In light of the recent publicity around the ongoing crisis in social care, Parkinson's UK Chief Executive Steve Ford explains that local councils are still failing to give appropriate and reoccurring assessments of the needs of people living with Parkinson's.
Back in 2015, the Care Act outlined how local authorities are required to offer people living with Parkinson's and their carers an assessment of their care and support needs. Yet, a year on, at Parkinson's UK, where we work with government, the NHS and others to make things better for those living with this degenerative condition, we find that local authorities are simply not fulfilling this legal duty.
We surveyed our members, and 354 shared how these changes had impacted them. Most importantly, we wanted to find out how many people were receiving adequate and regular assessments and on what basis the councils were allocating their often stretched budgets.
What we found was both surprising and disappointing.
The report, undertaken by Parkinson's UK, highlights a system that is failing to properly obtain and collate data on the services being provided to people with Parkinson's and their carers. Of the 148 local authority bodies asked for information under the Freedom of Information Act, only 45 could provide a response.
On the face of it, most of the local authorities neither knew how many people needed their help, nor how many they had actively reached, meaning those who are supposed to be providing support do not know how many people with Parkinson's are in need and how many are being assessed.
How can we ensure people with Parkinson's get access to social care services if local authorities don't know who they provide services to- or who they should be reaching out to?
The survey, although a small snapshot, finds that those with Parkinson's are largely not being provided with proper assessments of care. The result is that support tends to be given at the point of a crisis. Over half of respondents with Parkinson's and the quarter of respondents who care for someone with the condition said they had not received an assessment of their needs. A significant number of respondents simply did not know how to request one.
This reflects findings from previous research suggesting that people with Parkinson's do not know what social care is available to them, or how to access it until they reach crisis point. This is not the way the system should work.
We hope that the Department of Health and others will act upon our recommendations. The vital first step is for all local authorities to improve accessibility of social care information and make social care assessments easier to request. They should also gather better data on the number of people with Parkinson's in their catchment area to ensure they are actively reaching out to them, and guarantee an annual assessment for social care for every person living with Parkinson's who needs it.
This should be achievable for all local councils.
It's time residents with Parkinson's are given the focus and the social care they deserve, and the route to that is for councils to start taking some of these steps to fulfil their responsibilities under the Act.