A Mediaplanet campaign focused on
Blood Health
02 Q2 2021 | A promotional supplement distributed on behalf of Mediaplanet, which takes sole responsibility for its content
“We all exercised extreme caution, at the expense of what we had previously considered humanity.” ~ Professor Adele Fielding President of the British Society for Haematology
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IN THIS ISSUE
To improve diagnosis, we need the right tools and infrastructure to support them.
Exercising extreme caution at the cost of human interaction
Dr Caroline Donoghue Senior Scientific Knowledge and Communications Officer, Myeloma UK Page 04
As COVID-19 almost overwhelmed the capacity of our NHS, people were reluctant to bring their health issues to medical attention. However, acute leukaemia rapidly becomes hard to ignore, so our service did not see any slowdown in activity.
The burden of sepsis and COVID-19. Dr Ron Daniels On behalf of the UK Sepsis Trust Page 04
Women’s bleeding disorders can have a big impact physically, psychologically and financially. Dr Kate Khair Vice-chair, The Haemophilia Society Page 06
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ardly anyone suspects they have acute leukaemia. Symptoms often include fatigue, breathlessness, fever, aching bones and lingering infections, so it’s easy to see why so many people diagnosed by University College London Hospital’s leukaemia service last year thought they probably had COVID-19. Indeed, some had both. Adapting in-patient treatments None of us had experience of protecting people from infection with a newly emerged virus during a global pandemic. Leukaemia had already suppressed our patients’ immune systems, but they needed immediate, intensive in-patient chemotherapy treatments, which would make them even more vulnerable to infection. At first, separating non-infected patients and staff from those with COVID-19 was not straightforward. There was limited capacity for COVID testing and the correct personal protective equipment for staff took time to define. The cosy rooms into which doctors and nurses crowded to write patient notes and take breaks were now terrifying. The cost of keeping people safe As reality dawned that many patients were going to die of COVID-19, it crossed our minds that we could be among them. Many of our team became infected. I am haunted that I could not hug my nurse friends when I met them, ashen-faced and tearful, outside the hospital after one of our departmental nursing colleagues, a mother of two young children, had just died of COVID. We all exercised extreme caution, at the expense of what we had previously considered humanity. The same limitations on personal contact were imposed on our patients. Once admitted, they were not allowed out of their single rooms and could not receive visitors—this felt like a cruel and unusual additional punishment to a
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diagnosis of leukaemia. Ward rounds incorporated frantic loved ones electronically, wherever possible, but FaceTimes and empathy were muted by masks and visors.
Ward rounds incorporated frantic loved ones electronically, wherever possible, but FaceTimes and empathy were muted by masks and visors. Remaining vigilant One year on, my hospital has offered vaccinations to all staff, who are also regularly COVID-tested. Our vulnerable patients with leukaemia have been vaccinated too, but many will not get adequate protection because of their condition or treatment. They can now get a visitor once per week, but mostly they are dependent on the staff for comfort and support when they are afraid. Most of what we do to help people still feels much less human than it was. I imagine it’s no surprise to readers that I remain the person in the supermarket queue reminding you to pull your mask over your nose.
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WRITTEN BY
Professor Adele Fielding President, British Society for Haematology
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The value of shared decision-making Patients with blood cancers need more involvement in treatment decision-making, according to industry expert.
S INTERVIEW WITH Dr Toby Kent, PHD MPH Head Of Medical Affairs (Oncology), Abbvie UK WRITTEN BY Mark Nicholls
AbbVie has contributed to and funded this content. UK-ONCC-210034 June 2021
hared decision-making between healthcare professionals and patients is key to the NHS Long Term Plan and achieving better outcomes for people with long term conditions. In chronic lymphocytic leukaemia (CLL), a type of blood cancer where patients can have different experiences and care needs, advances in therapy offer increasing treatment choices. However, research shows that only 49% of people with CLL fully understand their condition and just 33% report being offered a choice of treatments. Due to its impact on the immune system, COVID-19 has also added complexity to CLL care, while reducing opportunities for patient involvement. Personalised care Dr Toby Kent, Head of Medical Affairs (Oncology) at AbbVie UK emphasises the growing importance of personalised care. “One size fits all approaches in a health and care system, simply cannot meet the increasing complexity and expectation of people’s needs,” he says. “The shared decision-making approach is really important – it is a process in which individuals and healthcare professionals work together to understand and decide on an appropriate option based on an individual’s circumstances and preferences. “Evidence shows that when people are engaged in their
own care in this way, they have better health outcomes and a better experience of care.” Treatment plans Shared decision-making can also result in treatment plans that better reflect patients’ goals. This discussion with clinicians can include treatment type and duration, side effects, tests, access to support and where patients have treatment as well as, what living better with CLL means to them. “All these can influence an appropriate treatment choice,” says Dr Kent. Specifically, with CLL, he says areas to highlight are: the importance of patients having timely access to good information and signposting to patient groups; care plans setting out holistic needs and long-term goals in a patient’s cancer care; open and honest communication between healthcare professional, and patients, their families and caregivers. Not everyone with long term conditions like CLL can or want to be an expert in their disease. For those that do, it requires industry, healthcare professionals, patient groups, policy makers and health bodies all playing a role. In their report Empowering Conversations: Making shared decision making a reality for patients in an evolving NHS, AbbVie outlines recommendations on how this can be taken forward.
