The purpose of Healthwatch Essex is to bring to the fore the experience of people who come into contact with NHS or care services, and to highlight what it is actually like for real people when they need a health or care service. It is all too easy for any provider of services to slip into ways of working that are organised around the needs of the organisation, rather than the needs of the people they serve.
At Healthwatch Essex, we work hard to try to make sure that health and care services are designed around the needs of services users, and one way of doing this is to hold up a mirror to the people responsible for providing those services. In turn, we hope they can then adapt their practices to better meet the needs of the people who use them.
There can be no better example of this than when we held a recent event at Chelmsford City Racecourse to unveil our new neurology project report.
Working with MS-UK, and other neurological charities, we talked to many people with lived experience of being diagnosed with a neurological condition over the past three years. They were encouraged to talk about what being diagnosed was like and what might have improved their experience.
We talked to people who had brain injury, epilepsy, Huntington’s Disease, Motor Neurone Disease, multiple sclerosis, Parkinson’s, Progressive Supranuclear Palsy and stroke. Sadly, we could only speak to a tiny number of the 35,000 people in Essex affected by these conditions, but what they revealed was fascinating.
Having run a series of focus groups across Essex, we then invited a handful of people along to share their stories face-to-face with the neurological professionals who deliver care in the county. The aim being to help improve that diagnosis experience for future generations.
Senior staff from the NHS including local neurologists, nurses, and health professionals came together at the racecourse and listened to five people with powerful testimonies about their experiences of being diagnosed and coping with various neurological conditions.
At the event, they relayed their various experiences, with one telling those present how it had taken seven years to diagnose her multiple sclerosis and that she may have been living with it for 28 years.
Another who suffered a stroke while out cycling with his brother gave his perspective and what it was like to be suddenly struck down with a condition and the impact on both his body and his state of mind. He also talked about the excellent care he received in A&E that day.
Many of them talked about the difficulty in fully understanding what to expect given that – as one participant revealed quoting his consultant – “No two people have the same journey”. A number of those involved spoke about how they valued the honesty of that sort of feedback.
Listening to the stories of individuals who had been through the system gave an insightful perspective on both the experience and the processes that surrounded this area of work.
What we learnt was how systems and processes – and sometimes poor communication – can work against the patient receiving the best possible route to diagnosis and treatment, in spite of best intentions and efforts made.
It gave everyone present a chance to reflect on what could be done to improve things. I hope others will read the report and also think about the significant impact a good path to diagnosis can have.