A job in a children’s hospice gave Liz Willets a chance to use her own experience positively but it was a different story when she tried to help arrange care for an older person
The best decision I made was to apply for a post at a children’s hospice. In the 20 years or so since my own daughter died, I had been back into higher education – in what now feels like a self-indulgent detour – and then qualified as a social worker.
I moved from a local authority social services department to this specialised and emotive area of work in the voluntary sector, knowing that it was vital to get the balance right.
I knew something of what the families were going through but had to hang on to a sense of objectivity and the knowledge that every family’s experience is unique.
Recognising professional boundaries, and not extrapolating from my own experience as if it were a truth universally acknowledged, was sometimes a challenge.
Looking back on training sessions I ran for hospice staff and external participants such as social workers, I realise I made up my mind whether to refer to my own experience according to what I felt would be useful to the particular group.
Sometimes it was helpful to share how much difference small things can make with staff who expressed their uncertainty about how to support parents.
Sometimes it felt that sharing my own information would inhibit open discussion because participants would not want to hurt me by talking about or questioning things that might resonate with my situation.
Without doubt, it was a most fulfilling period of my life.
I tried to share some of my professional experience with people I knew who were arranging care for an elderly relative.
No one can “un-know” what they know. It was painful to be aware of organisations and agencies that could have helped. But even the most tentative and diplomatic suggestions or offers of information were rejected out of hand or seen as criticism.
It was an unhappy situation for the elderly relative whom we all loved dearly and who deserved, and could have had, better care sooner.
I don’t know whether I would make the same decision again. There is no doubt that the person concerned could have had more appropriate care, and lived independently more comfortably and for longer. But the damage to relationships may be too high a price to pay – not just relationships between the relatives, but the tensions sensed by the person needing care.
My decision didn’t achieve better care but perhaps it led to more awareness of the ways in which families and friends interact under pressure. Perhaps one day that will be useful. At the moment it just feels sad.
Liz Willets is director of support services at The Jennifer Trust for Spinal Muscular Atrophy
This article is published in the 30 April issue of Community Care under the heading The pros and cons of personal experience