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Most GPs will only see one or two cases of myeloma throughout their career and it is naïve to expect every GP to remember every sign, symptom and test for myeloma. To improve diagnosis, we need the right tools and infrastructure to support them. -Dr Caroline Donoghue Senior Scientific Knowledge and Communications Officer, Myeloma UK
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Diagnosing myeloma starts with a suspicion Myeloma patients experience some of the longest delays to diagnosis of all cancer patients, with a third of patients being diagnosed via an emergency route.
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yeloma is an incurable blood cancer which, as it advances, becomes more difficult to treat and more likely to cause life-limiting complications. An early diagnosis of myeloma means patients are treated sooner to help prevent permanent damage, lengthen survival and preserve quality of life. There is no single symptom Myeloma arises from plasma cells found in the bone marrow. As it grows, it spreads throughout the bone marrow, weakening the bones, reducing blood cell production and suppresses the immune system. As a result, the signs and symptoms of myeloma - such as bone pain, fatigue, anaemia, kidney damage and recurring infections - are vague and outwardly unconnected. With no lump, no single place to screen or scan and no single symptom to raise concern mean myeloma is consistently difficult to detect. Sometimes we need to suspect the worst The challenge is not that it is a rare cancer, but that the most frequent symptoms are common and often linked to general ageing or benign conditions. Consequently, one of the main challenges to diagnosis is for patients and GPs to suspect that these seemingly ordinary symptoms could be something more serious. Other early signs of myeloma can go undetected because they are happening under the surface. For example, changes in the blood: the presence of paraprotein, the increases in blood calcium levels and blood thickness and the reduction in blood cells.
WRITTEN BY Dr Caroline Donoghue Senior Scientific Knowledge and Communications Officer, Myeloma UK
Making diagnosis as simple as possible Without screening methods or an identifiable symptom, diagnosis relies on someone piecing everything together. Most GPs will only see one or two cases of myeloma throughout their career and it is naïve to expect every GP to remember every sign, symptom and test for myeloma. To improve diagnosis, we need the right tools and infrastructure to support them.
The burden of sepsis and COVID-19 With the world’s attention on infectious illness, we highlight the plight of those affected by sepsis every year around the world and call for support for survivors.
WRITTEN BY Dr Ron Daniels on behalf of the UK Sepsis Trust
With no lump, no single place to screen or scan and no single symptom to raise concern mean myeloma is consistently difficult to detect. Rapid diagnostic centres are helping. Having one referral route for patients with vague but worrying symptoms reduces the risk of delay caused by incorrect referrals. Tools like the Myeloma GP Diagnostic Tool, developed by the Myeloma UK Early Diagnosis Programme, also help by providing simple guidance and instructions to suspect and diagnose myeloma. Without challenging current practice around early diagnosis, we cannot achieve the change in patient outcomes that we wish to see.
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epsis is a life-threatening condition arising when the body’s response to an infection causes organ damage. It can be triggered by any infection, most commonly bacteria but also by viruses including SARS-CoV-2. The World Health Organization acknowledges that patients who are critically ill with severe COVID-19 and other infectious diseases are at higher risk of developing and dying from sepsis. Within the UK, sepsis is estimated to affect 245,000 people each year claiming 48,500 lives. Around the world, the Institute for Health Metrics and Evaluation estimate that 49 million people are affected each year accounting for 11 million lives lost. This means that, globally, an estimated 38 million people survive sepsis each year, just under 200,000 of those are based in the UK. As strategies to recognise and manage sepsis steadily improve, so too will the number of survivors. The burden of survival For approximately 40% of sepsis survivors, ongoing physical, cognitive and psychological challenges are in evidence at one year after their illness. For example, 22% suffer PTSD. This is described in the medical literature as ‘Post-Sepsis Syndrome’ (PSS). In 2016, the York Health Economics Consortium estimated the cost of sepsis to the NHS to be £2.8 billion annually, with the cost of lost productivity consequently to the wider economy as high as £15.6 billion. Evidence is strong that providing targeted rehabilitation to these patients speeds their recovery and return to productivity, with clear human and societal benefit.
