Quality requirement 10: Supporting family and carers

Carers of people with LTNCs are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.


Indicators of progress

Pooling data across Jackson’s 2011a and 2011b studies revealed that 46% of the total group of 424 carers had been offered a carer’s assessment at some stage. A number reported confusion over eligibility and a reluctance on the part of social services to assess adults cared for and carers separately. As a result, not all carers had been identified by health and social care professionals as having support needs in their own right.

Respite or replacement care was the commonest service offered to carers following an assessment. The proportion of carers in Jackson’s 2011b study who would want to use these services would rise from 51% to 91% if various barriers could be surmounted. These included staff not being trained to manage adults with complex problems, or lacking insight into their psycho-social needs.

A total of 45% of the carers would need these services so that they could work, 84% would want day care or home-based services so that they could take a short break for rest/relaxation, with 59% wanting residential services so they could take a longer break.

 Inhibitors of progress

Fitzpatrick et al (2010) found that around a third felt they were not recognised (by GPs) as carers and as many felt their experience as carers was not recognised and valued.

  • Only 21% of carers had a carer’s assessment, and 23% who had not received an assessment would like one.

Jackson (2011a) found that three-quarters of the carers responding to her survey expressed a clear need for more help, advice and information about the neurological condition, key health and social care professionals and available support services. This finding was corroborated by Sackley (2011) and Fitzpatrick et al (2010).

Jackson also identified carers’ confusion over eligibility and a reluctance, on the part of service providers, to assess adults cared for and carers separately. She found that carers of adults with ‘hidden’ (cognitive, mood, behaviour) problems and those with multiple caring roles were less likely to be offered an assessment than other carers. Opportunities for discussion about how best to plan personalised care were lacking in this group.


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