My Neuro survey Wales report 2022 from the WNA

Whilst we are cognisant that the pandemic has brought with it unprecedented demand on all health and social services, two years hence, the situation for people living with neurological conditions in Wales is now at crisis point and they feel abandoned [WNA]

8,510 people living with or affected by neurological conditions across the UK completed the My Neuro Survey, 503 from Wales. Results are now available in the Wales Neurological Alliance (WNA) report: My Neuro Survey Wales.

People living with neurological conditions in Wales continue to report substantial barriers to accessing the treatment, services and support that they need from health and social care services. [WNA]

Survey aim?

To understand the demand for and impact of services for people living with neurological
conditions in Wales

Who?

Of those who completed the questionnaire, 93% (n=462) lived with a neurological
condition; 7% were carers, friends or family members of a person with a neurological
condition.

The most reported conditions were:

• Multiple sclerosis 23.1%
• Other 22.3% (includes people with ME)]
• Dystonia 10.7%
• Epilepsy 9.1%
• Migraine 7.6%
• Parkinson’s 7.6%
• Myasthenia 7.6%
• Huntington’s 4.4%

Results

There were several themes emerging from the My Neuro Survey, these include:

The Wales Neurological Alliance’s response:

Urgent action is now required by those who plan, commission and deliver our services to address the shortcomings and ensure that people living with neurological conditions are not left behind in the post COVID recovery planning.

Download the report in Welsh and English

What next?

WAMES, as part of the WNA, are backing the:

• Neurological Early Diagnosis Co-production Group
• #Backthe1in6 petition

1 in 6 people in the UK live with a neurological condition, but there simply isn’t the workforce or services in place to support them.

From delays to lifechanging treatment and care, to a lack of mental health support, we need Governments across the UK to back the 1 in 6, and set up a Neuro Taskforce to deliver real change.  Sign our petition today!

WAMES (and the WNA) are also in discussions with the Welsh Government Neuro / ME lead, exploring ways to help Health Boards improve healthcare for people with ME and #ImplementNICEmecfs. You can help by sharing with us your recent experiences of health and social care so we are up to date with any changes that are (or are not) bring made.