Within the UK, sepsis is estimated to affect 245,000 people each year claiming 48,500 lives. The need for action Similarly, the plight of those surviving COVID-19 has been highlighted by the patient-coined term ‘long COVID’. Long COVID is likely to share many of the characteristics of PSS, perhaps with the added or more prevalent insults of lung scarring and heart muscle damage. As we pass the one year mark following the initial illness of many, it is becoming clear that, just like with PSS, whilst many patients have fortunately recovered the same is not true for all. Patient and advocacy organisations like the UK Sepsis Trust have welcomed the NHS’ commitment to the Your COVID Recovery programme, though this is not yet available to all. Many Intensive Care Units offer follow-up to the most severely sick, though few offer rehabilitation. Access to supported rehabilitation should be available for all who survive sepsis and severe infection irrespective of the cause.
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How inequalities are hitting blood cancer care
careful that these changes don’t create a digital divide in patient care.
Tackling healthcare inequalities sits at the core of helping to beat blood cancer for everybody.
T INTERVIEW WITH Helen Rowntree Director of Research, Services and Engagement, Blood Cancer UK WRITTEN BY Mark Nicholls
The treatment of blood cancer, and the care of those who have it, can vary. It is a condition affected by healthcare inequalities. Ethnicity, health literacy and gender are factors, but at Blood Cancer UK, our mission is to beat blood cancer for everybody within a generation. While that goal is achievable, we know it can only be met if we tackle those inequalities, which are also visible around research and access to clinical trials. We know that some patient groups are better represented than others, but we have to address this to ensure the research we support truly reflects the needs of the broader population. Mental health COVID-19 has had a wide-reaching impact. Blood cancer patients are
particularly affected as their condition places them at high risk from COVID-19 and vaccines are less likely to be effective. Many are still shielding, which has created ongoing anxiety. In over 6,400 responses to our survey of blood cancer patients and carers last year, 87% said their mental health had been affected by the pandemic. As a result, we are carrying out work around access to mental health support. COVID has presented some opportunities to change the way care is delivered to benefit some patients, for example catalysing a shift to digital healthcare. However, blood cancer can impact people of all ages and demographics and not everyone has access to the necessary technology, or is comfortable engaging in health services through it. Moving forwards, we need to be
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Trial support We hope lessons learned from COVID-19 research will lead to changes in the post-COVID clinical trial environment, with greater patient centricity, more mechanisms to get patients into trials and better support once they are enrolled in them. Last year, as COVID hit, we launched our nurse-led clinical trial support service to help participants better understand trials and processes, what they are consenting to and possible side effects. A key learning point has been the importance of building inclusion into new services from the outset, rather than adapting them later. Time to act Improving the quality of information available about blood cancer is invaluable in raising awareness in the broader population, patients and healthcare professionals. But above all, we know we must act now to address those health inequalities to achieve our overarching mission. We remain acutely aware that the only way we will beat blood cancer for everybody is by acknowledging the inequalities that currently exist in blood cancer care, treatment and outcomes, and working to address them.
Find out more at bloodcancer.org.uk
This content has been initiated, funded and reviewed by Kite, a Gilead company Document number: UK-UNB-0304 Date of preparation: June 2021
Last year, 10,000 Black donors gave 10 minutes of their time to donate life-saving blood. Every month, NHS Blood and Transplant need over 1,300 new Black donors to provide not only essential treatment for the 14,000 patients living with sickle cell disease, but also provide life-saving blood for use in emergencies, childbirth, during surgery, treatment of cancer and for a range of medical conditions. -Orin Lewis OBE, Co-founder, ACLT (African Caribbean Leukaemia Trust)
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Coalition to raise awareness of blood disorders and blood donation
Lack of awareness of women’s bleeding disorders is delaying diagnosis
A new campaign encourages the Black community to book a blood donation appointment at one of the eight sessions taking place across the country.
