This is a category taken from the full feed of Musculoskeletal and Arthritis news provided by ARMA's members.

Publicity

Once more NRAS has had a very successful RA awareness week with thousands getting involved in the #behindthesmile campaign. Over 500 awareness packs were sent out in the post and there have been over 1,700 downloads of the posters and infographics from the website.

Our thunderclap went live on the first day of the week and surpassed our target, reaching over 175,000 people, and our RA awareness week frame was used by 2,000 people on Facebook and Twitter.

Click to open the full-size the Behind-the-smile NRAS team photo.

During the week, we launched part 2 of the #behindthesmile video with Jane deciding to talk about having RA.
You can view the video on our website www.nras.org.uk/ra-awareness-week

The full impact is still being calculated but we would like to say a huge thank you to everyone who has supported and shared our posts on social media throughout the week.

#WearPurpleForJIA

A big thank you ARMA and everyone who supported the campaign this year – we are overwhelmed by the fundraising activities that people organised this year in aid of JIA-at-NRAS through #WearPurpleforJIA.

This is an amazing campaign started by two mothers (Lynette and Rachel) just a few years ago. Over £12,000 has already been raised and the cheques are still coming in!

The UK Gout Society recently attended the 7th European Symposium of the Societal Impact of Pain (SIP 2017) in Malta, organised by the European Pain Federation (EFIC), Pain Alliance Europe, the Active Citizen Network and Grünenthal.
The event brought together stakeholders from across the EU and MSK community – and provided a platform to raise awareness of the impact of pain, exchange ideas and information, develop consensus and policy strategies, and debate pain as a quality indicator for healthcare systems.

One-in-five adults in the EU are currently living with chronic pain. Direct and indirect healthcare spending on chronic varies between 2-3 percent of GDP across the member states. With more than 500 million sick days per year in Europe, musculoskeletal pain alone causes almost 50 percent of all absences from work. Yet chronic pain remains poorly managed and under-treated – not only affecting individuals living with pain, and the people close to them – but society at large.

There were a wide variety of informative and inspiring workshops and plenary sessions at the conference. These included presentations by advocacy groups, such as AGORA (the coalition of 19 southern European rheumatic and musculoskeletal disease patient organisations), Fibromyalgie France (French Fibromyalgia Association), and Arthritis Care Scotland; as well as lead clinicians, educational institutions, the Spanish Ministry of Health, European Medicines Agency, the German Pain Society, Fit for Work and the European Commission. MEPs also took an active part in debates – offering attendees to email them directly with questions regarding chronic pain for the European Parliament.

Despite the disparate speakers and content, common themes were apparent throughout the conference. Calls for a cross-functional approach to tackling chronic pain were echoed across many of the working group presentations and plenary sessions. Patients, doctors, insurers employers, policy makers and politicians need to work together to push chronic pain up the political and healthcare agenda. The need for structured cooperation between healthcare systems across Europe to tackle the societal impact of pain was deemed to be imperative – as well as the need for greater research and surveillance.

Another important topic was the role of terminology in ‘making or breaking’ patient access to medicines and health services. Is chronic pain a disease in its own right – chronic primary pain – other than just co-existing with other conditions? There was also a report from the International Association for the Study of Pain (IASP) Task Force for the Classification of Chronic Pain and the current field testing of a new version of the WHO’s ICD-11 which now includes codes for chronic pain.

At the close of SIP 2017, Martin Seychell, Deputy Director General DG SANTE, European Commission, announced the launch of an expert group on the social impact of pain within the EU’s Policy Platform. He stated: “We cannot have a successful Europe without taking care of our most important asset – our people.”
Overall, it was clear from the conference that, while acute pain may reasonably be considered a symptom of disease or injury – chronic and recurrent pain is a specific healthcare problem. “The relief of pain should be a human right,” concluded the President of EFIC.

Following SIP2017, on 16th June, EU Health Ministers, under the leadership of the Maltese Presidency, called for a review of access to treatment for patients suffering from chronic pain.

RA awareness week 19-25th June

The RA Awareness week packs are flying off the shelves and we’re looking forward to an action-packed week.

NRAS is holding the 1st “Rheum for You” conference of the year in Swindon on the Wednesday 21st June and have lots of people signed up to hold their own events during the week. We have a different theme every day and you can keep an eye on our plans on the NRAS website, Facebook and Twitter channels.

#WearPurpleForJIA

NRAS is delighted to announce that the #WearPurpleForJIA 2017 Campaign has chosen to support NRAS again as their charity for the year.

Friday 9th June 2017 will be a day awash with purple everywhere and a great day to get young and old involved at home, school or work. Encourage friends and family to wear something purple, from socks to hats, and everything else in between!

Find out more on our JIA website.

World AS Day was on Saturday 6 May. Every year, our aim on the day is to increase awareness and understanding of AS.

