Who can help me? Exploring the experiences of carers supporting people with a neurological condition in Lancashire
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Healthwatch Lancashire spoke to 124 unpaid carers supporting someone with a neurological condition. They attended 25 community groups and conducted 27 case studies.
Four in five of carers in this study were registered as a carer with their GP. However, only 39% had received a carer’s assessment.
The majority of carers received information about their partner/relative’s diagnosis in a way they could understand. However, those who did not felt there was a lot of information given at diagnosis but not once the condition had progressed. There was a lack of follow-up appointments, medical professionals showed a lack of compassion, and they were given no information on how to manage symptoms or best care for their loved one. T
he most common form of support accessed by carers came from local organisations such as carers cafés and groups, followed by organisations for specific neurological conditions, Lancashire County Council Social Care Service, and Lancashire Carers Service. The most common barrier to accessing support by carers was not being offered any support and not knowing what support was available. Additional barriers included the individual with the neurological condition not wanting to access support, work commitments, finances and a lack of support offered by GPs.
The caring journey was described as exhausting, stressful and lonely. Caring responsibilities impacted mental and physical health as well as finances, social life and family relationships. The majority of carers expressed a need for clearer guidance on what support is available to them and signposting to support. Continuity of care was also desired by carers as well as information about the progression of symptoms, financial advice and information about respite care.
These findings have informed a series of recommendations for the attention of Lancashire County Council, Lancashire and South Cumbria Integrated Care Board, Age UK Lancashire and Lancashire Carers Service to help improve the support offered to carers who are supporting people with a neurological condition.