June 2013

Director's Update

Dear all,

June/July marks the halfway point of the first year of our new 2013-2015 strategic plan, and I am pleased to be able to say that we are very much on target to achieve all of our key aims for this year, having already made significant strides in many areas.

One of these is ‘strategic direction and prioritisation for MSK from the centre’ (Goal 1, Aim 1), where we continue to build on the good relationship which we have established with NHS England while forging new links with other key players such as Public Health England and the various National Clinical Directors with a stake in MSK - besides obviously Peter Kay (MSK NCD), who continues to be closely involved in our MSK clinical networks project.

Our Alliance is also currently in a good state of health, and growing both in membership and (I would certainly argue) influence.  Our members’ input to our work is crucial, and their views and degree of involvement are ultimately the best measure for how successful we are at building a “cohesive, diverse and vibrant MSK community” (Goal 2…!).

The MSK clinical networks project is continuing apace, with Ann already having notched up scores of meetings with key individuals and having produced a refined workplan based around the 5 stages of Appreciative Inquiry. The more this project has progressed, the more the sheer magnitude of it has come into focus – but so has the potential for this project to deliver absolutely cutting-edge outcomes not just for MSK, but possibly for the entire long-term conditions “agenda”.

I have also attended various ARMA members’ events recently, including the Chartered Society of Physiotherapy's summer reception at Chandos House, where Dr. Steve Boorman commended the CSP’s ‘Fit for Work’ campaign and reiterated  that the NHS could save £0.5 billion by taking steps to cut high rates of staff sickness, as demonstrated in the 2009 NHS Health and Wellbeing Programme . Practical steps to help people with MSK disorders remain in or return to work are also captured in ARMA’s own Work Charter.

The NOS also hosted a very well-attended reception of the All-Party Parliamentary Osteoporosis Group (APPOG) AGM meeting, where a number of speakers including the MSK National Clinical Director spoke very emphatically about the importance of Fracture Liaison Services.

Internationally, the EULAR Congress took place in Madrid, with several ARMA members attending. In particular, NRAS presented the findings of their recent survey looking at what remission means to RA patients, which was reported in the EULAR daily news magazine.

…And finally, very soon I will be travelling to the 2013 Bone and Joint Decade annual conference, where I will be running a workshop for other National Action Networks (NAN) on building an effective national alliance. As the UK NAN for the Bone and Joint Decade, ARMA has a lot to contribute to other alliances across the globe - having in fact provided the model for the Bone and Joint Decade “movement” itself - and I am very pleased that the organisers of the conference have produced a very NAN-focused programme this year, based on feedback from the previous one. I have also contributed to the development of a handbook for NANs and a first-ever NAN advocacy toolkit, still in draft form, which could also be useful to us in the UK to support local/regional activism.

All the best,

Members' News and

Public Awareness Survey - Breaking Down Barriers

Public Awareness Survey -
Breaking Down Barriers

ComRes poll finds just 10% of the British public believes their government is doing a good job of raising public awareness about long term conditions like rheumatoid arthritis.

To coincide with the launch of the first ever Rheumatoid Arthritis Awareness Week on 24-30 June, the National Rheumatoid Arthritis Society (NRAS) has published new research revealing the British public’s lack of knowledge about this chronic disease, which affects an estimated 690,000 people across the UK.

In producing ‘Breaking Down Barriers’ NRAS collaborated with leading opinion polling company ComRes1 to survey the attitudes of the British public and discovered very limited understanding about the disease’s symptoms, health impacts and risk factors. Headline findings are:

  • Only 10% of the British public believed their government was doing a good job raising awareness of long term conditions, including RA
  • Just  10% of the British public had seen information displayed in public about the symptoms of RA
  • Only 41% of the British public said they understood the symptoms of RA
  • 3.7 million in Britain have a personal connection to the disease2
  • Only 33% of the British public said they knew the difference between RA and osteoarthritis2
  • Nearly half of respondents (48%) were unaware that RA affects a person’s life expectancy and only 16% knew the disease affects the internal organs.

Read analysis online.

Rheumatoid Arthritis Awareness Week

Rheumatoid Arthritis Awareness Week

Things have been exceptionally busy in the NRAS office preparing for it – arranging events, designing infographics, filming videos and writing articles. Thanks go to those of you who added to the collective voice and helped to promote it.