We produced a short video called ‘What is AS’ explaining the condition and how it affects people and asked people to share it on social media. We were delighted to have a reach of more than 55,000 on Facebook alone. This is the first in a series of videos.

Click here to open https://www.youtube.com/watch?v=Tfoivx6Sgtc

 

We also worked with the BMJ this month to produce an infographic of the NICE Spondyloarthritis Guideline.

An A2 poster of the infographic was inserted into the early May edition of the BMJ and went out to 78,600 hospital doctors. We were able to give out copies at the BSR Conference and have further copies in the NASS office for anyone planning GP education. Just contact sally@nass.co.uk.

NASS will be working hard on social media to raise awareness of ankylosing spondylitis on World AS Day and we would really appreciate the support of all ARMA members with shares and retweets of our messages.

We will be using our @NASSchiefexec and @NASSexercise twitter accounts and our Facebook page.

#worldasday

The National Osteoporosis Society launched its new Message to My Younger Self campaign with a bang this month, earning the charity over 300 pieces of media coverage on TV, radio and national press.

The campaign, which runs throughout the summer until the end of October, is looking to start conversations about bone health between generations and launched with a focus on the need for a healthy, balanced diet.

Some of the key coverage included articles in The Daily Telegraph, Daily Mail and BBC Health Online, as well as BBC Radio’s Today Programme and Jeremy Vine show.

The National Osteoporosis Society is also revitalising its Stop at One campaign to encourage people to find out if they are at risk of osteoporosis.

Launching in May 2017, the charity will be piloting new campaign collateral (leaflets, posters and scratch cards) in eight fracture clinics across the UK targeting people over the age of 50 with an existing fracture.

The campaign has two main objectives: to encourage people who have broken a bone and are over 50 to ask for more information on osteoporosis and take an online quiz and to educate key staff in fracture clinics to put people at risk of osteoporosis on the correct pathway to a risk assessment.

 

My name is Keith Diaper and I am 40 year old husband and father from Hedge End in Southampton. I’m an electrician and a keen triathlete.

Starting on Saturday 1st April 2017 I will be doing one middle distance triathlon every Saturday and Sunday for six months – so I will be covering 3655.6 miles in total, over 52 events. That’s about the same distance as travelling from Southampton to New York.

A Middle Distance Triathlon is a 1.2 mile swim, 56 mile cycle and then a 13.1 mile run.

The reason for taking on such a challenge is to help raise awareness and funds for the charity Hypermobility Syndromes Association (HMSA). My wife, Pippa, has Ehlers Danlos Syndrome, one of the long-term conditions covered by the charity. This condition means there is a defect in her collagen which causes her joints to dislocate on a regular basis. She is in daily pain and suffers with fatigue. There is currently no cure for EDS and there is a possibility that she will one day be in a wheelchair.

Pippa was misdiagnosed for many years. The health professionals carried out many tests but thought Pippa had Fibromyalgia, due to a few similar symptoms. After many more visits to specialists over an almost 3 year period, she was finally diagnosed with EDS. Following this we came across the HMSA’s website, everything my wife was going through was listed along with lots of resources to help her cope.

By teaming up with the HMSA my mission is to bring wider awareness of their work and the conditions suffered by so many. I know we currently can’t cure this condition but we can educate people. If my challenge helps people who are in the situation my wife found herself in, then it would be worth it. Any funds we raise along the way will help the HMSA with their work, which covers research, support and education.

For more information contact keith@ironcause.co.uk.
Website: www.ironcause.co.uk
Phone: 07791 893638
Address: 5 Stirling Crescent, Hedge End, Southampton, Hampshire, SO30 2SA

The National Osteoporosis Society is launching “A Message to My Younger Self” – an awareness campaign about keeping bones strong and health. It begins on 12th April 2017 and runs through to World Osteoporosis Day on 20th October. NOS want the generations to have a conversation about healthy bones, to talk about the steps that can be taken to make sure bones are strong, and to give a voice to the millions of people with the condition.

The campaign is being fronted by Liz Earle who is personally concerned about the impact of social media on the eating habits of her teenage children, backed-up by research that we have conducted showing that 20% of 18-24 year olds have reduced or completely cut out dairy from their diets, which could potentially be storing up problems for them in later life.

The campaign has three themes – nutrition, exercise, and “your message”.

www.nos.org.uk/myyoungerself

First up is Nutrition (April and May); then Exercise (June, July and August including the 206 challenge – a sponsored walk hosted by Professor Alice Roberts on 11th June at Tyntesfield, a National Trust property near Bristol); and the initiative will end with “A Message to My Younger Self” on World Osteoporosis Day 20th October where celebrities, our supporters, ambassadors and our royal President will all be sharing messages to their younger selves and passing on tips and advice to the next generation.