Inflammatory arthritis patients face long delays for treatment, audit reveals

Published: 10 Oct 2019

A leading rheumatoid arthritis charity is warning that treatment delays for patients with suspected early inflammatory arthritis could result in unnecessary harm. National Rheumatoid Arthritis Society (NRAS) said that thousands of people who potentially have the condition aren’t getting treatment in line with NICE guidelines and Quality Standards, which risks life-long disabilities.

The charity was responding to the release of the National Early Inflammatory Arthritis Audit, which is conducted by the British Society for Rheumatology. The audit has recorded data from 98% of trusts and health boards in England and Wales charting the progress of over 20,600 patients.

Key findings include:

  • Only 4 in 10 patients met the 3-day standard for referral from their GP
  • Only 38% referred to a rheumatology unit were seen within the 3-week guidelines
  • The average wait for an appointment was 28 days

The audit data also shows considerable variation across England and Wales. A third of trusts and health boards (51 out of 146) have been identified as ‘outliers’, as they are performing less well than the rest.

As a result of the findings, the charity is calling for improved awareness in primary care of the importance of adhering to the NICE Quality Standard of swift referral to a specialist if inflammatory arthritis is suspected. In 2009 it was reported by the National Audit Office that most people with inflammatory arthritis were visiting their GP on average 4 times, often over many many months, before referral to see a specialist. It is incredibly disappointing to see that 10 years on, not a lot has changed. The main reasons for these delays appear to be:

 1) lack of public awareness of the key symptoms and importance of early diagnosis and treatment. If the general public were more aware of the red flags to look out for and the seriousness of inflammatory arthritis, they may be more demanding in pushing for a referral to a specialist.

2) While GPs are incredibly overstretched and time poor, ensuring that other primary care practitioners are trained to identify the red flags of IA with the ability to fast track suspected IA cases to specialist care could make a significant difference.

3) The staff shortages in rheumatology units need to be addressed urgently as many hospitals are falling short of the NICE recommendations for patient access to a full, specialist,  multi-disciplinary team.

4) With all trusts struggling with workforce issues, surely it is time to introduce more innovative and modern ways in which people can access their rheumatology team, eg. text, email, facetime, video. This way a proportion of problems could be dealt with without bringing patients into hospital, releasing time for more urgent and complex patients who need to be seen face to face, and enabling people to access help rapidly without having to take time off work. With the majority of people diagnosed when of working age, rapid access when needed, without taking half a day off work would be very welcome.

Clare Jacklin, CEO of NRAS said:

It’s clear that despite the combined efforts of the rheumatology community that public awareness of the seriousness of Inflammatory Autoimmune conditions, RA being one of the most common, is still not widespread enough. Our efforts in this regard must continue. NHS workforce issues are also affecting virtually every rheumatology unit. Increasing administrative support would free up specialist nurses’ time to see more patients and deal with urgent access need. Is there perhaps also an opportunity to increase the competencies of primary care physios, practice nurses and pharmacists to include recognition of the red flags of RA/IA which might help reduce delays in referral to specialist care?

Referrals to the NRAS Right Start Service for people newly diagnosed RA are increasing month on month which provides education, peer support and access to self-management resources, so we are playing our part in helping units achieve adherence to NICE Quality Standard 4 and would welcome the opportunity to extend this service to more hospitals who may be finding it difficult to meet this particular standard.”

Ailsa Bosworth, National Patient Champion for NRAS said:

“I have lived with seronegative RA for nearly 40 years and have had 20 operations so far. Much of this damage could have been prevented if I had sought help at an earlier stage and also been treated effectively much earlier. Things were different 40 years ago of course, but the lessons are clear. We must refer rapidly and treat effectively and early to prevent damage and disability.”

ENDS

Notes to editors:

For further information, interviews or to speak to a senior representative of NRAS, contact enquiries@nras.org.uk or call 01628 823524. www.nras.org.uk

The data from the Early Inflammatory Arthritis Audit can be found on the British Society of Rheumatology’s website at www.rheumatology.org.uk.

The National Rheumatoid Arthritis Society (NRAS) is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). Due to its targeted focus on RA and JIA, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them. Their vision is to support all with RA or JIA to live life to the full, with an underpinning mission to:

  • support everyone living with the impact of RA or JIA at the start and every step of their journey
  • inform – be their first choice for reliable information, and
  • empower all to have a voice and take control of their RA or JIA