In Search Of Healthcare’s Invisible Army, The Caregivers’ Story

In our latest white paper campaign, we look at the tremendous impact that carers have on the lives of patients, and their value to all stakeholders in healthcare. Through in-depth interviews with carers from around the world, frontline support workers, and leading experts, and with the support of comprehensive secondary research, our campaign hopes to offer a picture of what life is like for carers and how we can better support them. 

“We as the healthcare professionals, we hardly spend time with patients. We provide, our skills, our knowledge, and our training. But it is the caregivers that are implementing that knowledge and then we are seeing the changes.” 
Anil Patil, Founder & Executive Director, Carers Worldwide

Carers: the family, friends, and neighbours that are by the side of patients day after day, hour after hour, ensuring their wellbeing. Many simply wouldn’t be able to cope without the selfless care these people provide, and their efforts are felt throughout the industry.

To healthcare systems, carers are the unpaid army keeping everything going. The value of care provided by unpaid caregivers in the UK is almost equivalent to the total of public health spending (£132 billion, and £134 billion respectively).

To pharmaceutical companies, carers are the potential catalysts to therapy success. Studies with COPD and Chronic Kidney Disease patients indicate that carers can have a positive influence on patient adherence to medication and healthy behaviours and thus drive positive outcomes in the process.

To healthcare professionals, carers are the experts-by-experience turning treatment plans into reality. In the time they spend alongside patients they can gain experience and knowledge that makes them an invaluable ally to healthcare professionals. As Emily Holzhausen OBE, Director of Policy and Public Affairs at Carers UK, told us, “Carers are a huge source of evidence [to healthcare professionals]…with very rare conditions, sometimes the carer is the person that knows more than the professional sitting in front of them.”

In spite of their obvious value to all in healthcare, carers efforts are often overlooked and unsupported; in our discussions with carers, support workers and experts the word “invisible” came up time and time again.

"Carers are invisible. They are hidden behind the curtain. They’re among us, but we don’t have eyes to see them."
Anil Patil, Founder & Executive Director, Carers Worldwide.

To better understand the needs of carers and gain an insight into just how significant a role they play in the world of healthcare, we conducted in-depth interviews with ten carers from around the world (England, Scotland, Italy, Netherlands, Kenya, and India). Carers spend a lot of their time focussed on the needs of other people, but we wanted them to talk to us about their own needs. As such, we used Maslow’s hierarchy of human needs to shape our discussions with the carers we spoke to.

These conversations were supported by consultations with frontline support workers and further interviews with leading figures from the caring community, including:

  • Emily Holzhausen OBE, Director of Policy & Public Affairs, Carers UK
  • Gail Scott-Spicer, CEO, Carers Trust, @gailscottspicer
  • Beth Britton, renowned campaigner, consultant, and writer, @bethyb1886
  • Anil Patil, Founder & Executive Director, Carers Worldwide

With support from comprehensive secondary research, we invite you to consider our findings, and join us as we look to better support carers.

Over the coming months we’ll be releasing a series of blogs, YouTube films, and podcasts, featuring interviews with the experts and carers we spoke to, and excerpts from our findings. Please also join the conversation with #Caring4Carers.

References
Cicolini G et al. (2012) Influence of family carers on haemodialyzed patients’ adherence to dietary and fluid restrictions: an observational study. J Adv Nurs. 68: 2410-7

Epstein-Lubow G et al. (2014) Caregiver presence and patient completion of a transitional care intervention. J Manag Care. 20: e349-444

Trivedi RB et al. (2012) The influence of informal caregivers on adherence in COPD patients. Ann Behav Med. 44: 66-72