MPs from across Essex met with local Fibromyalgia campaigner, Billy Ray Mansell, to discuss what more can be done throughout the region to improve care for patients. Southend resident and fibromyalgia suffer, Billy Mansell, told MPs and NHS officials about the importance of raising awareness of the chronic condition and ensuring patients across Essex get the right treatment and support.
Fibromyalgia is a long-term condition that can cause sufferers to experience extreme fatigue, muscle pain, and cognitive difficulties. It is estimated that over 2.7 million people in the UK live with Fibromyalgia, yet the condition is little understood. The condition is often overlooked by GPs, and patients in the UK can wait on average 3-5 years to get a diagnosis. MPs also heard how patients were being let down by current clinical pathways, leading to long delay for treatment. In Southend, for example, there is currently no single streamlined care pathway meaning patients are experiencing very different routes to access services.
Local campaigner, Billy Mansell was diagnosed with fibromyalgia four years ago and has drawn upon his experiences to call for greater awareness and support for the condition. Earlier this year, Billy presented a petition to Parliament to get fibromyalgia officially recognised as a disability. Speaking afterwards, he said ‘Following the Fibromyalgia Back bench debate that the Fibro Petition succeeded in achieving. I met with Sir David Amess MP in Leigh-on-Sea, this was around discussing my journey and strategic vision. Which resulted in an invitation to present in front of Essex MP’s and NHS England and Essex Representatives. I asked the campaign leader, Adrienne Lakin to attend with me for support and because, we are aware that this issue is not only local but National as well’. Quote from Adrienne ‘There should be a National treatment programme for Chronic Illnesses and the post code lottery on this should be abolished and further innovations are needed. I support and agree with my fellow campaigner Billy Ray Mansell on what he is trying to contribute towards our National aims and his local community. We have collaborated together on this throughout the process of our campaign and Billy’s progression throughout his journey and his commitment and passion to continue to do so’.
Billy ‘Throughout the duration of my presentation in parliament, I advised of the journey that I am on and will continue to be on for the rest of my life. Included in my presentation, I put forward details about Pain Management and a Multi-disciplinary approach, along with how I see Essex as a perfect platform to contribute towards more research and treatment pathways, with clear synergies for many aims and objectives. This then reflects on my aims and objectives as a Coach Core Apprentice with Active Essex and my goals to help those with similar conditions. This also links with my role massively as an Active Essex, Essex All Together Ambassador within Disability and Inclusion Sport. (Believe, Achieve and Inspire)’.
Southend West MP, Sir David Amess, invited Billy to meet with Essex MPs following a recent debate in Parliament on the condition. Speaking in the debate, Sir David said that ‘lack of awareness leads not only to many suffering in silence, but to their often receiving inadequate support and treatment.’ He said that he was looking forward to working with Billy to raise awareness, investment and understanding of fibromyalgia and ensuring all patients get access to the best possible care.