NRAS used the power of social media to help spread the message that RA can strike at any age. If you’re on facebook, twitter or any other social media platform then please do share their content and you could even join in with the Thunderclap - a crowdspeaking platform that enhances the impact of a social media message by helping people broadcast it simultaneously.

Read post online.

NRAS Fundraising on Kilimanjaro

NRAS Fundraising on Kilimanjaro

Climbing Kilimanjaro for NRAS

A group of enthusiastic explorers from the Midlands will be showing true dedication to their patients by giving themselves a mountain to climb. Ten nurses, physios and occupational therapists will be taking on the challenge of a lifetime as they attempt to climb Mount Kilimanjaro in Tanzania to raise money for the National Rheumatoid Arthritis Society.

Run for Rheumatoid

This year’s Great North Run takes place on the 15th September and promises to be another exciting event.  The run is the world's most iconic half marathon. The atmosphere is incredible, and raising much needed funds for worthy causes is a vital ingredient of the race.  NRAS is looking for a few remaining runners to join the team.

Read full event details online.

National Osteoporosis Society site

New Primary Care Resources
for Osteoporosis

Osteoporosis Resources for Primary Care is a website guide to support GPs and practice nurses in managing the wellbeing of their patients with osteoporosis.

Beginning with an introduction to the symptoms, causes and impact of the condition, the site then provides advice related to identifying those at risk, treatment options, negotiating the Quality and Outcomes Framework, and best practice implementation specific to osteoporosis.

The website is the result of a collaboration between the National Osteoporosis Society and the Royal College of General Practitioners.

Visit Arthritis Care's website

CEO appointment at Arthritis Care

Judi Rhys has been appointed as CEO of Arthritis Care - the leading UK charity supporting people with all forms of arthritis. She will take up her post in mid-August 2013.

Ms Rhys is currently acting Director of Operations for the MS Society.  Prior to that and following a career in the NHS and higher education, Ms Rhys was Wales Director for Diabetes UK, and then took up the same role at MS Society.

Read full post online.

Osteopathic team present to National Conference

Osteopathic team present
to National Conference

A pioneering project by the Osteopathic Team at Queens Medical Centre, Nottingham, where a team of osteopaths are working alongside specialist spine surgeons, presented its work at the Annual Conference of the British Association of Spine Surgeons this year.

The report detailed the assessment of the current data collection tools used within the Spinal Department at QMC, and assessed whether these tools are appropriate to determine the effects of osteopathic treatment.

Read more online.

Public consultation on Clinical Commissioning Guidance

Public consultation on Clinical Commissioning Guidance

​Over the past month, the British Orthopaedic Association has launched a public consultation on Clinical Commissioning Guidance documents.

The Clinical Commissioning Guidance documents have been developed through a project led by the BOA and Royal College of Surgeons (England) using a defined process, accredited by NICE.

Guidance has been developed on a range of topics,
and the five currently out for consultation are:

  • Foot & Ankle - Painful deformed great toe in adults
  • Hands - Painful tingling fingers
  • Hips - Painful osteoarthritis of the hip
  • Spines - Low back pain
  • Knees – Painful osteoarthritis of the knee

The documents are available for review, read more here.

BOA Journal for Trauma & Orthopaedics

BOA Journal of Trauma & Orthopaedics

Last month, the BOA officially launched its new journal for all professionals working in trauma and orthopaedics; the Journal of Trauma and Orthopaedics (JTO). Each issue of the JTO will include a wide range of leading feature articles, latest orthopaedic and specialist news, peer reviewed instructional content and structured educational material.

Readers will also be kept up-to-date on the latest issues and challenges facing policy and practice. In addition, readers can expect information regarding guest lectures and events on topical issues.

We hope you enjoy reading our first issue and we welcome and encourage you to comment, submit articles, news pieces and peer reviewed instructional articles in future issues.   The JTO will be free of charge and available four times per year.

For further information about the JTO and an online copy of the first issue, please click here.

ARMA Scotland in Parliament

ARMA Scotland in Parliament

ARMA Scotland met in Edinburgh in May, and agreed to seek meetings with Health Secretary Alex Neil MSP, and with other party spokespeople in support of implementation of the Scottish Public Health Network needs assessment for people with RA.

