Health and care: Recognition is not enough

The first carer I knew of was my mum.  When my Granny was diagnosed with cancer in her early sixties, my mum stopped working and for almost 18 months spent increasing periods of time caring in Newcastle, while my sister and I were at home just outside London.

Looking back at that time – and the care she later gave to my uncle, her father, and then my other grandmother – I have no idea how she kept going.  None.  And until I started studying the impact of informal caring, I had no idea that she was a ‘carer’, and I doubt she did either.

I have to admit, it feels slightly uncomfortable to start a Fabian blog with a personal story.  But one of the things that is most exciting about the Labour Party at the moment is the recognition of the importance of each of our personal stories, hopes, fears and experience.  That if we want truly effective (and cost-effective) public services, they must understand both what we have in common, and what makes each of us different.

Listening to the experience of carers is particularly important because their experiences are often hidden.  But what they do is vital – to those that they support, but also to the nation: Carers UK have estimated that informal carers provide £119 billion of care a year.

It is fantastic that Labour’s consultation paper on Health and Care specifically addresses the needs of carers.  Young carers, and parents caring for disabled children face some of the greatest pressures, and it is reassuring to see that they will be properly recognised.

Recognition alone is not enough, however.  Carers told me that they had no choice but to do what they do.  Politicians often speak of carers as if they’re saints, but as one single parent caring for his very young son pointed out – there just aren’t any other options.

Many I spoke to wished they could care more, but could not afford to stop working.  Others wished they could focus on work – for financial or emotional reasons – but simply could not afford alternative care.

Financial hardship is a drain on people who are already under huge pressure, makes it difficult for them to maintain their own health, has mental health implications and can impact the wellbeing of the whole family.  Labour should renew its commitment to ensuring that carers are supported to avoid financial hardship, either through work or where this is not possible, their contribution should be properly recognised through support for day to day living, and the additional costs that caring and poor health can bring.

For parent carers, looking at ways to cut out unnecessary bureaucracy and travel is essential. Endlessly repeating details of a child’s condition to one agency after another is a waste of precious time for carers, and a shocking waste of public resources. But we also have to think creatively about how we integrate social care and health care with other community services. For many parents of disabled children, the change that had made most difference in their lives was being able to get all the care their child needed on school premises, meaning they could return to work rather than spending time and money they couldn’t afford taking their children to appointments.

For many carers, caring is back-breaking, exhausting, and stressful.  Seeing a loved one struggle, their condition deteriorate, can make these pressures more difficult to bear: none of the carers I spoke to hid the fact that they had often reached breaking point, that despair was common.  These combined pressures can take a serious toll on carers’ health, particularly their mental health.  I would like to see a commitment to ensuring carers have easy access to mental health services, being given priority for talking therapies and other support.

Some carers told me of the benefits of cognitive behavioural therapy courses aimed at carers for example.  They need someone to turn to in an emergency, and therapy needs to be flexible to enable them to deal with emergencies that crop up without being discharged.  One woman I spoke to told me of the Catch 22 situation when she’d called social services for help she’d been told that if she was really in crisis, she wouldn’t have been able to call. As she pointed out, offering short term help at times of emotional crisis is a lot cheaper than the only alternative she could envisage – dropping her four children off with social services.

Placing a duty on the NHS to identify carers is an important step to ensure that carers are aware that there is help available for them. This can include carers’ allowances, carers’ credits towards pensions, support to take breaks, the right to request flexibility at work, not to mention the numerous voluntary services that provide a whole range of help from a friendly ear to training to help them get into work.     Once carers have been identified, there has to be the support they need to decide what is most effective for them and their families, and to combine caring with the other elements of family life. Reliable respite is essential. We need to look at how we can ensure alternative forms of care to supplement informal care are available where this is in the family’s best interest.

The policy document rightly notes that “for too long, carers have been invisible in the system, and often far too much is left to them.”  Labour’s approach to supporting carers must attempt to lighten the load – and where possible, give them and their families more choice and control, as well as support. Each caring story is complicated and, like that of my mum, places huge strain on the whole family.

Like my mum, any one of us can find ourselves caring at any time.  As the population ages, it is increasingly likely that more of us will – and some of us will find ourselves caring for several people over time.   Labour must ensure that this contribution does not become overwhelming, and as a society, we must find ways to reinvest some of the £119 billion they save to support those who give so much.