The report identifies significant variation in the quality of the commissioning of neurological services among clinical commissioning groups (CCGs). Findings include:
- Only 14.7% of CCGs have assessed local costs relating to the provision of neurology services
- Only 20.4% and 26.2% of CCGs respectively have assessed the number of people using neurological services and the prevalence of neurological conditions within their area
- Only 33% of CCGs obtain vital feedback from patients in regards to the neurological services they commission
- These issues have a significant impact on patients' care, with 58.1% of patients having experienced problems in accessing the services or treatment they need.
In response, The Invisible Patients sets out a number of recommendations including:
- Every CCG should collate up to date and accurate local neurology data, underpinned by routine and rigorous assessments of the prevalence of neurological conditions and of the number of people using neurological services locally
- All CCGs should ensure that mechanisms are put in place to encourage and capture patient feedback and input in regards to the quality and development of local neurology services
- CCGs should work in partnership to identify clinical and research trial opportunities locally and support the appropriate sharing of information on such opportunities with patients
Commenting on the report, the Neurological Alliance's Chief Executive, Arlene Wilkie, said:
"For too long, people living with neurological conditions have been the 'invisible patients', often marginalised by a system that doesn't understand their conditions or their needs. This has to change. I am delighted that this report provides a vital first step in exposing the true state of neurological services today. It is time for the health and care system to open its eyes to the needs of the millions of people who live with these complex and challenging conditions. They must be invisible no longer."
Headway - the brain injury association supports the Neurological Alliance's call to improve the commissioning of care for people with neurological conditions, and we welcome The Invisible Patients as an important tool in driving neurological service improvements within the health and social care landscape.
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