every October during breast cancer awareness month, our media shares carefully chosen images of vibrant women dressed in pink, running marathons, and sharing beauty tips. Breast cancer is now seen as a battle that can be won, and the ‘pink ribbon’ movement symbolises a culture of survivorship and hope. Women who successfully ‘beat breast cancer’ are portrayed as heroes.

Yet the optimistic image of this breast cancer movement does not sit well with everyone – particularly women who are living with the most advanced stage of breast cancer – metastatic breast cancer (MBC). Unlike breast cancer which is detected early, MBC is, at present, an incurable condition with a median survival of 2-3 years. Significant research advances may change this but at the moment, these women live with, as opposed to ‘beat’, their breast cancer.

Our research with women with MBC has revealed that their stories and struggles often do not align with the public image and understanding of breast cancer. The pink ribbon culture can obscure the devastating reality that women living with MBC and their families deal with, on a daily basis. Inadvertently, the breast cancer movement may have put women into two camps: those who have successfully defeated breast cancer, and those who have somehow not fought hard enough.

“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here” NY Times, 2011

Understandably, many breast cancer patients may not wish to be confronted with the risk that their cancer may metastasize. Women with MBC represent the lack of hope that all women diagnosed with breast cancer face, and why would anybody want to focus their attention on this? But failing to include women with MBC in the public discourse on breast cancer has unfortunately meant that they can feel isolated and marginalised within the breast cancer community.

A number of publications from the MBC community have suggested that, not surprisingly, many women with MBC are angry and fed-up at the media’s failure to make MBC a public issue. However there is also a frustration at the lack of interest and investment from breast cancer organizations towards their unique experience and needs. This is also translated into research: less than five percent of total cancer research funding is spent on investigating metastases despite metastatic disease being the direct or indirect cause of approximately 90 percent of all cancer deaths.

Buying a pink ribbon is not enough for women with MBC. It does not reduce deaths caused by this cruel disease, nor does it help to fund the kind of research that is currently lacking –that aims provide to provide better quality and length of life for women with MBC.

We need to shift away from the message that awareness of breast cancer always leads to cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis, and 20% to 30% of people initially diagnosed with early stage disease will develop MBC. Whilst raising awareness of breast cancer is vital, it is unlikely that this battle will be truly won unless we pay attention, fully acknowledge, and embrace this forgotten group of women.