To make sure we have the most up to date information and data on the experiences of people with axial SpA (AS) and the services that you access, from time to time we conduct our own research. We also commission our own research studies to help us achieve our aims as an organisation.
We are so grateful to all of our members and followers for their contributions to these studies, helping to build a better future for people with axial SpA (AS).
Axial Spondyloarthritis Services in England: A National Inquiry
NASS undertook an enquiry on behalf of the All Party Parliamentary Group for Axial Spondyloarthritis.
The findings from the APPG inquiry, based on results from Freedom of Information requests answered by 191 Clinical Commissioning Groups (CCGs) and 99 provider Trusts undertaken in 2019, revealed that only 21% have a specific inflammatory back pain pathway in place – without one, rapid referral to specialist care for those with signs and symptoms of axial SpA (AS) is unlikely.
Axial SpA (AS) can have a hugely detrimental impact on a person’s well-being and is associated with significantly increased risk of poor mental health, even when compared with other musculoskeletal conditions. Despite this, only 25% of CCGs provide patients with direct access to psychological services. A fifth of areas in England still do not offer specialist physiotherapy for those with the condition, despite these services being critical in helping individuals manage flare-ups and the chronic stiffness and joint pain that is synonymous with the condition.
Minimum Service Specifications for axial SpA
These recommendations are a set of minimum service specifications for axial SpA, which can be adopted by rheumatology departments to ensure that patients are able to receive the care they need in the event of future Covid-19 outbreaks.
The recommendations were developed with input from leading national axial SpA (AS) experts and are endorsed by the National Axial Spondylarthritis Society (NASS) and the British Society for Spondyloarthritis (BRITSpA). The measures can be adopted without the need for significant additional investment or disruptive service reorganisation.
Summary of Minimum Service Specifications
- Patients should be accurately coded in local databases to ensure those at risk can be identified.
- Some face to face capacity should be maintained for new diagnosis and those in flare.
- Core services should be able to be delivered digitally and health professionals should have adequate training to be able to do this.
- Clinical supervision is vital for junior staff in the event of senior staff redeployment.
- Provisions should be in place for those not able to access services remotely.
- Patients should feel supported to self-manage as well as have access to uninterrupted physiotherapy.
Recommendations for NHS System-Leaders
- National agencies (including NHS Digital) with responsibility for overseeing the development of axial SpA (AS) patient coding should work to ensure that existing diagnosis and risk coding is fit for purpose and well-understood by those delivering services.
- National agencies should encourage commissioners to assess the resilience of local axial SpA (AS) services and adopt minimum service specifications to support the continued provision of core elements in the event of future outbreaks.
- Stakeholders should ensure that clear, up-to-date shielding guidance is made available for those with axial SpA (AS), tailored to patient cohorts depending on individual levels of risk.
COVID-19 in axial spondyloarthritis care provision: helping to straighten the long and winding road
Published in The Lancet Rheumatology, this 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).
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
We have three studies currently underway or inviting tenders that will be published late in 2021 and in 2022, on the topics of emotional wellbeing, the economic cost of the delay to diagnosis and patient values.