Caring for the carers

  • Unpaid carers often get little support or recognition for the work they do, but their role is essential to improving patient outcomes.
  • Unpaid carers often have high levels of stress and financial pressures as a result of the struggle to balance the needs of the patient in their care with their own demands.
  • Without unpaid carers, health and care systems are unsustainable, yet carers are rarely mentioned in debates about long-term sustainability.

Unpaid carers perform a pivotal role in patient support, with the estimated value of unpaid care in the UK alone standing at £132 billion. But these unsung heroes are seldom recognised for their efforts and their own health and welfare suffer too. Here Scott Williams, vice president, head of Global Patient Advocacy and Strategic Partnerships at Merck, and Madeleine Starr, director of Business Development & Innovation at Carers UK, highlight a new initiative that aims to redress the balance for carers globally.

patient doctor discussion

In recent years there has been a much greater focus on patient-directed care, where treatment and care take into account an individual’s needs and personal preferences. However, while this progress has been positive for patients, there are aspects of care that can be overlooked, such as the contribution of a friend or family member who supports patients, both within and outside the clinical setting.

Carers often get little support or recognition for the work they do, but their role is essential to improving patient outcomes, as they are often involved in decisions about an individual’s health and care plan, as well as helping to manage the patient’s finances, living arrangements and day-to-day activities, such as shopping, bathing, cleaning and emotional support.

Carers are not limited by culture or country; they share common traits and face common challenges.

These unpaid carers provide care for those who need it most, often putting their own lives on hold or altering their daily routines to ensure that an ill or disabled loved one or friend has the support they need. However, the important role that carers play often goes unrecognised and they receive inconsistent support from healthcare systems around the world.

Values-driven
carer initiative

To meet the need for better support and raise awareness of the pivotal role that carers provide to patients, Merck has collaborated with leading carer organisations around the world to launch Embracing Carers, an initiative focused on improving carers’ health and wellness, as well as providing recognition and support for them within healthcare systems around the globe.

carer with patient

“Our ongoing commitment to focusing on caring for the family and loved ones is firmly rooted in our long history and part of our DNA,”

says Scott Williams, head of Global Patient Advocacy and Strategic Partnerships at Merck.

“We are at the beginning of a journey to respond to the unique and unmet needs of carers globally. Working with carer thought leaders, we aim to elevate caregiving as a global public health priority,” adds Williams.

Carers often have high levels of stress and financial pressures as a result of the struggle to balance the needs of the patient in their care with their own demands, such as employment and requirements for information, education and support networks.

Global carer
challenges

The challenges faced by carers have been highlighted in the company’s recent Embracing Carers international survey that questioned over 3,500 unpaid carers across seven countries (Australia, France, Germany, Italy, Spain, United Kingdom and United States). It revealed that 55% of unpaid carers felt that their physical health had suffered as a result of their carer duties, and 54% of unpaid carers often didn’t have time to book or attend medical appointments for themselves.

“It is clear that many carers are neglecting their own health and wellbeing as a direct result of their caring duties. Few, if any, services or programmes exist today to help carers with this balance, hence, Merck’s conviction and commitment to champion carer support and become a longstanding partner for the carer,” Williams explains.

As its first steps, Embracing Carers has undertaken to:

1. Support the carer infrastructure by making possible the International Alliance of Carer Organisations’ (IACO) Carer Toolkit, providing countries without a carer infrastructure the information to develop a national carer organisation.

2. Convene carer organisations from across the world to serve as strategic advisers in increasing support and recognition of carers.

3. Develop calls to action to broaden stakeholder engagement, increase global awareness of challenges, drive legislative action and engage with healthcare systems.

Embracing Carers is advised and supported by leading international carer organisations, ensuring that the aims of the initiative are correctly directed to benefit the health and wellness of carers around the world.

Madeleine Starr, director of Business Development & Innovation at Carers UK, welcomes the launch of Embracing Carers, and says: “In the UK alone, the estimated value of unpaid care is £132 billion – that is the cost of a second National Health Service. If you strip that out, our health and care systems are unsustainable, yet carers are very rarely mentioned in debates around long-term sustainability.

“Pressures on health and care mean that families are increasingly required to do more, even though the bulk of care is already provided by family and friends. However, modern living, with families no longer living in the same town, region, or even country, and the need to combine work with care, mean that many people care at a distance and spend hours travelling at weekends, often having to take time off to take parents to hospital appointments or manage care arrangements.

“Modern communications and technology does help, but this doesn’t stop the worry and additional pressure to ensure the care of a loved one. These challenges are significant and juggling work, home and caring commitments does take its toll on individuals.”

Thinking out of the box

Starr points out: “Embracing Carers is not specific to a disease or condition, and Merck has taken a much broader approach in looking at common global issues.”

“They are thinking both beyond the patient-centric approach and beyond their direct commercial interest, and that can only be a good thing. We are very interested to see where this goes next,” she concludes.

Find out more about Embracing Carers via the website: www.embracingcarers.com

About the Authors

Scott Williams is Vice President, Head of Global Patient Advocacy and Strategic Partnerships at Merck.

Prior to this role, he was managing director, Strategic Partnerships at the American Cancer Society Cancer Action Network (ACS CAN), senior vice president at Men’s Health Network (MHN), public relations manager for Sanofi Pasteur in Swiftwater, PA, and Senior Analyst of Strategic Services at PharmaStrat, Inc.

He received his BA in Political Science with Honours and a minor in Business Management from Moravian College in Bethlehem, PA. Scott also has a Master’s in Public Administration (MPA) from American University in Washington, DC.

He has been featured as an expert in numerous publications and has been a peer reviewer and contributing author to the American Journal of Men’s Health. He also founded the Men’s Health Caucus within the American Public Health Association.

Madeleine Starr MBE is director of Business Development and Innovation at Carers UK, a not-for-profit organisation with nearly 50 years experience of working to improve the lives of unpaid carers, through campaigning and lobbying at local, national and international level and providing information, advocacy, training and consultancy services.

Madeleine joined Carers UK in 2000 to lead its work on carers and employment.

In 2009 she was recognised as a Working Families Pioneer for ‘her sustained and successful campaigning for carers’ employment rights’ and for her influence in establishing the Employers for Carers membership forum.

She is currently leading Carers UK’s work on digital innovation in health, care and the third sector, and new mechanisms for growing the care market.

Madeleine was awarded an MBE in 2012 for services to employment.

 

Don’t miss your complimentary subscription to Deep Dive and our newsletter

Sign up


Share

Video
Share

Your name

Your e-mail

Name receiver

E-mail address receiver

Your message

Send

Share

E-mail

Facebook

Twitter

Google+

LinkedIn

Contact

Your name

Your e-mail

Your message

Send