Unpaid carers in Essex often feel isolated and powerless, Healthwatch Essex study finds

Our study of the experiences of unpaid carers in Essex has found that carers often do not get the support they need from health and care services in order to help them care for their loved ones.

The study found that formal support offered by health and care providers (including assessments and the provision of information) can be confusing, bureaucratic, and hard to access, often leaving carers feeling isolated and uncared for.

Young carers told us they feel that it’s harder for them to socialise, complete school work, and find quiet and calm places in the home, in comparison to their friends. All carers expressed a wish that they be listened to so that their needs can be understood and provided for.

What came across strongly was the carer’s knowledge and expertise about the condition and needs of the person being cared for. Carers expressed the need for health and care professionals to recognise this and to view the carer and the person being cared for as ‘partners in care’.

When asked what kind of support they need, carers reported that they appreciated personalised support from professionals, family, and friends. What’s helpful for some carers may not be right for others – so it’s vital that professionals take time to understand and meet the needs of each carer with personalised support.

For example, while carer support groups can be helpful for some, Debbie, who cares for her mum, told us, “I’m not one to join support groups because talking about the caring role is very upsetting…so I tend not to go there, I just get on with it.

“The care I need is someone to give me a break from the 24/7 so that I can just have a rest, because even if I’m sitting here (at home) I’m not resting, because Mum’s here. So to be able to have a relaxing time, when I’m not thinking in the back of my mind all the time ‘Is Mum safe? What’s she doing?’…to allow me to do something different for just a short space of time, to recharge my batteries. I crave time with my husband…which I don’t get.”

We asked the carers to keep audio diaries – completing a ten minute update every day for two weeks about what their day of caring had been like. This was then followed by a one-to-one interview, some of which were filmed.

These research methods helped to capture the deep emotional impact of caring, given that caring is often undertaken and continued because of a commitment to a pre-existing relationship like a marriage or sibling bond.

If you’re a carer and would like to give your feedback about the report, or contribute to our new project about the impact of the Care Act 2014, please email Healthwatch Essex at [email protected] or call 01376 572829.