Healthwatch Lincolnshire Neurological Health Research Project
Healthwatch Lincolnshire conducted a survey to understand residents’ experiences of accessing and receiving care for these conditions, ensuring that patient voices help shape the future of neurological health services in the county.
By gathering insights into service accessibility, diagnosis, treatment, and support, this report highlights both good practice and areas for improvement in neurological care. The findings will support Lincolnshire’s health and care system in reviewing and enhancing neurology services to better meet the needs of residents.
Key Findings
Healthcare Access and Experiences
- Diagnosis: 58% (205) were diagnosed correctly first time. Diagnosis times varied between less than one month and over 18 months. For 46% (153), getting a diagnosis took more than 18 months.
- Many patients reported feeling unheard and dismissed by healthcare providers. Alack 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.
- Waiting Times: 29% (108) 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.
Treatment and Management
- 71% (263) took medication for their neurological condition and 71%(88) 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% (173) 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.
Areas for Improvement
- Listen to patients and show understanding.
- Increase healthcare professionals' knowledge of neurological conditions including recognising fibromyalgia, FND and CFS/ME as real conditions.
- Provide clear information for patients on diagnosis, prognosis, and management.
- Establish local specialist neurological centres, hubs, or clinics.
- Improve access to pain clinics and better pain management strategies.
- Offer holistic support, recognising that individuals are affected in different ways.
- Develop local support groups, including options outside standard working hours.
- Ensure joined-up care with coordinated services.
- Reduce waiting times for specialist support and offer interim support while patients wait.
Watch our neurological health report findings webinar below.
Downloads
A full version of the report is available below. If you require the report in a different format or would like to discuss its findings, please email info@healthwatchlincolnshire.co.uk or call 01205 820 892.
