Category: Patients

LUPUS Transition to adult care booklet

document coverLupus UK Youth is pleased to launch a new booklet to support and prepare young people with lupus during the transition from paediatrics to adult services. It is based on the T-KASH (Transition Knowledge and Skills in Healthcare) model developed by young people with lived experience from Alström Syndrome UK, and includes tips and a workbook format to help young people think through their individual transition journey.

As lupus is a life-long condition, effective transition from paediatric to adult services is a vital part of healthcare for young people with lupus.…

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NRAS Live – MensRHEUM

Please join NRAS for the next NRAS Live event on Wednesday 27th November, 7pm. This month, it’s Men’s Health Awareness Month and in celebration, NRAS will be highlighting the importance of men’s health, especially for those living with rheumatoid arthritis.

NRAS COO, Stuart Munday will be joined by musician and composer, Krystian Lamb, who lives with RA. Krystian will be sharing his story so far, from diagnosis to now managing his condition and releasing his project, Introspection, which was inspired by his RA journey.…

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Relationships Matter booklet

NRAS is pleased to announce the launch of their new booklet, Relationships Matter, a guide to relationships for people with rheumatoid arthritis (RA) and adult juvenile idiopathic arthritis (AJIA).

A diagnosis of RA or JIA effects every aspect of a person’s life and the lives of those closest to them, including any current or future partner. In this booklet, we discuss a range of topics, including the impact of these conditions on dating, sex and maintaining healthy long-term relationships.

The booklet is inclusive of all sexualities and includes information and tips, as well as anecdotes from people living with these conditions.…

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Cornwall Arthritis Trust’s Freedom to Move

Freedom to Move – an opportunity to experience education, movement and creativity

Cornwall Arthritis Trust, working in partnership with Artconnexion, have brought communities together to exchange knowledge about living with Arthritis and MSK conditions, as well as emphasising self-management, positive thinking, movement, creativity, and the importance of connecting.

The programme helps people discover what happens when you mix Creativity, Education and Movement – it’s a CEMical reaction of delight.

The programme was positively received at Miners Court Day Care centre in Reduth, Cornwall.…

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How to prepare for joint replacement surgery

Webinar – Preparing for Joint Replacement Surgery and Recovery
Thursday 24th October 2024, 1.00pm

Arthritis Action’s next webinar will discuss how to prepare for joint replacement surgery, what you can expect on the day, and how best to manage recovery.

Arthritis Action’s Medical Advisor, Honorary Consultant Rheumatologist Dr Wendy Holden will speak to Arthritis Action Volunteer Rebecca Sadri about her experience of arthritis, and how she prepared for, and recovered from her hip replacement surgery. The webinar will include a Q&A session.…

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NRAS Live: Introduction to The Wren Project

NRAS LiveJoin NRAS on Wednesday 25th September at 7pm for a discussion on how NRAS and The Wren Project support those with autoimmune conditions.

The Wren Project is a fantastic initiative that offers listening support to people living with autoimmune diseases throughout the UK.

The discussion will be hosted by Sarah Watford, NRAS Support Service Manager and Amy Allen, Information and Support Coordinator – both of whom are part of the NRAS Information & Support team. The team will be joined by Kate Middleton (Wren Project Chief Executive) and a Wren volunteer, to talk about how they support people living with RA and other autoimmune diseases.…

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New NHS Resource for adults with chronic primary pain

Decision-making documentNHS England has published a new decision support tool – Making decisions to help you live well with chronic primary pain.

The resource is intended as a decision aid for people aged 16 years and over with chronic primary pain to help you think about what options you might like to consider to help you live well with pain.

You can find the decision support tool here.

NRAS Live: Dental Care, Oral Health & RA

If you have rheumatoid arthritis and think that oral health shouldn’t be top of your list – you may be surprised! Findings from recent studies suggest that there are significant links between oral health and those living with RA and other common co-morbidities such as heart disease and diabetes.

In this NRAS Live chat, Ailsa will be joined by Iain Chapple, Professor of Periodontology at University of Birmingham and Maddy Roberts, our Families and Young Peoples Service Manager from the JIA-at-NRAS team.…

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People’s Experiences of Diagnosis

National Voices has published a new report, People’s experiences of diagnosis, which brings together insights from people with lived experience and members on the entire process of diagnosis – from trying to get an appointment for a diagnostic referral, to undergoing tests, and experiences post-diagnosis.

The report covers the themes of challenges in diagnosis, inequalities in diagnosis, and new innovation in diagnosis, before concluding with nine recommendations for improving patient experience of diagnosis.

report coverThese nine recommendations include: 

  • Adjustments and adaptations to enable access 
  • Provide better support while waiting 
  • Listen to the patient 
  • Better communication around diagnosis 
  • Make sure people have a plan 
  • Provide access to support groups 
  • Collect better data to understand the driver of diagnostic health inequalities, and act on it rapidly 
  • Upskill, coordinate and ultimately increase the workforce 
  • Have health equity embedded into new innovations the start 

You can read the full report here (pcdn.co)…

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