Invisible Work of Non-Professional Carers
You may know it’s going to happen, you may not, you may be in denial it is happening, you may be in the thick of it. You may not be aware of how much of your time, energy, health (mental and physical), relationships, and finances will be or are affected, or maybe you do. Maybe you have some personal rewards, maybe not. Being a carer is to commit to looking after someone else whatever it takes, with uncertainty, often without support, and at a personal cost.
Understanding the carer’s world is as complex as the complexity of patients’. Voluntary carers are family members and friends from all kinds of backgrounds, ages, abilities, health, and resources, looking after loved ones in greater need. Both male and female carers, who look after the sick, elderly and disabled, had a suicide risk that was triple the national average (Financial Times 17 May 2017).
The contribution of 6.5 million carers in UK, (1.4 million do more than 50 hours of care a week), is estimated to be valued at £132 billion whilst the value of health spending is £134 billion (Carers UK, State of Caring 2017). The approximate number of employees in NHS and Local Government Health and Social Services are 1.6 million and 270 thousand respectively. Since the current records began NHS numbers are at their highest level whilst the Local Government figures are at their lowest (Office of National Statistics Sept 2017).
As well as the trend in reducing staff numbers and care services in Local Government, there are significant organisational cultures and accountability differences for social care, medical care, and public health that hinder integrating services to improve patient centred and carer outcomes. Research can help understand these complexities and differences. But what are the research questions relevant to understanding carers to help develop better services that support carers, patients and professionals across the health and social care system, giving more sustainable outcomes for all? Carers can contribute to this research with their knowledge, experience and expertise.
(The Primary Care Conference in Plymouth in November 2017 was for clinicians, health and social care professionals, research academics, patients and carers to share their knowledge and insights.)
Invisible work of a non-professional carer
My name is Alex Aylward and I joined the PenARC Public Involvement Group (PenPIG) through my Lay Member role in Northern Eastern and Western Devon CCG. I have been a patient representative and lay member in the NHS in Devon covering various roles for last 13 years.
I have a good understanding of the local health and care system and believe in patients as expert users of services, and that they can contribute to service improvements. Hence, my interest in research as being fundamental to clinical care pathway development, and service design and implementation. I have been a lifelong user of NHS services with my main interests in sensory impairment, cardiovascular disease, caring, and mental health.
Projects involved in: Patients at the Centre, supporting researchers with their patient involvement and lay summaries for project funding applications.