Carers: The Forgotten Heroes of Healthcare
A new campaign to raise awareness of the needs of care-givers is paving the way for pharma to not just go beyond the pill but also beyond the patient
In healthcare nowadays, we talk a lot about the patient journey – the entirety of a person's experience from first symptom to final treatment. Yet, it is easy to forget that the patient is rarely alone on this life trek.
'Informal' carers are the forgotten heroes of every patient story – forgotten, most of all perhaps, by pharma. Until recently, caregivers have been relegated to the background; after all, it's the patient that takes a medicine, isn't it?
The truth is that carers walk alongside the people they care for throughout the entire journey. They drive patients to appointments then sit with them in the waiting room. They help patients to decipher medical information and medication schedules, and remind them to take their meds. They’re there for the highs and the lows, supporting their loved ones’ emotional journeys from start to finish.
However, unpaid caregivers are not only a vital part of patient care and wellbeing, they also play a vital role in deciding on that care. They don’t stay in the waiting room, they contribute to discussions about care choices before, during and after consultations with clinicians, plus they actively seek information for their charges (61% of health information seekers online are ‘surrogate seekers’).
A passion project
The importance of informal carers has been highlighted recently in an international campaign – Embracing Carers – run by Merck (EMD Serono in the US) and advised by eight leading caregiver organizations, including the Caregiver Action Network, Carers Worldwide, Eurocarers, and the International Alliance of Carer Organizations (IACO).
“We’re starting a global movement to recognize the pivotal role of carers,” says one of the driving forces behind the campaign, Scott Williams, VP, Head of Global Patient Advocacy and Strategic Partnerships at Merck/EMD Serono. “What we’ve heard from the eight carer organizations we’re working with globally is that that’s there hasn’t been a common thread to not just recognize the role that carers play for patients but to focus on carers’ needs as well.”
A key element of the campaign is to highlight the emotional, financial and health implications of being an unpaid caregiver. A survey conducted across seven countries (Australia, France, Germany, Italy, Spain, United Kingdom, United States) reported that 42% of carers say they put the health of the person they are caring for above their own, while more than half reported their physical health had suffered.
“Almost half of the time, carers don’t have the time or the ability to make medical appointments for themselves, so, as a part of their caring, they’re giving up taking care of themselves,” says Williams.
Embracing Carers aims to combat this in four key ways: to support and bolster carer infrastructure; to convene carer organizations across the world; to commit to supporting Merck employees with caring responsibilities; and to develop calls to action to broaden stakeholder engagement, increase global awareness and engage with healthcare systems.
The campaign is part of Merck’s commitment to meeting the unmet needs of patients but for Williams, the motivation is also personal. “For me, my journey began as a teenager as my father cared for me when I suffered from a debilitating condition. Now, the tables have turned and I am a long-distance carer for my Mom, who suffers with multiple chronic conditions. So, I have seen caring from both sides and so this campaign is something of a unique personal passion.”
Going beyond the patient
A greater focus on the work and needs of carers is desperately needed, says Madeleine Starr, Director of Business Development & Innovation at Carers UK, which is an advisor to Embracing Carers. “In the UK alone, the estimated value of unpaid care is £132bn – that is the cost of a second National Health Service. If you strip that out, it is unsustainable, yet carers are very rarely mentioned in debates around long-term sustainability.”
80% of care is provided – and paid for – by families, she adds. “Families provide the lion’s share of all care, yet even in the UK where the infrastructure is quite good, we still have government ministers occasionally saying that families need to look after their old folk. This is complete nonsense – families may not care for their loved in the traditional ways as they rarely now live in the same house or even in the same town or city. But family members are still caring; they are up and down motorways at weekends, supporting care packages, taking time off work to take parents to hospital appointments. They are also fretting and worrying, and using technology to find more support. There are significant pressures – carers are juggling these responsibilities with work and their own lives, and it takes its toll.”
Starr also welcomes the increased focus on care-givers from pharma companies like Merck. “Merck initially approached IACO and got a number of us together to talk about what it could do as an organization. Merck is not the only pharmaceutical company that has turned its attention to carers – for example, IACO works with Novartis and AbbVie, and there are other players too – but this really is the first initiative that said ‘Let’s focus on carers’ and then went for it. I can’t believe they have done so much so quickly.”
Crucial elements were the support of Merck senior leadership and a healthy dose of passion, she says. “This has been very much driven by Scott Williams who, of course, has a very interesting story and is a very inspiring young man. In recent years, pharma has had this focus on beyond-the-pill and the patient, but in our conversations with them we actively say that you need to go beyond the patient, as patients are very rarely in a vacuum and there are often many people supporting them.”
Charities have sometimes been wary of pharma companies – but this could change, says Starr. “Pharma has not always had a good reputation and charities have been cautious about working with them, in particular where any work has been commercially targeted around a particular product. Importantly, Embracing Carers is not specific to a disease or condition, which is quite unusual. We’ve worked with Novartis recently on a study in heart failure and we’ve been looking at people with Parkinson’s with AbbVie, but Merck has gone wider and looked at common global issues.”
The campaign is a clever move for Merck, says Starr, although she does not doubt the company’s motives. “Merck is very sincere, that’s for sure. They are looking at pharma having a role beyond their direct commercial interest, and that cannot be a bad thing. It will be very interesting to see what follows from other pharmas, especially to see if there is an appetite from pharma companies to come together to work in a collaborative way. It will be very interesting to see where this goes next.”
For more information on Embracing Carers, the International Survey or Carers Report, visit the website www.embracingcarers.com.