Neurological Care in Northern Ireland – Findings from My Neuro Survey 2024/25

My Neuro Survey 2024/25 is the UK’s largest patient experience survey for people with neurological conditions. It was delivered in collaboration with Neurological Alliances across the UK and Republic of Ireland. With over 10,000 responses across the UK—including more than 300 from Northern Ireland—this year’s findings highlight urgent challenges in access, support, and responsiveness within the healthcare system for people living with neurological conditions in Northern Ireland.

1. Left Without Support: Living with a Neurological Condition in Northern Ireland

“I was under the care of a consultant... I was due to start a new treatment plan, and I received a letter informing me my consultant was retiring, and the trust were not replacing him. I have been left with no consultant, no treatment, no follow-up absolutely nothing. I feel like I am back at square one, right at the beginning of my diagnosis. I feel completely let down and like my life is at a standstill.”

A widespread lack of support emerged as a defining aspect of the healthcare experience for people with neurological conditions who responded to My Neuro Survey in Northern Ireland.

• Only 22% felt supported by the healthcare system—the lowest across the UK

• 64% disagreed with the statement “I feel supported by the healthcare system” compared to 44% in Wales, 53% in Scotland, and 48% in England.  

• Just 24% agreed that services meet their needs

• 55% were unhappy or very unhappy with their healthcare experience

2. Struggling Alone: Daily Life With a Neurological Condition

Living with a neurological condition already brings daily challenges. But in Northern Ireland, people are not getting the support they need to cope:

• 92% struggle to do things they enjoy

• 88% struggle to complete daily tasks or socialise

• 89% struggle to stay active

• 84% say their condition affects work or study

• 83% report strain on romantic relationships

• 84% struggle with family relationships

• 65% say they are not coping well with their condition

3. Access to Care is Falling Short

“I am under the care of a fantastic neurologist, but it has been telephone appointments only since 2019. My 6-month review appointment is also currently 9 months late. The downside of the health service in Northern Ireland”

People in Northern Ireland reported greater difficulty accessing specialist neurological services than those in England, Scotland, or Wales. Examples include:

• Inpatient Neurorehabilitation: 82% reported difficulty

• Neuropsychiatry: 80% reported difficulty

• Neuropsychology: 71% reported difficulty

And even when people reach services:

• Only 35% felt they had enough time in appointments

• Only 21% could get a follow-up appointment

• Just 29% had a consistent healthcare professional

• 37% had needed an emergency hospital visit this year to access healthcare—the highest in the UK

4. Living with a Neurological Condition Comes at a Cost Many Can’t Afford

Nearly half (48%) of respondents in Northern Ireland could not afford the extra costs of managing their condition, including transport, therapies, equipment, and private appointments.

5. Mental Health Needs Are Overlooked

• 43% of people in Northern Ireland said they had no one to talk to about their mental health

• Just 50% understood their condition and treatment

• Only 32% had access to support between appointments

6. Carers Are at Breaking Point

Carers in Northern Ireland are facing disproportionate strain:

• Only 15% feel supported in their caring role

• 62% have had to reduce or leave work due to their caring responsibilities

• 86% reported detrimental financial impact due to their caring role —more than any other UK nation

Conclusion

Only one in five people feel adequately supported by the healthcare system in Northern Ireland. A significant proportion report unmet needs and challenges in accessing care. There is a clear and urgent need for transformation and investment to ensure all individuals living with neurological conditions receive the support and services they require. Prompt and decisive action by the Department of Health is essential to address these gaps and improve outcomes.

About the Survey

For more information on My Neuro Survey visit: https://www.neural.org.uk