Opinions

The way we engage with informal carers must change

Written by: James Townsend, CEO, Mobilise

Published: 04/12/2019

James shares how technology can help make carer assessments work better for UK carers.

Today, like every other day, there will be 6,000 people across the UK who start looking after somebody they love as an informal carer for the first time. Whether they have anticipated this role for many years, or whether it has been sprung on them unexpectedly by an emergency, most of those 6,000 now face a lonely journey. They may spend years learning for themselves through painful mistakes how to care for the person they love – how to navigate the complexities of the health and social care system; how to cope with the emotional stress; how to manage the practical and logistical impact on the family.

But the truth is that no carer should have to feel on their own – there is a staggering 8 million informal carers across the UK. Together, the UK’s experienced carers have built up an extraordinary well of expertise on how to manage this most complex of roles. We’re not talking about the formal advice given by medical or care professionals, but the every-day tips and tricks that make sense only when you’ve shared the same problem.

So how can we help carers tap into that well of expertise more easily? This is the challenge we’ve set ourselves at Mobilise. Helped by academic research and speaking to thousands of carers, social workers and carers centres we’re focusing on three main elements:

  1. Use everyday language

Most people don’t naturally talk about being a carer – they talk about ‘looking after mum’. The word ‘carer’ is important in flagging up the responsibilities of the role and directing resources and support. But to people in their early stages of looking after a family member, it can be a big psychological step – crossing a threshold of diminished independence and eroded existing relationships as a parent, sibling, child or partner.

By adopting the language naturally chosen by carers, we’re opening up a broader conversation about family caring roles and inviting new people to share their experiences and seek support from the community.

  1. Focus on real problems

The Carer Act 2014 was a major step forward in establishing the importance of supporting people in a caring role. But there is a danger that we rely too heavily on a fixed understanding of a ‘carers assessment’ as the gateway to finding the right support.

Carers UK recently found that only 27% of carers have received an assessment in the past 12 months. That’s not because local authorities are reluctant to offer them, but because it can be hard for carers to connect the filling out of another form to assistance with the real problems they’re struggling with day to day.

Instead we’re exploring how we can help carers to solve the real problems they’re grappling with whilst building up a picture of the support needs within the requirements of the 2014 Act.

  1. Technology can bring us together

There’s plenty of evidence that tells us one of the most effective ways of supporting somebody in a caring role is through peer support communities. With 8 million people caring for somebody across the UK you might think it would be relatively straightforward to match people up with a buddy.

However, that matchmaking exercise can be difficult – with so many different variables (age, relationships, condition type, progression etc) we can’t assume that the most relevant peer ‘buddy’ will live near you.

That’s why we’re exploring how technology can help to match carers with each other much more efficiently – in the same way that Amazon makes recommendations based on people who made similar purchases, we want to introduce groups of people who have experienced similar problems.

Looking after a member of your family is (or should be) a natural part of life , but it’s also one of the most challenging things we’ll ever do. Nobody should navigate the challenges of caring alone, if we can mobilise the community of carers across the country to lend a hand.

Read more about Mobilise here (this link will take you away from our website) and listen to carers podcast, Who Cares Wins?’ here (this link will take you away from our website).

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