In partnership with Healthwatch Essex, eight charities joined together in Essex to run the 555 Neurology Project, urging the public to speak out about their experiences of being diagnosed with a neurological condition.
These included brain injury, epilepsy, Huntington's Disease, motor neurone disease, multiple sclerosis, Parkinson's, Progressive Supranuclear Palsy or stroke, and affect over 35,000 people in Essex.
A series of focus groups took place across the county to capture the experiences of people who have been diagnosed with a neurological condition within the past three years. They were encouraged to talk about what being diagnosed was like and what would have improved their experience.
At a special meeting in May, patients from the focus groups shared their experiences face-to-face with the neurological professionals who deliver care in Essex. By listening to service users, they can help improve the diagnosis experience for future generations.
Dr Tom Nutt, Chief Executive Healthwatch Essex said: “The 555 Neurology Project sees many charities uniting to make a real difference to people affected by neurological conditions in Essex. The point at which a person is told they have a neurological condition is a pivotal moment in their life. We hope that by listening to patients’ experiences, we will help healthcare professionals in Essex understand what an impact this has on people’s lives and how it can be improved.”
Healthwatch Essex, an independent charity that listens to and represents the voice of users of health and social care in Essex, is working in partnership with the Essex Neurology Network to run this project. MS-UK, a national multiple sclerosis charity, hosted the focus groups in February and March 2016.
The charities involved were all part of the Essex Neurology Network, and included: Headway Essex; Huntington’s Disease Association; Motor Neurone Disease Association; MS Society; MS-UK; Parkinson’s UK; PSP Association and Stroke Association.
555 Neurology focus groups
To have taken part in the focus groups, people needed to be:
Over the age of 18 years old
Living in Essex
Diagnosed with a neurological condition within the past three years
Carers were welcome to attend to support people, however we the views of people living with neurological conditions were focused on.
These meetings took place on:
- Tuesday 16 February 2016, 1.30pm – 3.30pm, Chelmsford CVS, Chelmsford
- Tuesday 16 February 2016, 6.30pm – 8.30pm, Latton Bush Centre, Harlow
- Monday 29 February 2016, 1.30pm – 3.30pm, Disability Essex, Rochford
- Monday 29 February 2016, 6.30pm – 8.30pm, George Hurd Activity Centre, Basildon
- Tuesday 01 March 2016, 1.30pm – 3.30pm, Hythe Community Centre, Colchester