Patients | ARMA

Gold Standard Time to Diagnosis

Help end the 8.5-year delay in the diagnosis of axial SpA (AS)

A new programme that aims to end the 8.5-year delay to diagnosis for people living with axial Spondyloarthritis (axial SpA) was launched on 15 July 2020.

Gold Standard Time to Diagnosis will set the world’s first Gold Standard to reduce the average time to diagnosis in axial SpA (AS) to just one year. The consultation process, which is phase one of the programme, was launched at the All-Party Parliamentary Group on axial Spondyloarthritis.…

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Versus Arthritis launches ‘Impossible to Ignore’ campaign

People with arthritis can’t ignore their pain. Let’s make sure the Government doesn’t, either.

This is why Versus Arthritis has launched the Impossible to Ignore campaign, calling on politicians and policy-makers to address the needs of people with arthritis. Now, your support is needed to demand change.

For many people, lockdown has made living with arthritis even harder. With appointments, treatments and joint replacement surgery delayed, people with arthritis face worsening pain and impacts to their physical and mental health that are impossible to ignore. …

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What are the experiences of ethnic minorities with pain management?

An invitation to participate in research: We want to know your experiences of living with pain in London

Recent findings have shown that chronic pain affects up to 50% of the UK population ^[1]. Of this, Black adults have been found to have higher levels of “high-impact” pain in comparison to their White counterparts ^[2]. This disparity in the incidence of pain is also reflected in the contributory factors to pain. Researchers ^[1] have found many factors that are associated with the development of chronic pain including comorbidity, mental health and employment status – factors that are more prevalent in ethnic minorities ^[3] ^[4].…

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Moving Medicine COVID-19 Recovery Resources

Moving Medicine, an FSEM (UK) initiative, has published a series of resources designed to help those who are recovering from COVID-19.

The COVID 19 infection frequently leaves people feeling tired, weak, short of breath performing simple tasks, lacking in motivation, anxious or even feeling depressed. These symptoms can go on for a lot longer than expected and it can feel like you’ll never get back to normal.

To assist those recovering, Moving Medicine has produced resources that help people take control and start building their body back to normal.…

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BOA – People waiting for orthopaedic surgery

A British Orthopaedic Association message to people waiting for joint replacement and other orthopaedic surgery

Growing waiting lists are affecting all planned surgery, but particularly orthopaedics which has the largest overall waiting list of any individual specialty. The BOA’s statement [published 26 June 2020] is a response to the concern, frustration and a lack of information available to people waiting for surgery. It explains how services can restart, gives advice on what to do, and provides resources to help people while they wait, as well as some FAQs.…

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Good Boost and NRAS

NRAS has been working with the social enterprise Good Boost, who champion the phrase “Move More, Have Fun, Feel Better.” Their mission is to create more affordable and accessible options for MSK community health services, and they use technology at the forefront for change.

With growing numbers of physiotherapy and joint surgery appointments postponed due to Covid-19, their team of physiotherapists, osteopaths, MSK researchers, software engineers and AI specialists recognised the need for solutions providing personalised support at home.…

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Upcoming NASS self-management sessions

The next NASS Facebook Live sessions:

Thursday 23 February 2023, 18.00: High-Intensity Interval Training session with Josh Poole, Senior Physiotherapist; and
Wednesday, 1 March, 13.00: Talking to friends and family about your axial SpA with Zoë Clark, NASS Senior Self-management Programme Officer.

To watch live, visit the NASS Facebook page at the time of the live session. (If you can’t see the video, refresh your page.)

The NASS Facebook Live sessions have been running for about three years now, helping people to manage their axial SpA (AS) in unprecedented times and beyond.…

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Reumavid study

Reumavid is a questionnaire investigating the consequences of the covid-19 pandemic on people living with rheumatic conditions in United Kingdom.

The survey is aimed at people living with rheumatic diseases who are experiencing confinement due to COVID-19.

Its aim is to describe the consequences of the pandemic on the evolution of the disease, support services, healthcare, the quality of life and the emotional well-being of people living with rheumatic diseases.

This study is promoted by National Axial Spondyloarthritis Society (NASS), National Rheumatoid Arthritis Society (NRAS), and Arthritis Action, and conducted by the Health & Territory Research (HTR) of the University of Seville, with the support of Novartis Pharma AG.…

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Global rheumatology patient survey – Covid 19

Pain UK would like to alert you to the work of the Covid-19 Global Rheumatology Alliance, an organisation established to “collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians and other relevant groups to improve the care of patients with rheumatic disease.”

Rheumatology patients are invited to complete a patient survey, whether or not they have been diagnosed with COVID-19. A worldwide consortium of doctors, scientists and patient groups are seeking your views on the current situation. Tell them how it is for you via this link.

NRAS New2RA and Chatbot

New2RA Right Start

The NRAS New2RA Right Start service supports people newly diagnosed with Rheumatoid Arthritis to understand their diagnosis and how it is likely to affect them. Getting the right, supportive start can help people to make adjustments to their behaviour, lifestyle and health beliefs and understand why self-management is essential, and learn how to make those important first steps to managing their disease effectively.

Further information can be accessed on the NRAS New2RA Right Start service page. This service is essential during this time for those newly diagnosed during the COVID-19 crisis, offering extra support when appointments are being delayed.…

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