Arthritis and Musculoskeletal Alliance
This is a category taken from the full feed of Musculoskeletal and Arthritis news provided by ARMA's members.
  • The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK, and our mission is to transform the quality of life of people with musculoskeletal conditions. We have 40 member organisations ranging from specialised support groups for rare diseases to major research charities and national professional bodies.

Patients

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. Secondary school usually means bigger and heavier backpacks, a larger campus, many flights of stairs and changing classrooms several times a day. The booklet can help you to find ways of reducing the physical stress on our children. Usually, by Christmas children have started to develop the stamina to get through a school day and all may be well from then on.

However, a few children also start creeping into the stage where we see the highest new diagnosis rates of hypermobility … puberty! Others may struggle to keep up with their peers or with feelings of being different. This is the worse age, emotionally, for children to feel they are so different from peers and they often need more support emotionally.

Don’t be afraid of asking questions in the HMSA Family and Education group on Facebook. This group has teachers, OTs, nurses and SENCOs and of course, other families going through the same issues. There is also a section for primary school children to read about their conditions on our website hypermobility.org.

Parents and teachers can also speak to HMSA helpline (033 3011 6388) staff, who will do their best to assist you or find someone who can.

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’. This will guide funders for future research.

What can you do to help?

If you have experience of problematic knee replacements as a patient, carer or professional: Tell us the top 3 questions you would like to see answered by future research at www.jlarevisionknee.com. The survey goes live on Monday 10 September 2018 and we are hoping to get as many responses within the first month as possible.

For any queries or please email jlarevisionknee@gmail.com

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.

It was developed through a series of focus groups and research with patients and physiotherapists, and is designed to raise awareness of the expertise the profession has in getting people with long-term conditions more active.

CSP assistant director Sara Hazzard said: “We wanted to develop something that harnessed the expert knowledge our members possess to ultimately promote Physiotherapy and its unique role to improve the health of the nation.”

“Our research found that patients see physios in a really positive light but that they aren’t always associated with physical activity. So unlike campaigns that are often aimed at the general public, ours has been designed to reach the people who can be – or are already being – helped by their advice. It aims to take an empathetic approach and build on the trust that the public has for the profession.”

The CSP has developed digital content that is built around the specific barriers that were identified in the insight phase, along with practical advice on how those concerns can be overcome. Additionally a series of case study interviews will aim to inspire conversations between physiotherapists and their patients about activity levels.

For more information visit csp.org.uk/activity or join in the conversation on Twitter using the #loveactivity.

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.

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. The deadline for UK entries is Tuesday 11 December 2018, entries should be sent to projects@arma.uk.net by that date.

As with previous years, the national winning essays will be accepted in their native language and the EULAR Secretariat will take care of translating them into English.

EULAR looks forward again to receiving many inspiring and encouraging essays from all over Europe!

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.

The Brain, Mind and Pain Grant is the first grant into chronic pain that is run by patients, for patients. Winners were judged by a jury of patients and patient representative, with the support of scientific experts.

“Patient voices are essential to drive the research and innovation agenda. Our lived experience should be at the centre of every research project because no one knows the disease better than the person living with it,” says patient jury member Joke Jaarsma.

The grant received over 19 applications from over 8 European countries. The grant ceremony was attended by over 100 people, including:

  • MEP Danuta Jazlowiecka (EPP, Poland)
  • MEP Marian Harkin (ALDE, Ireland)
  • MEP Nessa Childers (S&D, Ireland)
  • Pain Alliance Europe President Joop van Griensven
  • EFNA Executive Director, Donna Walsh
  • Mark Fladrich, CCO Grünenthal
  • EFNA President Joke Jaarsma

The Brain, Mind, and Pain Patient Centred Innovation Grant is a joint project run by Pain Alliance Europe and financially supported by Grünenthal, with partner support from the European Pain Federation (EFIC), the European Academy of Neurology (EAN), and the European Federation of Neurological Associations (EFNA).

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.

You can access the resources at www.iosteopathy.org/osteopathy-for-health and support the campaign by using #LoveYourHealth on social media. We would like to thank sincerely the members of ARMA who supported this campaign and shared #LoveYourHealth messages with their followers.

See #LoveYourHealth on Twitter.

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.

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.

For more information, please contact info@arthritisaction.org.uk or 020 3781 7120 and Arthritis Action will be able to provide you with further details.

Alternatively, please register via this Eventbrite link.

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? Each ‘lecture’ was a maximum of 30 minutes, with wiggle breaks in between, and it was great to see the ‘beanbag corner’ being used as well as people standing up, moving and stretching when they needed to.

We asked Hannah Ensor, what was her favourite part of the day?

“Well, first I apologise for forgetting to put out plates with the snacks! But for me, there were two stand-out highlights: First, it was being reminded how incredibly useful discussing solutions with other bendies can be. During a discussion someone shared how their health care professional had recommended that they ‘pace’ their nutrition – so they don’t end up constantly having to rest after full meals, and instead eat little and often, which enabled them to avoid the post-meal crash. I am definitely going to look at whether this will help me too!

The second highlight was that every single person who handed in a completed feedback forms said they felt the workshop had improved their understanding of how to manage a hypermobility syndrome, and would be making changes as a result of the workshop. Which is totally awesome!”

Here are a few comments from the delegates:

  • “The formal sessions were excellent, but the opportunity to talk to others was the icing on the cake.”
  • “The session was fantastic, so useful and funny too! I learned so much.”
  • “[The most useful part was] the pacing info and being able to talk to others with HMS.”
  • “Very well presented in manageable chunks, delivered in a way that was very listenable to and easy to understand.”

Pain Alliance Europe are asking for responses to the 2018 edition of the Survey on Chronic Pain, which highlights how pain can affect the work-life of pain patients.

The charities who are members of Pain Alliance Europe (PAE) are inviting people with chronic pain or their carers to fill in this short survey on the effect of their chronic pain on their quality of life, their work situation and about any financial help they receive. The survey starts with some basic questions.

This is the second survey that PAE has created on the theme of chronic pain, in a series of annual surveys on the impact of pain. With each survey, PAE will analyse a different aspect of the impact of pain on the quality of life of the chronic pain patients in Europe.

A report will be created at the end of this survey, comparing the pain patients’ experiences in different countries. This report will be publicised by Pain Alliance Europe in order to reinforce their actions and promotions in order to make politicians and policy makers more aware of the important issue of chronic pain.

You can also follow @pain_europe on Twitter and share the poster [PDF].

 

The HMSA are busy preparing for their ‘Taking Action 2018-2022’ launch, which aims to guide strategy for the next 5 years. Part of that process is ‘The Big Conversation’ Members Consultation survey.

You can read about this and more from the February edition of HMSA’s e-news.
Learn more about:

  • livestream chats from HMSA’s resident occupational therapist;
  • the HSD Ambassador and Youth Patron preparing for the Hypermobility Management Workshop;
  • a consultation on the Call 111 campaign;
  • the helpline;
  • and an update from the CEO, Donna Wicks.