The Scots PHN report, which Dr Philip Mackie spoke on at the previous ARMA Scotland meeting, identified key issues, including the need to shift practice towards early diagnosis and treatment, ensuring the appropriate management of chronic disease, access to the multidisciplinary team, managing the cost pressures associated with RA drug prescribing, reducing work disability due to RA, meeting training and staffing needs, and auditing and improving outcomes.


ARMA Scotland was represented in the Cross Party Group on MSK conditions at the Scottish Parliament in June, where concerns were raised about delays in orthopaedic procedures caused by a 9% reduction in orthopaedic beds.

The group also heard a report on the need to improve the early diagnosis of hip problems in babies, where failure to spot problems early enough can lead to prolonged problems in childhood and adult life, and where detection rates in Scotland lag badly behind the best European levels.

NICE Board seeks Clinical Guidance committee

NICE Board seeks Clinical Guidance committee

The NICE Board has asked the Centre for Clinical Practice to develop a pilot programme to carry out rapid updates of aspects of its clinical guidelines that need updating as identified through a review process. Therefore we are seeking to recruit a standing advisory committee to NICE to assist in updating our clinical guidance.

NICE are currently recruiting panel members for the pilot programme.
You can now apply for the position of Standing committee member for the Clinical Guideline Updates Standing Committee.

Please find details of the role and how to apply on the NICE website.

Please note that the deadline for applications is 5pm on 10 July 2013.

If you have any questions or wish to discuss the role further, please contact:
Nicole.elliott@nice.org.uk - or by phone 0161 870 3101

Care planning for MSK

Care planning for MSK

Building on the development of care planning and the ‘Year of Care’ programme in diabetes, there is momentum to extend the care planning approach across long term conditions, and to accelerate its implementation in the NHS. On Thursday 20th June, Arthritis Research UK held a policy workshop to consider and help to define the care planning process in relation to musculoskeletal conditions.

The workshop brought together stakeholders including people with musculoskeletal conditions, care planning and musculoskeletal healthcare experts, policy leads and NHS England.

Many thanks to the ARMA members who took part. Further information will be available at Arthritis Research UK’s Musculoskeletal health services policy page shortly.

Please get in touch with Laura Boothman (l.boothman@arthritisresearchuk.org) if you would like to discuss this work - we warmly welcome suggestions of colleagues who may be interested to be involved.


National Arthritis Week 2013

Arthritis Research UK’s National Arthritis Week will run again this year from Monday 7th to Sunday 13th October 2013.

National Arthritis Week this year will be raising awareness of arthritis and musculoskeletal conditions and highlighting their impact on people’s lives. We will be asking people to make a Joint Effort pledge during National Arthritis Week, and support our work by raising money, sharing your experiences and finding out more about the realities of living with arthritis.

Keep checking the Arthritis Research UK website for updates and more information about National Arthritis Week 2013 www.arthritisresearchuk.org.

NASS Conferences in June & July

NASS Conferences in June & July

NASS Annual Patient Conference

On the 29th June 2013, NASS will be holding its annual Patient Conference in Birmingham for NASS members and their guests.  We are delighted to welcome a host of speakers and interactive sessions.  These will include:

  • Dr Raj Sengupta of the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath presenting 'AS: All the facts'.
  • Professor Dennis McGonagle will be updating members on the research into the link between trauma and AS which he introduced at last year's conference. The results of this should be very interesting, especially as so many members took part in the questionnaire.

See more details on the NASS website.


NASS Branch Development Conferences

On the 6th July 2013, NASS will hold the 5th and the last of a series of development conferences organised specifically for its 88 branches.  The previous ones, held in Edinburgh, Birmingham, Bristol and Bournemouth have been well attended and a huge success and we are looking forward to repeating this again in London in July.

Each conference has provided an opportunity to share good practice and ideas and to show branch members that they are not on their own, but in fact are part of a large network of people all helping to raising awareness of AS throughout the whole UK. We hope this will mean improved communication links in the future.

Read full details.

Ehlers-Danlos directory

Ehlers-Danlos directory

Ehlers-Danlos Support UK are building a medical directory for our members and we would like to hear from any specialists who are happy to treat individuals with EDS.

There are very little resources out there for people experiencing symptoms and we are especially interested in hearing from physiotherapists and rheumatologists from outside the London area.

