Putting Carers on the Map: A history of Carers UK
Putting Carers on the Map
In 1974 when local government in England was reorganised, The National Old People’s Welfare Council reinvented itself As Age Concern and set itself to open an Age Concern branch in every new Metropolitan Borough, funded by Urban Aid grants. My first job using my social science and Health Services Administration Degrees, as well as my experience as a City Councillor in Leeds, was to establish Age Concern South Tyneside, with small office premises right opposite the Social Services Department.
A theme I often heard from Social Workers was “nobody cares for their relatives any more”. Surprising then that my office soon became a drop in centre for people frustrated with the response across the road. I still remember some of those callers, a woman being expected to care for, and lift, her 20-stone mother-in-law whose house had become a hygiene risk. A single man, shaking after the death of his mother, whom he had cared for in her pensioner’s council bungalow, single-handed, for 3 years, saving the town the expense of home helps, district nurses and hospital or nursing home. “What’s he doing in a pensioner’s bungalow?” asked the irate housing officer I rang. “He’s illegal, he’ll have to get out”… and so on, and so on.
I was only in my twenties and lacked the authority to make claims on behalf of this invisible band of people. At the same time I was in the growing Women’s Movement and aware that caring for relatives was not one of the topics that preoccupied us, mainly because women tied up with this weren’t visible or vocal in the movement.
I decided we needed to try and quantify the problem. I got a small grant from the Equal Opportunities Commission who were mostly persuaded by the effect of caring on people’s work prospects. I had advice from local geriatrician Dr Klaus Bergmann and decided to look at two areas in local authority wards in North Shields. I put leaflets through the doors and soon found that as I called at each house to ask if anyone there had responsibility for a person with more than average support needs, of any age, people who had these were just waiting to talk to me. “Nobody’s ever asked us before” was the common theme.
Of the people in these areas I managed to survey, One in Four women and One in Ten men over twenty five had some extra responsibilities for a person who needed their support. The “average” carer in my survey was a married woman in her fifties with a part-time job. A lot of the extra work amounted to doing two lots of housework, laundry etc and two lots of shopping, as well as visits to GP and chemist. Often the same person was also trying to support a married daughter with child care etc. Ten hours a week selling bras at Fenwick’s store was a blessed respite from being dragged in several directions at once.
As well as printing my findings in booklet form I started a group for carers – for this was the new name we were giving to those we had identified -and among those who came to the group was a mother whose child was severely mentally disabled following a childhood illness, a much older woman whose husband had brain damage after an attack when he was a nightwatchman, and a former teacher now working as a school dinner lady so she could look after her mother who had had a stroke, and her sister who had MS.
I managed to persuade the Channel Four programme Grapevine to come and film our group, and the cameramen were visibly moved by everyone’s situation. I wrote and talked about carers as much as I could.
Somehow through contacts made by the Grapevine Programme a small group of people formed from around Britain, including Judith Oliver, Sandra Leverton and Geoff Hawley, all carers. We set up the Association of Carers and managed to get some funding. The first morning our phone went “live” after Judith was on the radio, we had 54 phone calls from people of all ages and classes and from all over Britain, and we discovered young carers who were frightened to ask for help in case social services broke their families up.
We set about the business of being part of professional training and at one stage made a video of one family’s situation. In order to go to a family wedding, Mr and Mrs …. had to call on these people to help. Gradually 21 people were lined up in front of their hedge, those who had come in to get their mother up and give her breakfast, those who had taken over the morning shift, and so on .
Spare Rib (feminist magazine) at last featured disabled women, and we were able to follow that with carers . Routledge and Kegan Paul published a book on Women with Disabilities and Judith Oliver and I were able to follow this with “Caring – experiences of looking after disabled relatives” published in 1985.
And by this time I was a carer too. My husband Brian Gallon had cancer and I experienced all the ups and downs of caring for a spouse with a life-limiting illness while bringing up children and working part-time, until his death in 1984.
When I worked for Age Concern there was already one organisation, the National Council for the Single Woman and her Dependants, founded by the Rev. Elsie Chamberlain in 1966. I had contacted them about widening their remit to include married women and male carers but their response was that “married women had their husband to help them”. In fact many married women were caring for their husband’s relatives as well as their own.
In 1986 my younger children and I went to the States and Canada and I remarried and settled in Canada, and I was so glad to hear that the Association of Carers had merged with the National Council and that in time the name was changed to Carers UK. Carers’ benefits had been established and attitudes were changing especially among employers.
From my recent work back in the UK as a hospital chaplain it wouldn’t surprise me at all to discover that the average age of carers was now somewhere in the late 60’s or early seventies. We are now living a whole generation longer and healthier than in the 1970’s. But the pressure on carers has not gone away, it has grown with (welcome) moves to community care, and increased longevity amongst many groups of vulnerable people.
When we started all this, “Carers” was often misread as “Careers”. Indeed spellchecker still pulls this trick. It’s good to have been in at the beginning of a movement to recognise and establish support for a huge group of people without whom the health and social services would be simply inundated with demand, and who lovingly and sacrificially care for their family members.