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WORLD ARTHRITIS DAY – SURVEY REVEALS DETERIORATING LIVES AS PEOPLE WITH PAINFUL INFLAMMATORY ARTHRITIS LEFT IN LIMBO DURING PANDEMIC

On World Arthritis Day (12 October 2020) National Axial Spondyloarthritis Society (NASS) is releasing new research suggesting tens of thousands of people with a painful, progressive form of inflammatory arthritis are facing a decline in their general health and mental health because they are not getting access to essential healthcare during the pandemic.

 

Axial Spondyloarthritis (or axial SpA) is an incurable condition affecting one in 200 people in the UK – more than Multiple Sclerosis and Parkinson’s combined – and symptoms usually starts when people are in their late teens or early twenties. Face-to-face access to healthcare professionals is essential for people who are newly diagnosed, going through diagnosis, or when symptoms flare up, causing often debilitating joint pain.

 

Key findings from the NASS survey reveal:

  • A postcode lottery resulting in unacceptable numbers struggling to access NHS services – 1 in 4 had had no access at all since lockdown began.
  • Almost half (44%) of secondary health care teams were not providing face-to-face care, such as physiotherapy or an appointment to see a rheumatologist, for people experiencing a painful flare up of symptoms. A third of healthcare teams had not provided telephone or digital access.
  • 4 in 10 respondents had been unable to continue with specialist physiotherapy, one of the main ways to manage this condition.
  • Nearly half reported a detrimental impact on their lives, with a deterioration in their general and mental health since the pandemic began.
  • Half of healthcare trusts were not currently able to provide a route to diagnosis and treatment.

 

NASS is calling on the Government to step in to ensure that healthcare commissioners and providers maintain a minimum standard of services for patients with axial SpA, providing face-to-face care for the most urgent cases, as well as telephone and digital access where clinics have reduced capacity and social distancing. The charity is also launching a social media campaign #AccessforAS to encourage people with axial SpA to write to their MPs and ask that they support this call.

 

Dr Dale Webb, Chief Executive of NASS said:

“The disruption Covid-19 has caused to NHS services is detrimentally affecting the lives of too many people with axial SpA. Getting access to essential care such as physiotherapy, or a life-changing diagnosis, shouldn’t depend on where you live. Ministers need to end this postcode lottery and ensure that Health Commissioners maintain a minimum standard for services during the pandemic and beyond. In particular, there must be provision for new patients and those in flare to be seen face-to-face.

“What really sounds the alarm is that nearly half of the respondents said their mental health had deteriorated since the pandemic began. People with axial SpA (AS) are already much more likely to experience mental health issues like depression compared to others with musculoskeletal conditions, so it’s crucial they get the care they need as we go into a potential second wave.”

 

Emma Wardrope, who lives with axial SpA (AS), commented

“I’ve been left in limbo since lockdown. My April appointment to see the rheumatologist was cancelled and I’ve heard nothing since, even though they said they would be in touch. I should be having regular monitoring and worry something will be missed. I was also asked to shield, affecting my mental health and family life, then told weeks later this was an error.”

 

The survey findings come on top of an unacceptable delay to diagnosis of 8.5 years for people with axial SpA (AS), which predates Covid-19, and by which time irreversible damage to the spine may have occurred.

 

 

Notes to editors

1. Case studies are available. 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.

 

2. 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.

 

3. To improve understanding of the impact of Covid-19 on services for and the lives of people with axial SpA, the All Party Parliamentary Group on Axial SpA and NASS conducted a survey from May to July 2020 which generated 838 patient and 80 clinic responses, representing the majority of services in England, Scotland and Wales.

 

4. 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.

 

5. 59% of people with Axial SpA report mental health problems compared to 25% of people with musculoskeletal conditions overall.