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Policy makers and healthcare professional urged to work together to improve care for people with axial SpA (AS) during the pandemic and beyond.

The Covid-19 pandemic has resulted in significant disruption for people living with axial SpA (AS) and the healthcare teams providing the vital NHS services they rely on, concludes a new article in the published in The Lancet Rheumatology today.

The article shines a light on the difficulties that people living with this painful form of inflammatory arthritis have had accessing vital services, as well as highlighting the innovative steps that healthcare teams have taken to offer people support during the crisis.

It calls for greater collaboration between policy makers and health care providers to safeguard essential care for people with axial SpA (AS).

Axial SpA (AS) is a painful and progressive form of inflammatory arthritis, which affects around 1 in 200 adults in the UK. The condition, which can affect people from their late-teens onwards, often causes chronic back-pain, extreme tiredness (fatigue) and serious joint and ligament damage. The disease is progressive and can lead to irreversible spinal fusion.

The article draws on the results of a survey with 873 people living with axial SpA (AS). According to the survey 1 in 4 people were unable to access vital NHS services during the pandemic and just under five out of 10 said that their physical and mental health deteriorated during lockdown.

It highlights results from a survey among healthcare professionals showed the extent of the disruption to NHS axial SpA (AS) services. According to the survey:

  • there was a 31% reduction in the number of sites providing axial SpA (AS) services during the first national lockdown
  • 44% of services were not able to provide face to face care for patients whose symptoms had worsened, because they were experiencing a flare
  • 38% of services could not maintain specialist physiotherapy support

NHS rheumatology services have responded to the challenges of the pandemic by offering innovative digital appointments, with 47% of services providing virtual flare management to help people who were experiencing a spike in painful symptoms and 47% providing remote identification and diagnosis. However, whether individuals were able to access these services was entirely dependent on where people lived, leading to a postcode lottery of care.

This research also highlights the need for liaison with national agencies including NHS Digital to ensure that existing coding of patient diagnosis and treatment is fit for purpose and well-understood by those delivering services not only for axial SpA (AS) but every health condition.

To protect NHS axial SpA (AS) services during future waves of the Covid-19 pandemic and beyond, there was widespread support among healthcare professionals for a minimum service specification. This has now been published by the All-Party Parliamentary Group for axial SpA (AS) and NASS.

Lead author for the article, Dr Helena Marzo Ortega, Chair of BRITSpA said:

“The research by NASS highlighted that NHS staff are struggling to keep their services afloat with team members redeployed and repurposing of their departments. Now is the time for policy makers and healthcare professionals to work together to safeguard essentials services and avoid storing-up problems that result in more pressure for an already over stretched system once the pandemic ends.”

Dr Dale Webb, Chief Executive of NASS said:

“People have been hit hard and don’t know where to turn. Many can’t see their rheumatologist; physiotherapy appointments have been cancelled and people are unable to access vital hydrotherapy session that relieve their symptoms. In the meantime, they are left feeling isolated, anxious about how they are going to manage their condition and all while their pain is getting worse. It’s time to act now to ensure people get the support they need not just during the pandemic but also beyond.”

Click here to read the full article.

Notes for editors

  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.

  1. 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.

 

  1. 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.