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‘It will make such a difference’ - Patients welcome ‘gold standard’ to reduce 8.5 year diagnosis time

PUBLISHED: 06:30 07 August 2020 | UPDATED: 06:52 07 August 2020

Keiron Steele has praised the steps taken to reduce the diagnosis rate of Axial Spondyloarthritis. Picture: Keiron Steele

Keiron Steele has praised the steps taken to reduce the diagnosis rate of Axial Spondyloarthritis. Picture: Keiron Steele

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Norfolk patients suffering from inflammatory arthritis could benefit from a new programme aiming to end the eight and a half year delay to diagnosis

Carol Weyman took part in a trial at NNUH. Photo: NNUHCarol Weyman took part in a trial at NNUH. Photo: NNUH

It will be the first in the world to set a “gold standard” with the aim to diagnose patients with axial Spondyloarthritis (axial SpA) in just 12 months.

Axial SpA is a form of inflammatory arthritis that can start as early as late teens or 20s and affects 220,000 people in the UK. If left untreated, it can result in significant and irreversible health issues.

The newly announced treatment pathway targets four areas which cause delay including the lack of public awareness of the condition and increasing education around diagnosing axial SpA.

Norfolk patients Keiron Steele and Carol Weyman, who waited a number of years for their diagnosis, have welcomed the news which they say will change the lives of those with the condition tremendously.

Professor Karl Gaffney, consultant rheumatologist at the Norfolk and Norwich University Hospital. Picture: NNUHProfessor Karl Gaffney, consultant rheumatologist at the Norfolk and Norwich University Hospital. Picture: NNUH

Mr Steele, 34, a staff nurse at the NNUH, was 25 when he first began experiencing pain and was diagnosed five years later after requiring a specialist blood test to look for a gene associated with the condition.

Mr Steele said: ”If you are under pressure or stressed it can induce flares. My condition went from 0 to 60 in a matter of minutes from me being able to function absolutely perfectly to one day not able to use one side of my body. At its worst I wasn’t sleeping, I went 72 hours with no sleep which started affecting my work.

“I’m feeling physically better than ever right now. This treatment is allowing me to do all things. One of the most difficult things about axial SpA is trying to get people to believe you. It will improve their lives tremendously.”

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Carol Weyman, from Holt, spent the best part of 20 years with pain in her back, working a full time job and raising her family.

After many trips to the doctors, her symptoms were picked up at an eye clinic at the NNUH where she was put on a trial in 2017 and began receiving treatment.

The 55-year-old said: “It has relieved 90pc of my symptoms. It has made such a difference to my life. To carry on for over 20 years backwards and forwards. I did get to a point in 2014/15 where I got to the point I was not able to work, what’s the point of going on. I had these symptoms and I was being dismissed.”

The programme was launched in July by the National Axial Spondyloarthritis Society (NASS) which has worked with Professor Karl Gaffney, consultant rheumatologist at the Norfolk and Norwich University Hospital.

Professor Karl Gaffney, consultant rheumatologist at the Norfolk and Norwich University Hospital.

Professor Gaffney said around 60pc of patients experience diagnosis because of the condition, with a third retiring early.

He said; “That [one year diagnosis] is an aspiration, aim high.

“We have the treatment which is revolutionising patients lives.

“So many patients suffer due to this diagnosis. They have suffered severe depression, its affected their work as they have to have time off, they lose their job. There is also lots of personal impacts on personal life, social life.

“This exciting programme offers a fantastic opportunity to improve the lives of people who are living with chronic pain but don’t yet know that they have axial SpA. We now have a unique framework to harness support from the wider healthcare community to reduce the unacceptable delay to diagnosis so that patients gain access to the range of therapies which can transform their lives.”


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