Rheumatoid Arthritis patients must not be left to struggle alone

Clare Jacklin

Chief Executive, National Rheumatoid Arthritis Society (NRAS)

NRAS has responded promptly and effectively to the needs of those with RA during the pandemic.

Rheumatoid Arthritis (RA) is an auto-immune condition requiring, in the majority of cases, immunosuppressant medications to control the disease progression. The COVID-19 pandemic therefore caused immense concern, worry and anxiety for the 400,000 UK adults living with RA.

People struggled to get clear information and support due to many rheumatology health professionals being redeployed to the front line. Thankfully, the National Rheumatoid Arthritis Society (NRAS) swiftly adapted and responded to fill this information and support vacuum.

COVID-19 and Rheumatoid Arthritis

During March, phone calls alone to the NRAS helpline increased by 600% with many more email and social media requests for help flooding in. It was obvious that many of the questions were very similar, so our first response was to harness digital technology to bring the latest information to the masses.

As CEO, I began running weekly live broadcasts on a Thursday evening, often being joined by leading health experts to answer people’s questions. As of early August, these 17 live broadcasts have been viewed over 126,000 times. All these live COVID-19 broadcasts are still available to watch back at www.nras.org.uk/nras-live-ask-your-questions and monthly broadcasts will continue from now on.

Those who haven’t got it… don’t get it.

As many people with RA were in complete lockdown and having to shield, the need for emotional support also was on the rise. NRAS launched a new service to respond to this called “Here for You”, offering peer support over the phone. People are able to self-refer online to be put in touch with someone else living with RA who understands what it’s like and can empathise (www.nras.org.uk/here-for-you). As one of our volunteers once said ‘those who haven’t got it, don’t get it!’

RheumZooms

NRAS also moved our in-person patient events to virtual, calling them RheumZooms. Our South Coast and Scotland RheumZooms have been incredibly successful in bringing people from specific regions together virtually to have the opportunity to hear from expert guest speakers but also interact in small breakout sessions within the online platform.

#OurMindsRApriority

The NRAS annual RA awareness week would normally have happened during June but was postponed to 7th – 13^th September with the adapted theme being that of ‘emotional and mental wellbeing’, which, for many people, has been severely impacted by this pandemic.

Like all charities, NRAS has been hit hard by the sudden and unprecedented drop in income due to fundraising events being cancelled. Responding to the increased demand – with dwindling resources – certainly presented us with challenges. That old saying though of ‘necessity being the mother of invention’ has never been more apt.

As well as the new, afore-mentioned, NRAS services, which sprung into life despite staff working from home and some being on furlough, NRAS also collaborated on the pandemic response with many external stakeholders including ARMA (Arthritis and Musculoskeletal Alliance); NHS; EULAR (European League Against Rheumatism); many researchers from across the globe working on studies relating to COVID-19 as well as responding to all four UK nations’ Government pandemic responses and guidelines.

As we head into winter flu season, NRAS is steeling itself to respond to what may be ahead and I would encourage anyone living with RA to prepare themselves by being fully informed of their risk level and what they can do to keep themselves and their families safe. The best way to do this is by connecting with and supporting the charity by joining www.nras.org.uk/join.

Other NRAS services are operating at full capacity and include free publications, helpline support, online referral schemes Right Start (for newly diagnosed people) and Living Better with RA (for those with established disease) both schemes offer tailored and personalised interventions.