As we come down to earth after the amazing fortnight of the Olympics, we resume our series of ‘walk in my shoes’ blogposts, looking at dementia from different perspectives. Andrew Cozens, Chair of Carers Trust, makes a powerful analogy comparing the amazing feats of recent weeks with the tortuous journey carers face as they try to to navigate the maze of social care and health. How Andrew avoids the temptation to say “after all, it’s not rocket science” is beyond me …
This month we showed that we can deliver a wonderful Olympics and that the US can land a probe on the surface of Mars. With that level of organisational ability available, why is it so difficult for carers of people with dementia to navigate their way through our health and care systems?
The reason, of course, is simple. You can work out all the components of a successful event or mission and predict and plan for most of the risks you might encounter. With health and care, bits are plainly missing and if looked at from end to end, it just won’t take off.
Andrew Dilnot called this systemic failure our society’s grubby little secret. But the secret is out now and it is a serious failure of political clout and will that we are not setting about fixing it.
The day-to-day reality is that every new carer risks finding themselves planning a failed Mars mission on their own. This is outrageous and wasteful given that an estimated million carers begin caring every year.
During the Olympics I got a tailored message helping me plan my journey and suggesting things I might do that day. Bizarrely we have no systematic way of just identifying carers through their family doctors or hospital records, even if they present themselves as such and needing help.
Carers Trust, that I am privileged to chair the trustees of, has brought together two national charities, the Princess Royal Trust for Carers and Crossroads Care, and our local network partners. Our ambition is to substantially increase the number of carers we reach through carers centres, Crossroads schemes, and our online activity to a million a year.
Our work is driven by the direct experience of carers, both positive and negative, and through that helping carers with their individual journeys by sharing that collective learning. Through Crossroads we also seek to offer the highest quality and carer-friendly care and support services.
But another key part of our mission is to work with our partners to highlight the failings of the system and the urgent case for reform. We do this by bringing our carers’ direct experience to the attention of politicians, policy makers and service commissioners. We celebrate when things are going well and highlight when they do not. The failure of the NHS in parts of the country to invest earmarked funds in carers’ breaks is a high profile recent example.
The forthcoming Bill offers an opportunity to strengthen the legal status of carers. It mustn’t be another rocket launching them into a lonely and unsupported space.
Andrew Cozens is Chair of Carers Trust and a freelance consultant in care and health
To borrow Andrew’s phrase, this whole guest blog series aims to “celebrate when things are going well and highlight when they are not”. Piece by piece, we are building a jigsaw showing the big picture – but are some pieces missing without trace? Please check back through the series to read many powerful stories from carers.
For practical advice and support, please also check out Wendy Maxwell’s post about Chill4UsCarers website that offers 24/7 support for carers who have access to the internet.
For an example of a truly inspiring campaign led by son and carer Tommy Whitelaw, please see his blogpost and video.