Please send us your details to info@ehlers-danlos.org
or call us on 0208 736 5604 with any questions.

BSR Rheumatology Journal Alcohol Study

Rheumatology Journal's
Alcohol Study

New study finds patients with early arthritis consume less alcohol than controls, regardless of type of arthritis

Patients who have early arthritis consume less alcohol than controls, regardless of the type of arthritis, according to a new study published online today in the journal Rheumatology. In rheumatoid arthritis (RA) specifically, the inverse association between alcohol and disease was greater in men than it was in women.

Many new risk factors for RA have been discovered, although the only environmental risk factor that has been consistently shown to be associated with the disease is smoking. Studies examining alcohol consumption and RA have so far had conflicting results. In this new study, Annekoos L. Huidekoper, Diane van der Woude, and colleagues set out to investigate whether there is an association between alcohol consumption and arthritis in general, and with RA in particular.

Read methodology and findings online.


ERRF Calls for OA Research Proposals

ERRF Calls for OA Research Proposals

The European Rheumatology Research Foundation (ERRF) recently opened its doors to suggestions during the EULAR congress in Madrid, as announced by Prof Maxime Dougados. Following this initiative, the ERRF is launching a call for research proposals in the area of Osteoarthritis (OA).

The Foundation will support osteoarthritis projects related to the areas of predictors, progressions, mechanisms of pain, treatment strategies, early OA and tissue communication.

Eligibility and budget constraints apply. For more information and full application details, see the attached call announcement document (in PDF format) or visit the website at www.errf.net.

Researchers who wish to submit a project proposal will be required first to send the ERRF a Letter of Intent as described in the call announcement. Such a letter of intent should reach the ERRF Secretariat by 1 September 2013 at the latest.

Please spread the news to anyone who may be interested and working in this field.

Seestrasse 240 | 8802 Kilchberg | Switzerland
T: +41 43 311 55 66 | E-mail: florian.klett@errf.net | W: www.errf.net
ERRF office hours: Monday and Thursday 9 -17

PARE Youth Project

PARE Youth Project

Survey to identify needs & challenges of young people living with RMDs in Europe today

What are the challenges of young people living with rheumatic and musculoskeletal diseases in Europe today? Help us gather information by promoting a short survey.


This survey is developed by and for young people between 18-35 from all over Europe. It will only cost you about 10 minutes to answer our questions. By filling out the survey you help us to get a better understanding of what young people experience and how we can improve our information and support!

Spotlight on...

Future of Health Conference

Future of Health Conference

"Meeting the Challenge of Long Term Conditions"

3-4 October 2013
Business Design Centre
52 Upper Street
N1 0QH

In a letter introducing the event, Dr Martin McShane, NHS England says:

"The conference, organised in association with Dods, will focus on integrated care for people with long term conditions: a major element of the NHS outcomes framework. We want to showcase best practice in how we plan, pay for and deliver services for people with long term conditions that span health and social care."

Future of Health will be attended by:

  • NHS England Board Members
  • NHS England National Directors
  • Chairs/Directors from CCGs
  • Directors from CSUs
  • Members of HWBs
  • Public health/LTC leads from local authority and acute trusts

Read Martin McShane's full letter and more about the conference from the website:

Arthritis and Dietary Supplements Survey

Arthritis and Dietary Supplements Survey

There is a new online survey designed to research the determinants and prevalence of dietary supplement use in people with arthritis.

Sales of dietary supplements for joint health are worth around £250million a year and are the most popular types of supplements (Euromonitor) but very little is known about who takes them and why. The study will look at what supplements people with arthritis take, why and whether they are getting the information they need about them to make safe and beneficial choices.

To take part in the online questionnaire, please follow the link below:


Kate Lawson was diagnosed with psoriatic arthritis at the age of 26 after over 7 years of unexplained joint problems and operations. After almost a decade working for the Department of Health, she is retraining as a clinical nutritionist and conducting research to try to understand more about dietary supplement use by people with arthritis. The survey forms part of her MSc in Clinical Nutrition.

You can email any questions about the study to arthritissupplementsurvey@gmail.com

ARMA Calendar

ARMA Board Meeting                                     5th July

BJD World Network Conference, Rio        11th-13th July

Policy Leads Meeting                                     16th July

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