“I work for an organisation that provides support for carers”.
“What, like the one that goes in to help dress my Nan?”
I stifle my sigh as I explain for the umpteenth time that I work for a charity that supports people who are often providing nursing care for their partner, child, parents, or friend – often putting the needs of the person they care for first – which has a detrimental effect on their own health needs. Carers, the term often misunderstood by many as paid agency workers or volunteers and not as the experts in the care of the condition of the person they have been caring for selflessly for years.
In my role I find myself saying ‘what about the carers?’ to health professionals too often. I can hear myself saying it in my sleep, flailing my arms around as if I am trying to stop an avalanche in flow. STOP! But that’s what it is like for family carers, struggling against an unfailing onslaught, resigned to the life they have been dealt, chanting ‘for better or for worse’ as they get up for the fifth time that night. Young carers who, aged nine, worry while they are at school about their dad who was unwell again that morning: “what am I going home to?”
Admitting you need help is like admitting you have failed, are a bad mum or friend. “What could I have done better? Why are they getting worse when I am run ragged trying to help them?” Learning how to peg-feed, give medications and very occasionally saving their lives.
I failed too, I felt bad, tired, angry and so sad that I wanted to run away from this part of my life. I do not see myself as a carer at all – I am a professional, a mum, a friend and a quizmaster (for my sins) first and never, ever label myself as a carer to others. Family carers have many skills, some of them long forgotten and some learned not through choice. Many family carers do not have employers like mine who understand but end up having to leave their job, colleagues and skills behind. It can be an isolating existence, being a carer.
How do we find carers in the confusion of health services that tend to focus on people with health needs and not their families? We now have recognition for carers through the Five Year Forward View and the NHS Commitment for Carers, which has added a bit of substance to the call for more support. Let’s not misuse that substance. Let’s not just assume that when the person comes out of hospital too early, with delirium, with deteriorated dementia and a bag of medication, that it’s okay because the carer is there. How about thinking that they may not be able to cope with the medication, the line of medical professionals coming in and out of their home, the peg-feeding, giving injections and the sleepless nights wondering if their loved one is still breathing?
Picture this – a nurse standing by the bed within a hospital, trained, with lots of support at hand. Now fast forward a few years: it is the carer at home in bed with someone with delirium. Nurse Carer, unpaid, untrained, unsupported.
Let them have confidence, reassurance and the tools they need to navigate the maze that is our health service with their partner, friend or mum. Empower them to shout ‘what about the carer’ for themselves.
I will continue to say ‘what about the carers?’ – challenge the developing health transformation plans, help carers to be included in hospital discharge planning and help them find an ok place to be. The Hospital Carer Friendly Award[i] in Suffolk is helping hospital and ward staff understand carers needs, identify them, speak to them and work with them as equal experts. Whilst this is a good start, we aren’t there yet. The journey of helping health staff identify and include carers’ needs will continue.
There are 7 million carers in the UK, they are saving the NHS billions.
Hayley Hancock
[i] Carer Friendly Hospital Award is a process that celebrates positive working practices for carers with health professionals across the hospital.
