Category: Patients

The new NRAS Young Persons Project Co-Ordinator

by Debbie Wilson, NRAS

I am the new Young Persons Project Co-Ordinator at NRAS. I come to this role with a very personal experience of JIA. I have had JIA nearly all my life and a few years ago my daughter was diagnosed with it too. Thankfully, due to medical advances, the disease can be easier to manage. Unfortunately, some things have not changed: mainly the lack of understanding and awareness of JIA. There is still the stigma of having JIA and I was quite shocked that my daughter got the same comments I used to get, such as: “my granny has that”; “that’s an old person’s disease”; “you are too young to get arthritis.”…

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Chronic Pain and the pandemic

Recently, Pain Alliance Europe conducted a 6-week short survey on Covid-19 and chronic pain in twelve languages to see the current situation of chronic pain patients in Europe.

The survey showed initial results that during the pandemic 15% of people worried and feared taking prescribed medication. There was also impact on self-management plans – of those people who had a plan, 29% indicate they are not able to continue with their care plan. From all countries, the respondents in the UK reported the highest impact of pain interfering with their normal functionality.…

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Making decisions about shielding

Making decisions about shielding – based on guidance issued 22 September for England

This document is based on guidance for England. The principles of assessing your own risk and the risk of different activities is the same wherever you live. If you live in Wales, Scotland or Northern Ireland, check your national guidance and advice for people who are clinically extremely vulnerable – see links below.

Just over 2 million people in England were advised earlier this year that they needed to shield because they are extremely vulnerable to the COVID-19 virus.…

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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.…

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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.…

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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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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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