Category: Patients

Back to school – Educators Guide to the Hypermobile Student

September always kicks off with a huge surge in requests to the Hypermobility Syndromes Association for assistance with children struggling with school. The HMSA produces a booklet called ‘The Educators Guide to the Hypermobile Student‘. This booklet, beneficial for parents and those in education, can help explain the impact of these conditions on the individual in an educational setting. The guide is available from the website shop, hypermobilityshop.org, and is currently at a reduced price.

Students going into secondary school often start having problems because of the environmental change.…

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BASK Revision Knee Replacement Priority Setting Partnership

Help us guide future research about problematic knee replacements

The British Association for Surgery of the Knee (BASK) is running a Priority Setting Partnership (PSP) in partnership with the James Lind Alliance (JLA). The aim of this process is to bring patients and carers together with a range of healthcare professionals. We want all groups to highlight uncertainties relating to the assessment, management and rehabilitation of ‘patients with a problematic knee replacement’. We will thereby identify future research questions and ultimately publish a list of ‘top 10 research priorities’.…

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Love Activity, Hate Exercise? from the CSP

The Chartered Society of Physiotherapy launches a summer campaign which aims to tackle the growing issue of physical inactivity across the UK.

‘Love Activity, Hate Exercise?’ addresses the emotional as well as physical barriers millions of people with long-term conditions face in being more physically active.

The campaign is aimed at people aged 40-70 years old that are living with conditions such as arthritis, diabetes and heart disease, after research from the CSP found that more than 30% are completely inactive each week.…

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Petition for access to specialist lupus care

The Pembrokeshire Lupus Support Group and LUPUS UK are petitioning the Secretary of State for Health at the Welsh Assembly Government to remove the ‘gate keeper principle’ from their healthcare provision.

Patients with lupus and other rare autoimmune illnesses in Wales are being denied the right to access expertise that could really benefit them in the long term.

You can see more about the problem, read the petition and sign it here.

Launch of EULAR`s Edgar Stene Prize Competition 2019

On behalf of Nele Caeyers, Chair of the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE); Dieter Wiek, EULAR Vice President, representing PARE; and Polina Pchelnikova, Working Group leader of the Edgar Stene Prize; the EULAR secretariat is delighted to announce the call for entries for the Edgar Stene Prize Competition 2019.

People with rheumatic and musculoskeletal disorders are invited to write about their personal experiences submitting essays on the topic of:

“My ideal employer – Work without barriers for people with RMDs”

Please find more information in the attached documents [both PDFs]:

Please take a careful look at the deadlines and entry rules mentioned in the respective documents.…

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Winners announced for European patient-driven pain grant

The inaugural Brain, Mind and Pain Grant announced its winners in June, naming three innovative, patient-centred projects:

  • Master Your Pain by Groningen University – an e-health platform to help patients with rheumatic pain self-manage their symptoms
  • ASPERGA Association for their prototype auditory aid that aims to reduce sensory pain in people with autism spectrum disorder
  • MyBrainNet by Dystonia Europe – a central platform for neurological brain diseases, providing information to patient groups and patients to help improve their quality of life.
…

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#LoveYourHealth – Promoting public health and raising the profile of osteopathy

Throughout April, the Institute of Osteopathy has been promoting their #LoveYourHealth social media campaign, showcasing key health and wellbeing messages with the public. The focus of the campaign was to provide practical advice and tips to help people make informed decisions to improve their health.

#LoveYourHealth, which was centred around International Osteopathic Healthcare Week, showcased new patient-facing resource pages that the iO has recently developed around a number of key themes:

  • Getting active
  • Healthy aging
  • Sleeping better
  • Health at work
  • Understanding persistent pain

The focus of the social media campaign was to promote the positive role that osteopathy plays in supporting the health of our patients.…

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Patient survey on MSK self-management apps

EULAR has funded a project aimed at understanding the development, evaluation and implementation of mobile phone applications for self-management in patients with rheumatic diseases.

Following a systematic literature teview, the project task force is now at a stage where it would like to gain insights into the patient’s views, perceptions and current use of health apps for self-management.

EULAR therefore kindly asks you to fill in the following survey:
surveymonkey.com/mHealthAppsSurvey
It takes 5 to 10 minutes to complete.

New Self-Management Event in Blackpool

Arthritis Action will be holding a new two-day Self-Management Event on 2-3 May 2018 between 2pm–4.30pm at Blackpool Central Library, Queen Street, FY1 1PX

The aim is to help attendees take control of the symptoms of their arthritis, covering topics such as:

  • The impact of physical therapies
  • How you can best manage your pain
  • The benefits of exercise and a healthy diet
  • Ways to work in partnership with healthcare professionals

This event will be free of charge and refreshments will be provided, and is open to all.…

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Hypermobility Management Workshop – a great success

The Hypermobility Syndromes Association, in partnership with Stickman Communications, hosted a Hypermobility Management Workshop on Saturday 25 February, with sections on exercise, pacing, flare-up plans, pain, and communicating about hidden disabilities.
The lecture-format sessions were in Hannah Ensor’s typical style – straightforward, with a dose of humour. The group discussions then provided a valuable opportunity to discuss and apply the information to daily life, sharing and exploring different solutions to the challenges we face.

Of course, being about pacing, what better opportunity to practice what we preach?…

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