Patients | ARMA

Guest blog: How to postpone becoming a bionic woman

Better communications with symptomatic hypermobility patients leads to better outcomes

By Jane Green – advocate ex Assist. Headteacher, BSc (HONS) Psych., PGCE QTS, Adv.Dip.Ed.(CD), MA Ed. (Leadership and Management), Social Care Institute for Excellence Trustee and on the co-production steering board for four years

For anyone on the long journey to diagnosis of Ehlers-Danlos syndromes (EDS) (previously Joint Hypermobility syndrome (JHS)) or the closely related Hypermobility Spectrum Disorders (HSD), the knowledge, practice and understanding of appropriate musculoskeletal issues from practitioners is hugely beneficial.…

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NRAS Work survey

In July and August 2020, NRAS ran a survey asking about the impact of the Covid-19 lockdown on the working lives of people living with rheumatoid arthritis or another form of inflammatory arthritis.

The survey received 348 responses and a short report will be published next month. The overall picture is a concerning one: people reported that their career opportunities, in-work support and the understanding they experienced from colleagues and employers dropped slightly during lockdown. Asked about their expectations for the future, many expected this trend to get worse.…

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Physio in Focus online event

On 7 November 2020, NASS will be hosting a new event for any affected by axial SpA (AS).

Physio in Focus will be run entirely by physiotherapists and in partnership with AStretch. Please do share this with your patients. We also welcome attendance from physiotherapists who would like to engage further with NASS and AStretch.

Pandemic Patient Experience

The Patients Association has published a report of patient experiences of Covid-19. The results show the massive toll on all patients of the coronavirus pandemic and the emergency measures taken in response to it. Some patients reported good ongoing care, and were impressed by the way their local communities came together to support them.

The report contains recommendations for the next phase of the emergency response, and also a call for the health and care system to be built back better after the pandemic: the current emergency footing cannot be the basis for the ongoing relationship between patients and the NHS.…

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National Patient Champion’s views on ending shielding

After more than four months shielding, NRAS founder and National Patient Champion Ailsa Bosworth MBE has shared her thoughts on shielding coming to an end.

You can watch Ailsa’s video of her personal reflections on the lockdown experience and coming out of shielding on the NRAS YouTube channel.

Guest blog: Dancing on the Rusty Brown Carpet

by Victoria Wells, a personal reflection about a new play with a theme of dancing for health – how a work of theatrical art relates to my experience of joint replacement surgery, pre-operative rehab, post-op rehabilitation and a lifetime of dancing.

On 3 October 2020, a play by Fiona Hamilton will be screened for the first time.
My experience contributed to one of its main characters.

As a child I enjoyed dancing and getting lost in the rhythm. I was born with hip dysplasia that was not diagnosed until mid-childhood and, as a result, I walked with constant pain.…

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HMSA – Coronavirus Shielding: Advice for re-joining the world

This blog post from the HMSA’s Occupational Therapist, Jo Southall, provides an overview of strategies to deal with the not entirely comfortable idea of returning to an uncertain world when you’ve been shielding for some time, and is packed with ideas about how to ease that transition.

Jo is responsible for team wellbeing at the HMSA and also runs a monthly #HMSALiveOT show from the HMSA Facebook page at 7pm on the third Thursday of each month, taking your Occupational Therapy questions live or in advance.…

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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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