Not NICE enough

Healthwatch Staffordshire and Healthwatch Stoke on Trent worked with the Staffordshire Neurological Alliance to examine the experiences of people living with Parkinson’s disease, Multiple Sclerosis (MS), and Motor Neurone Disease (MND) across Staffordshire and Stoke-on-Trent. The study aimed to assess whether care and treatment pathways met National Institute for Health and Care Excellence (NICE) guidelines by conducting in-depth interviews with 52 people: 24 with MS, 19 with Parkinson’s disease, and 9 with MND. 

Overall, the research found that while many patients received good-quality care, there were significant gaps in support, particularly around diagnosis, access to specialist services, palliative care discussions, and timely referrals. Delays in diagnosis and inconsistent access to specialist staff were common concerns across all three conditions. 

Parkinson’s care was found to be the most consistent of the three conditions and generally aligned well with NICE guidance. Most participants reported positive experiences, particularly regarding access to specialist nursing care and ongoing reviews by experts. North Staffordshire was reported to provide the most consistently positive care.

However, some patients experienced long delays in being referred to a neurologist and obtaining a diagnosis. Access to physiotherapy and discussions about future care and palliative care were also identified as weaker areas. Participants described frustration at waiting months or even years for specialist assessment and receiving little information while awaiting diagnosis. 

Most people with MS reported receiving care that broadly met NICE guidelines, particularly in relation to annual comprehensive reviews and support during relapses. Nearly four-fifths of respondents said they received regular reviews of their condition.

Despite this, support at diagnosis was a major weakness. More than half of respondents said they were not given adequate information or support when they were diagnosed. Many also reported a lack of follow-up appointments after diagnosis and difficulties understanding their type of MS or how the condition might progress. Some felt they had to find information themselves and lacked a clear point of contact to coordinate their care.

Care for people with MND was found to be the most variable and inconsistent across the region. While participants generally reported positive experiences with symptom monitoring, respiratory assessments, and nutritional support, many described major shortcomings elsewhere in the pathway. 

Patients frequently experienced delays in recognition and diagnosis, a lack of information and support during the diagnostic process, insufficient psychological support, delays in obtaining equipment, and limited discussion about advance care planning and end-of-life care. Participants also highlighted the absence of specialist MND nurses and reported that support for family members and carers was often lacking.

The study identified several recurring issues across Parkinson’s disease, MS, and MND:

• Patients often received little information or emotional support while waiting for a diagnosis. 
• Delays in referrals to neurologists were common.
• Access to specialist nurses, therapists, and equipment was inconsistent. 
• Palliative care discussions and advance care planning were frequently absent or delayed. 
• North Staffordshire generally received the most positive feedback and demonstrated the greatest alignment with NICE guidance. 

The report recommends providing patients with clearer information about what to expect during diagnosis and treatment, including information packs based on NICE guidance. It also calls for improved support during diagnosis, greater collaboration with patient support organisations, recruitment of additional specialist nurses and therapists, and action to reduce waiting times for referrals to neurology services. The authors suggest developing tools to help GPs identify neurological conditions earlier and make more timely referrals.