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Advocacy for those with long term neurological conditions. A survey of need
The Towpath Trust has conducted an investigation on the need for advocacy for those with neurological disability. The results of the survey demonstrate the need for Independent Advocacy for those with neurological conditions. The Trust now aims, in partnership with other organisations, to campaign for wider access for this client group.
 Of all long term conditions they most commonly result in loss of self-esteem and mental health issues. Many neurological conditions are associated with subtle unrecognised cognitive impairments that impact upon the ability to self-represent.
'I get muddled up and don't have much confidence'
There are many who struggle independently to resolve issues that cause distress because of poor numeracy/literacy skills, difficulty in understanding complicated systems, difficulties in accessing relevant information, poor confidence, mental health issues, sensory impairment, low intellect, poor education, poor social skills, difficulty in controlling emotions and impaired cognitive function.
The conclusions drawn from the research are:
- The study shows concordance between organisations and service users agreeing to the need for Independent Advocacy for long term neurological conditions.
- Health and social care systems are complex and difficult to navigate.
- The response rate, whilst low, was anticipated and comparable to similar postal surveys.
- The issues highlighted by organisations and service users are similar across a range of conditions suggesting that a generic rather than condition specific advocacy service is required.
- The volume of unmet advocacy need can be assumed as substantial and identifying resources to service this need challenging.
- Independent Advocacy enhances rather than impedes self-management.
- The need to explore the role of Independent Advocacy across a range on non-neurological long term conditions is evident.
A presentation showing the full findings can be found on the SIAA website.
Find the Summary Document here.
Read more about this project in the Summer edition of the SIAA Magazine, About Advocacy.
For more detail, please contact Tim Bone at timbone@towpathtrust.org.uk.
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