April 2013

Director's Update

Dear all,

Back in January I described 2013 as being a potentially pivotal year for ARMA and MSK, and April has certainly been a very significant month for us.

Our Project Manager for the MSK clinical networks project, Ann Clare, is now in post, and has already met many of our members. She will be working with us P/T until the end of May 2014 on what is very much our flagship project for this year, and probably the next. During May and June, Anne will be collating evidence of good practice in MSK and building a database of MSK clinical leaders in England who could become “ambassadors” for MSK clinical networks in their locality (and beyond). If that could be you, please email Ann. More information about the project will be available on our website soon.

The BSR Conference is always a highlight of the year for ARMA and for most of our members, and this year ARMA hosted a session on MSK clinical networks, featuring presentations by Dr. Chris Deighton (BSR President), Dr. Alan Nye (PCRS President and Director of the Pennine MSK Partnership) and Colin Beevor (Matron and Clinical Nurse Specialist for Rheumatology; speaking as a medical advisor to NASS). The session was very well-attended and generated a very stimulating discussion. I also had the privilege of co-chairing, alongside Vicky Chamberlain from the RCN Rheumatology Forum, a session on optimising work participation for people with MSK disorders, which remains a very important issue for the entire MSK community, particularly against the backdrop of welfare reform.

Perhaps most significantly, however, on 30th April ARMA members had a very positive first meeting with Prof. Peter Kay, the recently-appointed National Clinical Director for MSK in England, aimed at finding out more about his role and discussing how we as a community can best support him, in pursuit of our shared aim of improving care for all people with MSK disorders. In a room filled to capacity, Prof Kay outlined some of his key priorities, including information, patient-centred outcome measures and a multi-skilled MSK workforce, and emphasised the need for our community to work collectively in an integrated way across the whole of MSK - which is of course ARMA’s raison d’etre. The key, he said, is to take the perspective of the patient. We very much view this as the beginning of a relationship, which we will take forward mainly through the MSK clinical networks project – where Prof. Kay will have an active input – and through regular meetings between himself and the ARMA community, which we will arrange in due course.

This week I am meeting the convenors of our ARMA networks to discuss how we can continue to build on the good work that they have done locally and nationally in a strategic way (note: these networks are distinct from the clinical networks project mentioned above). If you are an ARMA member organisation with a local network of supporters, please do get in touch with our existing ARMA networks if you are not already represented. 

The programme for the NHS Alliance Specialist Network Conference on 18 June, which ARMA had a key role in pulling together, is also now available online.

Finally, ARMA has expressed its support for transparency in clinical trials by signing up to the alltrials.net petition.

Best Wishes,

Members' News and

Introducing ARMA’s newest member:

Ehlers-Danlos Support UK

EDS UK was founded in 1987 to support and educate all those living with Ehlers-Danlos Syndrome. The organisation produces literature, DVDs and merchandise to increase the understanding in managing this condition.

They supply education and resources for the medical community and fund research. Raising awareness in this area is important as Ehlers Danlos Syndrome is often misunderstood and misdiagnosed. This enables better care and improvement when treating the condition.

Ehlers-Danlos Support UK provides a membership package that includes a bi-annual newsletter and a support network in your local area. They also offer members exclusive access to an area on their website containing past conference videos, a friendly specialists directory and previous issues of our newsletter ‘Fragile Links’. EDS UK host conferences and events to keep the community informed with the latest developments.

Read more about EDS and their ‘May awareness month’ booklet (PDF).

RA Awareness Week & an Emotional Publication

The first RA Awareness Week in the UK will be taking place between the 24th and 30th June and planning is now well underway. The theme for the week is that young people get RA too ...

Read other items online.

World AS Day & GP Awareness

GP Awareness Campaign takes a huge leap forward

The next stage of NASS GP awareness campaign was launched at the British Society for Rheumatology conference on 23 April 2013. This is the UK's leading rheumatology event and the launch was very well attended. Meeting-in-a-Box is a CD-ROM which was jointly developed by NASS and AbbVie Ltd. It contains all the ...

Read full article online.

World Lupus Day 2013

May 10th is World Lupus Day

For World Lupus Day this year, LUPUS UK will be launching the first in a short series of video clips that feature interviews of people with lupus talking about their experiences. This first video clip highlights the difficulties many people with lupus face ...


Read online.

Arthritis Care Week and Chat4Change

On Monday 13th May Arthritis Care will launch Arthritis Care Week, with the strapline something can always be done.

AC will be asking people what their “something” was - that first step that got them started in trying to manage their arthritis...  Read 2 articles online.

From John Wright of ARMA Birmingham

As convenor for the Birmingham group I had the pleasure of attending the BSR conference at the ICC Birmingham and being able to assist on the ARMA stand there. I met many interesting people and made new contacts which I hope will be beneficial to our group, it was also good to meet members of ARMA network groups ...

Read more online.


e-Breakthrough April Newsletter

EULAR are delighted to share the 3rd edition of the EULAR PARE e-Breakthrough Newsletter with you today!

Please find it as a pdf attachment with lots of news and reports around the work of the EULAR Standing Committee of PARE and other EULAR activities. Please share it widely within your organisation and with other key stakeholders.

If you have any comments or feedback we would be very happy to receive this - also, if you would like to feature some of your national activities in the future issues do not hesitate to get in touch with Florian and Birte at the EULAR secretariat. We will be happy to receive contributions for the Autumn Issue by 1 July 2013 and look forward to hearing about your organisations' activities!

EULAR's sincere thanks go to Diana Skingle, our volunteer co-ordinator and editor of e-Breakthrough, for her continuous support and commitment.

Read online.

EULAR Alerts and Congress Countdown

The EULAR Congress 2013 takes place in Madrid on Wednesday, 12 June 2013, and we are pleased to share the latest information with you.

Click to read EULAR news and congress details.

Bone and Joint Decade

Welcome to the first e-newsletter of the Bone and Joint Decade and the first update for 2013

2012 was another year of achievement; we continued to grow our relationships with the WHO, to develop our network and to encourage and support projects that raise awareness, priority and improve musculoskeletal conditions and injuries.

Read 10 other BJD items online.

Policy Items

Call for Evidence - Policy and Support Services

Policy Exchange (a non-partisan educational charity) have launched a ‘call for evidence’ – joining up employment support and welfare in the UK. To find out more please click here. The closing date is 3rd June 2013.

Read full article online.

ARMA Calendar

Medicine and Me - Aberdeen                         10th May

Policy Leads / Stakeholder Meeting            16th May

EULAR Congress                                               12th-15th June

Medicine and Me - Cardiff                              19 June

ARMA CEO Meeting                                        3rd July

ARMA Board Meeting                                     5th July

Policy Leads / Stakeholder Meeting           16th July

Check our website calendar for meetings and events.

  To see previous editions of the newsletter, click here.

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