Powerful testimonies at 555 event

Five people from across Essex provided powerful testimonies about their experiences of being diagnosed and coping with various neurological conditions at the launch of the 555 Neurology Project report last night (8th June).

At an event held at Chelmsford City Racecourse, the Healthwatch Essex project, run in collaboration with MSUK and in partnership with charities from across the county through the Essex Neurology Network, allowed senior staff from Essex Clinical Commissioning Groups, local neurologists and health professionals to come together to hear the lived experience of people diagnosed with a neurological condition in the past three years.

The five different speakers relayed their various experiences including having a stroke, and being diagnosed with conditions including MS and motor neurone disease. One talked about being told by a consultant that it was difficult to explain what being diagnosed with motor neurone disease meant as, “No two people have the same journey”. Another told how it had taken seven years to diagnose her MS and that she may have been living with for 28 years.
The project itself saw a series of focus groups take place across the county to capture the lived experience 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.

Neurological conditions include brain injury, epilepsy, Huntington’s Disease, Motor Neurone Disease, multiple sclerosis, Parkinson’s, Progressive Supranuclear Palsy and stroke, and affect over 35,000 people in Essex.

It was some of the patients from the focus groups that shared their stories at the event and were able to provide that lived experience face-to-face with the neurological professionals who deliver care in Essex. This sort of interaction, along with the report, sits at the heart of what Healthwatch Essex does. By facilitating ways in which professionals in the health and care services can listen to today’s service users, we can help improve that diagnosis experience for future generations.

Dr Tom Nutt, Chief Executive of 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’ lived experience, we will help healthcare professionals in Essex understand what an impact this has on people’s lives and how it can be improved.”

The charities involved are all part of the Essex Neurology Network, and include: Headway Essex; Huntington’s Disease Association; Motor Neurone Disease Association; Multiple Sclerosis Society; MS-UK; Parkinson’s UK; PSP Association and Stroke Association.

The latest 555 report builds on our previous 555 engagement work that allowed us to discover that newly diagnosed patients often find it difficult to locate and access information and support. As a result, we developed an ‘Information at diagnosis’ pad, to help GPs signpost their patients and their carers to the most relevant support organisation.

Read the full 555 Neurology Project report to learn more about this important piece of work.

For more information on the work of Healthwatch Essex visit www.healthwatchessex.org.uk and check out the Lived Experience training course.

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