Neurological health

Healthwatch Lincolnshire undertook research on neurological health and conditions because they heard that support for these conditions was poor.  They heard from 375 people.

The conditions they most frequently heard about were:

• Fibromyalgia - 38%
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 13%
• Multiple sclerosis (MS) - 11%
• Migraines - 5%
• Epilepsy - 4%
• Functional Neurological Disorder (FND) - 4%

58%  were diagnosed correctly first time. Diagnosis times varied between less than one month and over 18 months. For 46%, getting a diagnosis took more than 18 months. 

Many patients reported feeling unheard and dismissed by healthcare providers. A lack of knowledge and empathy around certain conditions, like fibromyalgia and ME/CFS, led to delayed diagnoses which impacted patients’ lives, social connections, and employment. Frustrated with the lack of support, some sought private diagnoses. 

Even after being diagnosed, many were left to manage serious, life-altering conditions on their own.

29% were waiting for additional tests, treatments or diagnosis. Regardless of the condition or what they were waiting for, respondents shared they had often been waiting for months, with little communication or support offered in the meantime.

71% took medication for their neurological condition and 71% of these individuals had faced challenges getting medications that worked for them. Common challenges included side effects of medications, finding medications and dosages that helped manage symptoms, shortages and needing specialists’ input to change dosages. 47% had been offered or received treatment other than medication. Signposting to support and referrals to other services appeared to be inconsistent. Also, service users appeared to be unaware of what support is available and what could be beneficial.