Category: Patients

Video: the Right Start Service for RA patients

NRAS has a new video on the benefits of the Right Start Service for patients newly or recently diagnosed with rheumatoid arthritis.

New2RA Right Start is a service launched by the National Rheumatoid Arthritis Society (NRAS) at the BSR 2019 congress and to which many rheumatology services are referring their patients. Right Start 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.…

Read more of this article

Survey on the effects of COVID-19 and lockdown

Around half of those with arthritis report increased pain during the pandemic
With over half finding it more difficult to access healthcare

During the COVID-19 pandemic, 42% of people living with arthritis reported that their pain has increased [1] according to a survey by UK Charity Arthritis Action looking at the effects of COVID-19 and lockdown on the daily lives of people with arthritis. Considering there are over 10 million people living with some form of arthritis in the UK [i] this would equate to over 4 million people experiencing increased arthritis pain during the ongoing pandemic.…

Read more of this article

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.…

Read more of this article

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.…

Read more of this article

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.…

Read more of this article

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.…

Read more of this article

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.…

Read more of this article

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.…

Read more of this article