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Press release: MINISTERS URGED TO SUPPORT MEASURES TO END 8.5 YEAR DELAY TO DIAGNOSIS FOR PEOPLE WITH INFLAMMATORY ARTHRITIS

Issued at 9am BST 16 September 2020

Ministers at the Department of Health will be asked to support measures that have been designed to radically improve the lives of people with axial SpA (AS), during an evening debate on Thursday 17 September.

Currently the average delay to diagnosis for this painful and progressive form of inflammatory arthritis is 8.5 years. The changes are backed by NASS, a charity that represents people living with axial SpA (AS) and is working to see the diagnosis delay reduced to just 12 months.

The evening debate will be hosted by Tom Randall MP on behalf of the All-Party Parliamentary Group (APPG) on Axial Spondyloarthritis. Tom Randall MP, lives with the condition.

Currently around 1 in 200 adults in the UK live with axial SpA (AS). The condition affects young people, with symptoms often starting in their early teens. Despite it being more common than multiple sclerosis and Parkinson’s combined – awareness of the condition is low.

If left untreated, axial SpA (AS) can result in significant and irreversible health issues such as spinal fusion, as well as damage to joints ligaments, tendons and mental health. There is no cure.

Research shows that among people diagnosed with AS:

  • 25% experience irreversible spinal fusion causing kyphosis and deformity
  • 26% will have uveitis which can cause blindness
  • 59% will have depression
  • An increased risk of fracture in general
  • 10-40% have to give up work and tend to retire 9.5 years earlier than average 

Currently the average delay to diagnosis of axial SpA (AS) is 8.5 years. NASS is campaigning for the introduction of measures to reduce this wait to just one year.

Ministers at the Department of Health and Social Care will be asked to support concrete steps that would enable thousands of people who are yet to be diagnosed with the condition to get the right care faster:

  1. increase public awareness of axial SpA with a campaign backed by public health bodies so that people consult a GP or primary care professional as soon as they notice symptoms;
  2. provide Clinical Commissioning Groups with a clear and simple inflammatory back pain pathway to ensure swift referrals directly to rheumatology and encourage increased awareness of the condition among GPs and other primary care professionals.

Commenting, Dr Dale Webb, Chief Executive of NASS said:

“We want to see a revolution in the way axial SpA is diagnosed and treated. Far too many young people wait years for a diagnosis and treatment. This inhibits normal life and risks permanent disabilities. Faster diagnosis, with the right pathways to care, would transform lives and save the economy money.

“The Government needs to act now so that the public know about the condition and can seek medical advice at the earliest opportunity and to ensure that primary care professionals identify and refer patients quickly to rheumatology for diagnosis. No-one should be locked out of life because of a delay in getting a diagnosis.”

Paul Curry, who lives with axial SpA, commented:

“I waited for more than 10 years to be diagnosed with axial SpA (AS). While I waited my spine fused and I gave up any hope of a career in professional sport. When I received a diagnosis, at last I knew the pain was out of my control and could be treated. This is why I’m supporting calls from NASS to end the delay to diagnosis and improve axial SpA (AS) care.”

Tom Randall MP, Dale Webb, CEO of NASS and Paul Curry are available for interview.

 

 

Notes to editors

  1. For more information or for interview please contact: Emma Heywood, freelance PR for NASS, on 020 3287 0015 / emma.heywood@ymail.com or Liz Marshall, Head of Marketing and Communications, NASS, on 07796697593. 
  1. About NASS (National Axial Spondyloarthritis Society)

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, stay in control of their lives and live well with the condition. We are driven to ensure that health professionals around the country deliver tailored and timely care to every patient, every time.

  • Axial spondyloarthritis (or axial SpA (AS)) is an umbrella term and it includes:
  • Ankylosing Spondylitis (AS) – where changes to the sacroiliac joints or the spine can be seen on x-ray.
  • Non-radiographic axial spondyloarthritis- where x-ray changes are not present but inflammation is visible on MRI or you have symptoms.