I have written previously about my lovely mum and trying to help get her and dad the right support at home as her dementia took hold.
I reflected on the precious difference individual support workers made when they supported mum (and as such, dad too) the way she would have wanted. So simple it would seem. No uniforms, visiting for a chat, ‘shall I give you a hand with a shower while I am here’ – thoughtful, caring, informal. Probably the kind of support we would want for ourselves when we need it.
That simple. And yet despite the efforts of so many wonderful individuals it felt like the system was doing its very best to make this so hard for everyone involved. Rigid and inflexible rota patterns, health and safety (those pesky uniforms again), care and recording plans all conspiring to make a sad, scary and lonely time even more so. I don’t for a minute (well not many minutes perhaps) think this was the deliberate intention of anyone in the ‘system’ but the reality was that the outcomes my mum wanted – time to chat, the smell of home baking again, to feel of value and appreciated – were almost impossible to get. And for one of mum’s daughter – a.k.a. me! – who works as part of the social care system, I felt responsible and guilty that even with my experience I couldn’t make it happen.
Mum is now living in a nursing home, and she is very well cared for, yet we rely on posters like this and photos from her life to help the many lovely but very busy people to see mum as Brigid, and not just another old lady to be washed and dressed. A woman rich with life experiences, with value and agency. It still feels remarkably hard.
That’s why movements like Social Care Future matter – it must not be this hard. For younger people too who draw on care and support we must provide the hope and the opportunity to lead long, happy, fulfilling lives doing what makes us happy. There are lots of people working within support provider organisations who want to be part of something different co-designing solutions with disabled and older people.
We saw lots of examples of this at The Big Connect as part of our More than a Provider initiative last month in London. We saw some wondrous glimpses of the future in the most inclusive room I have had the privilege to be in for some time. Nearly 200 people saying I want it to be different and I can be part of making it happen!
Building a movement that will drive real change requires providers to be willing to change too. Stating the glaringly obvious, but too often it’s too easy to fall back on ‘if only commissioning would change’ or ‘policy makers’ or ‘the government’. Of course, we need change at every level, and I don’t underestimate the scale of this. But we can’t wait. People’s lives are at stake. Aren’t we a ‘good enough’ group of people to get going? If you agree I suggest you make that step and sign up for The Big Connect.
I think my lovely mum, if she could, would say ‘you don’t have time to waste – what on earth are you waiting for?’