In a unique twist, the new study not only pulls together fascinating examples of the ‘lived experience’ of those seeking to place someone in residential care who can no longer be cared for at home, but it also develops the testimonies of participants into poems to help illustrate their stories.
“We wanted to do something that was both engaging and insightful and poetry struck us as a really good way to illustrate a lot of the frustrations and difficulties people face,” said Dr Tom Nutt, Chief Executive at Healthwatch Essex.
“We were particularly interested to understand both the practical and emotional challenges our participants faced, so we used innovative auto/biographical methods. By transcribing interviews with the participants and highlighting each use of the first person ‘I’ and associated verb or seemingly important accompanying text, we produced the poems.
“The same method was used to identify the ‘he’ and ‘she’ sentences so that the interviewee’s perspectives of their relative’s experiences are also highlighted. The resulting poems are very effective and really give a voice to how people felt and were impacted by the experiences they went through.”
The poems have been compiled into a separate collection to sit alongside the main report. The study involved speaking to a range of people, from those looking for somewhere for their elderly parent coping with dementia, to others whose parent was living with multiple conditions and needing end of life care.
One participant was dealing with his wife who had a history of many years of chronic alcoholism. This had seen her sectioned on a number of occasions and had meant that she had suffered brain damage as a result of her drinking.
Previous evidence and Healthwatch Essex research had identified that pathways to negotiating residential care were a ‘maze’, thus the title of the study – Negotiating the Care Maze. This was highlighted by one participant as particularly apt, with ‘Maggie’ commenting, “I didn’t believe how difficult it could be, and I think I’m relatively switched on and articulate, and I’m willing to fight my corner. I just couldn’t believe how much fighting you had to do.”
The main findings of the report reveal how difficult it is to obtain easy-to-understand information. It suggests that better signposting be put in place and that a more streamlined co-ordination of services is developed. It highlights that improved integration of health and social care delivery and budgets would greatly help people’s transition into full-time care.
Importantly, the report also recommends that carers need to be viewed as partners in care because often they are the glue and can help smooth the patient’s transition from one service to another. The need to negotiate the ‘care maze’ is becoming increasingly common as our elderly, frail population grows, so forward planning – perhaps instigated by GPs and service providers – would help reduce the frantic nature of arranging care when the time comes.
The report and poetry collection are both published today (21st October) on the Healthwatch Essex website: http://www.healthwatchessex.org.uk/what-we-do/our-reports/