Category: Patients

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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Creating your AS flare toolkit

Most people with axial SpA tend to have times of flare and times when their symptoms are more manageable or settled. A flare can include an increase in pain and joint stiffness, either local or generally.

online meetingFind tools to help you to feel more in control and prepare for axial SpA flares with the NASS axial SpA online peer support meeting on 4 June 2024 at 6pm.

Join this friendly online meeting to:

  • Find tools to help you prepare for flares and create your flare toolkit
  • Get advice to reduce the impact a flare has on you
  • Connect with other people with axial SpA
  • Share your experiences
  • Ask the NASS team any questions you may have

Book via this link.…

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No NRAS Live this month!

Due to many of the NRAS team going to the BSR conference later in the month, there is unfortunately no NRAS Live this month. However, if you have missed any of their live broadcasts – remember you can watch ALL previous NRAS Lives via their YouTube channel.
 
They have even made this handy playlist, which has all previous lives events in order and ready for a weekend binge!

The TIPTOE Study into knee/hip pain

TIPTOE study

Do you or someone you know have knee or hip joint pain that is impacting daily life?

The TIPTOE research study is aimed at people 70+ with knee and / or hip pain, comparing a new support package, which aims to give people the knowledge, confidence and skills to live well independently, with standard care.

If you decide to take part, you will be put at random into one of two groups:

  1. TIPTOE Support programme: this includes having up to 6 personalised coaching sessions with a trained healthcare practitioner and you will also receive a copy of our ‘living well with joint pain’ book.
…

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NASS needs to hear from you

NASS is excited to launch a call for evidence as part of their efforts to establish a Gold Standard in Treatment and Care for Axial Spondyloarthritis as part of the Aspiring to Excellence programme.

NASS is looking for people with lived experience of axial SpA, and healthcare professionals to share with us their real-life examples of good treatment and care.

For people with lived experience, an example might be a course or education session you attended, a new way of being able to communicate with your healthcare team which improved your experience, or a routine that you were able to develop with your healthcare team to help with a specific part of living with axial SpA.…

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Arthritis & Me – Self Management Event

online patient eventWednesday 6th March 2024

Arthritis Action is running its first self-management event specifically targeted at the needs and lives of people aged 18-40. The online event will address topics such as: pain management, healthy eating & weight management, staying active, hobbies and social life, emotional wellbeing and pacing and distraction techniques.

Tickets are free and anyone interested in attending can contact events@arthritisaction.org.uk, or send a message via WhatsApp: 07702 813737, or book direct from Eventbrite.

New Hips & Knees: Britian’s Longest Queue?

With numbers on the NHS waiting list at a record high of 7.75 million and rising, on the 30th of November 2023, ITV’s flagship current affairs programme ‘ITV Tonight’ focused on the huge waiting lists for joint replacement surgery: Tonight – Series 25 – Episode 35 – ITVX

With input from Versus Arthritis, Dr Zoe Williams investigates the health impacts on the estimated one million-plus people currently waiting, in some cases for years, for trauma and orthopaedic treatment. The programme looked behind those figures and into the lives of those waiting in pain for transformative orthopaedic treatment, explored whether surgery is the only option for patients in severe pain, and discussed how people can wait as well as possible whilst awaiting treatment.…

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Chronic pain: What matters to you?

This research aims to better understand what it means to live with and manage chronic pain, from everyone’s perspective. You now have the opportunity to say what matters to you by participating in this survey.

By answering the questionnaire, you can help overcome some of the current uncertainties and challenges of chronic pain management. Your knowledge will enable the researchers to collaborate closely with patients and patient organizations to develop better care that are meaningful for people living with chronic pain and their families.…

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