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lack people aged 17-66 are being encouraged to register to donate blood under a new blood donation campaign in memory of Evan Nathan Smith; a 21-year-old Black man who suffered a sickle cell crisis in hospital, but later died due to medical staff failing to provide him with a blood transfusion. A recent coroner’s inquest concluded, had Evan, who worked as a Sports Analyst, received the blood transfusion he had requested, his life may have been saved. Increasing blood donors Last year, 10,000 Black donors gave 10 minutes of their time to donate life-saving blood. Every month, NHS Blood and Transplant need over 1,300 new Black donors to provide not only essential treatment for the 14,000 patients living with sickle cell disease, but also provide life-saving blood for use in emergencies, childbirth, during surgery, treatment of cancer and for a range of medical conditions. Whilst people from the same ethnic background are more likely to have the same blood type, the shortage of Black donors makes it harder to find the best ethnically matched blood for Black patients. The campaign, ‘United by Blood: Donating in memory of Evan Nathan Smith’ is supported by NHS Blood and Transplant. It was created by ‘United by Blood’, a coalition of Black organisations working together to raise awareness of blood disorders and blood donation. The three organisations include: ACLT (African Caribbean Leukaemia Trust), Black Mums Upfront and CellFeForLife.
Women’s bleeding disorders can have a big impact physically, psychologically and financially, yet many people still don’t know that women can be affected by these genetic conditions.
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ore women than men have a diagnosed genetic bleeding disorder – the most common for women are von Willebrand disease, mild haemophilia or factor XI deficiency. Yet a lack of awareness can result in long delays in diagnosis and poor care. Knowing the symptoms There are 17,000 women and girls in the UK living with a diagnosed genetic bleeding disorder and at least another 35,000 undiagnosed. Research shows that heavy menstrual bleeding (HMB) is the most common clinical indicator of a genetic bleeding disorder. One in six women with HMB has an underlying bleeding disorder and 20% of adolescent girls who seek medical help with HMB will have a bleeding disorder. Other signs are a tendency to bruise very easily, prolonged bleeding after dental work, frequent nosebleeds and a family history of a bleeding disorder.
Book your session today: To register to donate blood and attend the United by Blood: Donating in memory of Evan Nathan Smith on Saturday 19th June (World Sickle Cell Day) and Sunday 20th June (Father’s Day), individuals should call the priority booking line on 0300 303 2737
There are 17,000 women and girls in the UK living with a diagnosed genetic bleeding disorder and at least another 35,000 undiagnosed.
increase diagnoses. In just a few minutes on their phone or computer, the new tool will take the user through questions about their periods, other bleeding symptoms and family history and will give guidance on whether they should go to their GP and ask to be tested for a bleeding disorder. Crucially, we recommend that women ask their GP for a referral to their local haemophilia centre so that specialist tests can be done. Basic blood clotting tests done by GPs often will not pick up a bleeding disorder.
Dr Jo Traunter was diagnosed with type 2 von Willebrand disease at the age of 36, just before the birth of her third child. The pregnancy had complications which, combined with her bleeding disorder, created a potentially lifethreatening situation. Jo says: “Diagnosis literally saved my life, and I will not be alone. How many women have suffered unnecessary severe bleeding or risk to life because of a lack of diagnosis? I hope the new symptom checker tool empowers more women to get the specialist testing they need so they can potentially get a diagnosis and move forward with their lives.”
WRITTEN BY
Orin Lewis OBE Co-founder, ACLT (African Caribbean Leukaemia Trust)
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Improving diagnosis of bleeding disorders The Haemophilia Society’s Talking Red campaign, which raises awareness about women’s bleeding disorders, has launched a symptom checker aimed at women and girls with HMB which could dramatically
WRITTEN BY Dr Kate Khair Vice-chair, The Haemophilia Society
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Around the world, the Institute for Health Metrics and Evaluation estimate that 49 million people are affected each year accounting for 11 million lives lost. This means that, globally, an estimated 38 million people survive sepsis each year, just under 200,000 of those are based in the UK. As strategies to recognise and manage sepsis steadily improve, so too will the number of survivors. - Dr Ron Daniels, on behalf of the UK Sepsis Trust
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Hardly anyone suspects they have acute leukaemia. Symptoms often include fatigue, breathlessness, fever, aching bones and lingering infections, so it’s easy to see why so many people diagnosed by University College London Hospital’s leukaemia service last year thought they probably had COVID-19. -Professor Adele Fielding, President, British Society for Haematology
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