Paul Amlani-Hatcher (Panel chair)
'I joined the BSR Patient Panel as I felt that I could offer a particularly useful input given that my diagnosis for rheumatoid arthritis was relatively recent, in 2015.
I feel that I benefited from the early referral as my RA is now in remission and I have practically no visible joint damage. I even remember my rheumatologist saying that I was part of the pilot for the NEIAA new reporting.'
Roger Stevens (Vice chair)
'As soon as I heard about the NEIAA work I was keen to be involved. My diagnosis of Ankylosing Spondylitis was relatively quick back in 1991, but I have been aware through my involvement with NASS (National Ankylosing Spondylitis Society) of the fact that the average time for diagnosis is currently around 9.5 years. This is an improvement from 12.5 years at the start of the decade, but still rather longer than necessary.
The NEIAA will help to provide a stimulus to help improve diagnosis and treatment for all types of inflammatory arthritis and if I could help in a small way to assist the work of the project, I am happy to do so.
I owe my mobility to the superb work of the NHS rheumatology team and physiotherapists at Queen Alexandra Hospital, Portsmouth, and this is a way of giving something back.
Tom Esterine
'I have a few reasons for wanting to take part in the BSR NEIAA Patient Panel. After being diagnosed I felt I needed to find out everything there was to know about a condition which initially impacted me greatly.
Consequently, I wanted to become involved with all things relating to my condition, something I felt would give me back my self-esteem, given the initial impact.
With this lived experience, therefore, I now have the opportunity and, indeed, want to contribute towards anything that makes patients' lives a little less challenging while having to deal with their condition.'
Ruth Williams
Often clinicians/managers misunderstand true patient experiences of services. Simple changes can make big differences to patients. As patients, we all offer very varied viewpoints but together can find solutions.
My work as a GP has helped me understand both how critical early diagnosis/treatment was and how, sadly, often it did not happen.
My general practice work, combined with my own experience of childhood and adult rheumatoid arthritis and vasculitis, has given me the unique perspective of both a patient and practitioner in rheumatology.
Kate Wilkins
After a long and difficult period, I was diagnosed with Rheumatoid Arthritis in 2005, at the age of 21.
Over the years, my disease has varied significantly, taking me down many different paths. At the time of my diagnosis, I knew very little about Rheumatoid Arthritis. Since then, I have spent the years researching, learning, and gaining a deeper understanding of the disease.
I want to use my lived experience with RA positively, to help inform better pathways for those who will come after me. NEIAA is one way in which I hope to do that.
Patient Experiences:
King's College London's patient expert panel run a blog detailing their own experiences with Rheumatoid Arthritis and the work they are doing to improve awareness and patient care. You can find it here: King's College London Musculoskeletal Expert Patient Blog.
If you have had a brilliant experience with your rheumatology team, we would love to hear from you! We are always looking to promote high standards of care and showcase the best of the NHS.
Please contact the NEIAA team on audit@rheumatology.org.uk
