Richard Cross, a member of the C4CC Co- Production team, blogs on why Carers Rights Day is so important to him.
For 12 years I was one of the hidden army of carers, looking after my wife Sheila, who had complex medical needs, which eventually led to her being wheelchair bound and totally dependent on me.
It was a 24/7 labour of love and I had to live life through Sheila’s eyes, to meet all her needs, yet stay in control of the situation.
It was tough.
At times it was difficult not to feel resentful and bitter at the hand that life had dealt us at a comparatively young age. I was only 47 when I gave up my full time work as a auditor.
I will admit as well that I made mistakes and had I been able to access more support, I could have made Sheila’s life a lot better, her health would not have suffered so much as a result.
It was only a chance conversation with a local councillor I knew in my area in Cambridgeshire that changed my life, and Sheila’s care for the better.
She was able to cut through the red tape and help me get a much- needed stair lift I had been battling for, without success, for the previous four years.
The connection with the local authority also brought me into contact with my local carers support group – The Carers Trust Cambridgeshire – and I have been acting as a volunteer and advocate for them ever since, as well as a range of other organisations, such as Carers UK and C4CC.
It is my own experiences that have made me so passionate about spreading the word that unpaid carers and their wider family have rights — now enshrined in the Care Act 2014.
As much as anything it’s about their legal right to have an assessment of their own, independent of the people they care for — so their needs can be evaluated — and support — such as respite breaks — provided.
Sheila died last April and in memory of her I am determined that we spread the word that not only that support is out there, but how rewarding it is to volunteer to help others find that extra help.
But there is still a long way to go in raising awareness. In my own county of Cambridgeshire there are an estimated 78,000 carers, but only 9,000 of them access any official support.
With an ageing population this is a problem that is not going to go away, but I’m proud of the work that we have done locally to address this situation.
All our GPs have signed up to a carers support scheme, so when a carer comes into their surgery — maybe just to pick up a prescription — their details are taken and emailed over to the Carers Trust, who in turn can signpost them to extra services and support.
This GP support is so important, not least because carers need regular health checks of their own because the rate of burnout among them is a real problem given the every day stresses that do not go away.
It was very different back in 1991 when I first went to my GP after Sheila had a nervous breakdown. I was supplied with the necessary medication, which came with strict instructions, but felt I had no real say in her ongoing treatment and care, or access to the sort of community support I was later to access, but almost by accident.
Despite changes of attitude, we still have a long way in ingraining the notion of co-production, championed by organisations such as C4CC and Carers UK, where carers and the patient have more say over their treatment and the services delivered to them.
But if we are able to achieve this, calling on all the resources that are available in communities, and yes, by people simply having the sort of conversations that changed my life for the better, then it will be well worth the effort.
In short, the three founding pillars of C4CC – Co-Production, Communities, Conversation – are the way forward in achieving better and more focused care for people with long term conditions and we all need to work together to make this happen.
Carers Rights Day is held every year by C4CC partner Carers UK and they want bring organisations together to help carers in their local community know their rights and find out how they can get the help and support they are entitled to. You can find out more in the Carers UK ‘Looking After Someone’ – a guide to carers rights.