Setting the scene

How do you keep residents safe whilst upholding their human rights to private and family life, as enshrined in the Human Rights Act 1998? Three years on from the most severe visiting restrictions of the pandemic, these questions remain for many care providers, residents and their families. COVID-19 may no longer be classed as a ‘global health emergency’, but localised outbreaks of flu or norovirus can still mean that temporary restrictions need to be put in place. Care home managers face the dilemma of balancing infection control and safety with ensuring that residents can maintain contact with friends, family, and the wider community.

The benefits of social connection and support for our health have been well reported by researchers. But for some people, the support provided by a friend or family member is more than just beneficial – it is essential to their care. Unpaid carers can provide practical and emotional support to their loved ones that complements the care provided by staff. For people living with dementia, the support of a loved one after admission to hospital or a care home can provide reassurance as they adjust to an unfamiliar setting. This has led over 1,500 hospitals and care homes to participate in John’s Campaign as a pledge to welcome and include unpaid carers.

What is the ‘right to a care supporter’?

You might not have heard of a ‘care supporter’ before, but there are many parallels with the unpaid carers we’ve just described. A care supporter provides essential support to someone drawing on health or social care and can be anyone who is important to the person. The word ‘essential’ helps to distinguish the care supporter role from that of a visitor. Whilst both are beneficial, one is clearly needed to support the person’s health and wellbeing. Someone might need a care supporter because they have dementia or a learning disability, or because they now need additional support following a traumatic event like a road traffic accident. The care supporter might not identify as a carer, even if the support they provide is very similar.

The Gloria’s Law campaign led by Care Rights UK and John’s Campaign is calling for a new right to a care supporter to be enshrined in UK Law. To do this, they are working with MPs from multiple political parties to introduce the Care Supporter Bill in the Houses of Parliament. This new law would give anyone drawing on health or social care the right to receive “unrestricted, in person support from at least one essential Care Supporter” (Care Rights UK). This right would travel with the person across health and care settings and be enforced by the regulator.

What do we want to research?

We want to understand how the right to a care supporter might work in practice, with a specific focus on people living with dementia. We’ll be interviewing both health and social care staff as well as people living with dementia and their carers. We want to reflect on the ‘Essential Caregiver Role’ that was introduced during the pandemic and find out how easy or difficult it was to implement. By gaining these different perspectives, we hope to produce some useful insights about the practicalities of this new right.

The second part of our study involves co-producing some resources to help people understand the right to a care supporter and nominate one if they would like to. Co-production means that we will work alongside care home residents, older adults and their families to find out what information would be most useful for them. We will work collaboratively with a design agency to produce an infographic and a short animation that can be shared widely across health and social care settings.

How can you find out more?

There are three ways to learn more about research over the next few months:

1. Visit us at Care Show Birmingham on Thursday, 12^th October. Our session will be in the People, Workforce and Wellbeing Theatre from 13:25 – 13:55.

2. Join our free half-day conference showcasing our research on Friday, 1^st December. It will be a hybrid event with the option to attend online or in person at King’s College London. We will share our progress with creating the resources and host external speakers working in health and social care. You can sign up via EventBrite.
3. Join the Human Rights and Social Care Forum mailing list to receive regular updates about our research, resources and events.

If you have any questions about our research or would like to find out more, you can also contact us directly via email (Joanna.2.brown@kcl.ac.uk). We look forward to hearing from you.

Jo Brown is a researcher working at King’s College London with Dr Caroline Emmer de Albuquerque Green. She specialises in qualitative research and is interested in mental health, dementia, and the role of unpaid carers.