A new programme that aims to end the 8.5-year delay to diagnosis for people living with axial Spondyloarthritis (axial SpA) will be launched on 15 July 2020.
The programme will be the first in the world to set a Gold Standard to reduce the average time to diagnosis in axial SpA (AS) to one year. The consultation process, which is phase one of the programme, will be launched by the All-Party Parliamentary Group on axial Spondyloarthritis.
Axial SpA is a painful and progressive form of inflammatory arthritis. It is a condition that affects young people. Symptoms often start in late teens to early twenties, with the average age of onset being 24 and diagnosis at around the age of 32. There are currently 220,000 people in the UK living with the condition.
People pay a heavy price because of the time it takes to diagnose the condition. If left untreated, it can result in significant and irreversible health issues such as spinal fusion, as well as damage to joints, ligaments, and tendons. Research also shows that delayed diagnosis has a significant impact on the ability of young people to establish careers, socialise with their friends and form relationships.
The Gold Standard Time to Diagnosis programme is led by the National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust and is funded by UCB.
The programme sets out a pathway that tackles the four most common causes of a delay in diagnosis for axial SpA (AS):
- Lack of public awareness of the condition, meaning a person with persistent back pain simply thinks it is a sport or work-related injury or they have sprained their back in some other way. The programme will address this with public awareness campaigns and online tools to help people identify relevant symptoms.
- GPs and other primary care professionals not necessarily considering axial SpA (AS) as a differential diagnosis. The programme will address this by creating primary care clinical champions in axial SpA (AS) who will help their peers recognise the condition faster and make a referral to a rheumatologist.
- GPs recognising that someone has serious symptoms but not considering rheumatology as a referral pathway. The programme will look at ways to introduce a faster pathway for a direct referral to rheumatology.
- Rheumatologists and radiologists requiring further information on best imaging for and detection of axial SpA (AS). The programme will promote education, the promotion of imaging protocols and the take up of innovative virtual imaging services.
Commenting Dr Dale Webb, Chief Executive of NASS said:
“While people wait for a diagnosis, many are robbed of the chance to socialise, establish careers, form relationships, and start families. We want to make sure no one is locked out of life because of the time it takes to get an axial SpA (AS) diagnosis. Ultimately, a faster diagnosis will enable people to get the right care earlier and start living well with the condition sooner. This is good for individuals, good for the NHS and good for the economy.”
Prof. Karl Gaffney, Consultant Rheumatologist, Norfolk & Norwich NHS Foundation Trust, commented:
“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.”
Dr. Raj Sengupta, Consultant Rheumatologist, RUH Bath NHS Foundation Trust, said:
“There remains an unacceptable delay in the diagnosis of axial SpA worldwide. As clinicians diagnosing and managing this condition, we have an important part to play in reducing the delay to diagnosis. With NASS and others, I am looking forward to playing my part to drive significant change to achieve our aim of ensuring every person with axial SpA receives a diagnosis within one year.”
The consultation with healthcare professionals and people living with axial SpA (AS) will be launched at the All-Party Parliamentary Group on axial Spondyloarthritis on 15th July 2020. The Gold Standard will be launched in December 2020 and rolled out from 2021 onwards.
Case studies and the programme team are available for interview.
For more information or for interview please contact: Liz Marshall, Interim Head of Marketing and Communications, NASS on 07796697593 or LizMarshall@nass.co.uk
Notes for editors
- About NASS.
NASS is the only charity in the UK dedicated to transforming axial SpA (AS) care in the UK.
For over 40 years we’ve been providing specialist support, advice and the most up-to-date information. We aim to empower everyone with axial spondyloarthritis (axial SpA) including ankylosing spondylitis (AS) to manage their treatment and to stay in control of their lives. We are driven to ensure that health professionals around the country deliver tailored and timely care to every patient, every time.
- About UCB
UCB (www.ucbpharma.co.uk ) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases.
The Gold Standard Time to Diagnosis programme is funded by UCB as sponsor of the project. UCB is a non-voting member of the project board and has no editorial control over the content or output of the programme.
- About Gold Standard Time to Diagnosis
Gold Standard Time to Diagnosis is led by National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust. The programme is funded by UCB.