#realCarersWeek – What Matters Most?

Written by: Lynn Williams

For 'Real Carers Week 2018' Lynn outlines 10 changes that would make a real difference to the lives of Scotland's unpaid carers.

I’m a big music fan with (as my husband would say) a pretty “eclectic” (or rubbish!) collection of singers and groups I love to listen to. A current favourite is Thea Gilmore, and a particular song of hers is resonating strongly with me as we get into yet another #CarersWeek. It’s called “Rise”, and the lyrics are poignantly apt for the many 100,000s of carers in Scotland: “Are you lost, are you tired, is the road ahead unmade? Are you worn? Did the storm, tear up every stone you laid?”

The lyrics here sum up concisely the collective feeling amongst many thousands of carers at the moment.  Tired of fighting, heart-worn, lost and without anywhere to go.

In the week when yet another Integration Authority says that unpaid carers must do more to plug gaps in care, many of us feel that the challenges which make our lives harder are being erased from the political map. The Carers Act is in place, therefore, carers’ issues are “done” – that’s the current message. And yet, NOTHING could be further from the truth.

So, we enter another Carers’ Week and many of us do so with real cynicism.  Yet, this week provides us with a focal point, and thanks to charities like the ALLIANCE, the chance for us to say something more about the kinds of things which would radically improve the lives of carers…to speak “truth” rather than deal with the usual platitudes about carers as unsung heroes (please, no!).

So, the rest of this blog is dedicated to carers in Scotland. In their words, a “pick of the pops” – some of the key changes which would make a difference to them and to their families:

  1. To be listened to by professionals: for them to accept that we know our loved ones better than anyone else, no matter how qualified they may be. Treat us as equals in the care of the person we look after.
  2. Care arrangements for my daughter that are solid and secure, with a plan for crises and future supported accommodation in place (not, “try private landlords, there’s no social housing”).
  3. For social work to help, not hinder us.
  4. To be able to take off my battle gear and lay down my sword; to be listened to instead of having to fight for everything.
  5. To not be afraid of the “brown envelope”, and for DWP to treat our loved ones with compassion.
  6. A proper earnings replacement benefit for carers and a social security system with less bureaucracy. All carers should be entitled to Carers Allowance, regardless of their income and status.
  7. Effective emergency planning and access to respite.
  8. Flexible funding for all carers/cared for to meet the needs THEY identify and the services that they need to get by, with no box ticking or professional “judgement”.
  9. I want support with the mundane so I can get on with providing expert personal care; but they won’t cover that so, no support and I’m left to get on with everything. It’s exhausting.
  10. Early intervention – listen to our families and don’t leave it until it’s too late.

The final ask from one of our carers is this – a Scottish Government minister for care and caring, who works across portfolios to bring change.

Many of these “asks” are relatively easy, others less so. But political leadership and will are essential if we are ever to create a world which properly values our families and the billions of pounds of unpaid care we provide.

This year, a small, hardy band of unpaid carers will be taking to Twitter to share our ideas for creating a better world for carers. Check out  #realcarersweek and join us to share your ideas and thoughts.  It really is time for a little less conversation and more action.