Opinion: Carers are paying for medical progress

Peter Cardy, chief executive of Macmillan Cancer Relief

I'm on tenterhooks as I write this, waiting for my niece to call.

Since my father developed prostate cancer and died last year, she and I have been progressively sharing the care of my mother. Not equally, I'm afraid, because I live 80 miles away and both niece and mother think my job is too important, so they don't ask me to give extra help. My niece takes the strain during the week and I stay at weekends, but since the old lady has had a series of mini-strokes and falls, the strain has become that much greater.

When she calls around midnight, sometimes it's to ask me to drive down to take the nightwatch. My bag is packed and in the car, my excuses rehearsed if necessary for the next morning's meetings. But tomorrow there are meetings I feel I can't miss: Number 10, a reception in Parliament, the AGM. My niece, meanwhile, has a family to raise and a job to hold down; although she lives only a few miles away, she can't drive. I experience the kind of dilemma family carers face day in, day out: how much more can I do and how much is enough? But at least there will be some relief when my mother's residential care place becomes available in a few weeks.

Carers Week (13-19 June) highlighted the stress that millions of carers face, sometimes unrelenting for years with conditions such as MS or Parkinson's.

In cancer I see starkly how all the attention, the high-tech care and the relays of specialists focus on the patient. The carer, meanwhile, is left out of the loop and the support is directed elsewhere. Then the chemotherapy stops, the scans are clear and both patient and carer are left to face months or even years of rehabilitation, relapse, remission and sometimes recovery. With the process spread out over decades, it is hard to comprehend how carers survive.

Somehow I doubt that a golden age ever existed when care provided by families was equal and selfless. Which makes it all the more important that charities such as Carers UK, Crossroads, Rethink, HTA, the Princess Royal Trust, MS Society and Macmillan - the Carers Week partnership - work together. Increasingly, disease or condition-specific charities recognise the needs of carers by widening their scope from "patients with ..." to "people affected by ...". These are just words, but they can lead to action. As healthcare has improved and people spend more of their careers as patients at home rather than in hospital, the price is to be paid by the carers.

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