Last Updated on October 24, 2016
A new report from Healthwatch Essex explores how the public is negotiating the care maze and the process of decision-making when a family member or friend needs full-time social care.
This research, conducted by Healthwatch Essex explores the ‘lived experience’ of patients, citizens and social care users, aiming to inform improvements in local health and social care provision. The study involved speaking to a range of people, from those looking for somewhere for their elderly parent living with dementia, to others whose parent was living with multiple conditions and needing end of life care.
Previous evidence and Healthwatch Essex research had identified that pathways to negotiating residential care were a ‘maze’, leading to the study beign called Negotiating the Care Maze. One participant commented, ‘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, so forward planning – perhaps instigated by GPs and service providers – would help reduce the frantic nature of arranging care when the time comes.
The study pulls together real examples of the ‘lived experience’ of those seeking to place someone in a care home and has developed 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…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.