January 2014

CEO's Update

Dear all,

We’re already one month in to the new year, but if 2013 was a very good year for MSK, I think we have every reason to believe that 2014 will be even better. The new year finds ARMA in good health, with a growing membership and a number of important irons in the fire, as well as a number of new Trustees.

This is the second year of ARMA’s 3-year plan, and we have a new strategic plan for 2014. Like last year, the MSK clinical networks project in England remains a key priority for us this year, and we will continue to work closely and build on our relationship with NHS England and with all key MSK stakeholders in England. In addition, and in recognition of the growing emphasis on integration across health, social care and public health, we are placing a greater emphasis on the public health and physical activity side of MSK, building on the Global Burden of Disease data.

Metrics continues to be an important issue for MSK in its own right, and we have therefore replaced some of the more specific objectives in this area (eg around QOF) with a single Aim dealing with outcomes measures for MSK which are “fit for purpose”, whichever specific form they may take. The General Election in 2015 also provides us with an important opportunity to get MSK much more “on the map”, and we as a community will be proactively engaging with MPs between now and then, starting with an ARMA election manifesto.

Last but not least, the Bone and Joint annual conference and international summit is always part of our plans, but this year it will be held in London on 12 and 13 October, to coincide with World Arthritis Day and kicking off Bone and Joint Action Week, and ARMA will be leading on its delivery. Planning for this is still at an early stage, but we are confident that this will be a milestone event for MSK, with high-level involvement from the UK and internationally.

So, we have another full year ahead of us, but one which promises many more good things for MSK and for our Alliance.

The only other thing I’d like to draw your attention to in this update is my new blog entry for National Voices on networks in the new NHS in England.

Best wishes for a very successful 2014.

Members' News and
Resources

ARMA Lecture 2013 is now up on site

In November 2013, ARMA organised its fifth annual lecture, in partnership with NHS England’s National Clinical Director for MSK Disorders, Professor Peter Kay.

Joining Peter as speakers were two further NCDs: Professor Charles Greenough, National Clinical Director for Spinal Disorders, and Professor Chris Moran, National Clinical Director for Trauma. Together they discussed the role of national leadership in MSK and improving outcomes for people with musculoskeletal conditions.

You can now hear the full audio of their presentations and download the accompanying slides from this page on the ARMA website.

BSR’s dates for your diary

BSR’s dates for your diary

Rheumatology Conference 2014 - 29 April 2014

This year one of our four keynote speakers will be Professor Deborah Symmons, Director at the Arthritis Research UK Centre for Epidemiology, Director and Research Lead for Prevention of Co-Morbidity at the NIHR Manchester Musculoskeletal Biomedical Research Unit, Honorary Consultant Rheumatologist in the East Cheshire NHS Trust and Principal Investigator on the Norfolk Arthritis Register and the BSR Biologics Register for RA.

She will speak about "the outcome of RA: learning from observation" during the Heberden oration.
The abstract presentation sessions have now been added to the programme.

Autumn conference 2014 - save the date
The 2014 Autumn conference will be in Nottingham on 27-28 November.

Acupuncture Research symposium

Acupuncture Research symposium

King's College London, the Strand on Saturday 29th March.

This full-day event offers an excellent opportunity to hear leading researchers provide the latest evidence to Speakers include Dr Hugh MacPherson, Dr Mike Cummings and Arya Nielsen. For more information and to book your place, please visit the ARRC symposium website.

Acupuncture Awareness Week

3-10th March 2014 – see www.introducingacupuncture.co.uk

SIGN Recommends Acupuncture

It is hoped that this evidence-based guideline from the Scottish Intercollegiate Guidelines Network (SIGN) – see their website here –  will provide the information needed to improve clinical outcomes and quality of life for patients with chronic pain. The guideline states that acupuncture should be considered for short-term relief of pain for patients with chronic low back pain or osteoarthritis.

Peter Hain MP

The British Acupuncture Council is delighted to announce that Peter Hain MP has agreed to become the British Acupuncture Council’s second patron.

National Clinical Audit registration closed

Thank you to everyone who has registered their unit with BSR's national clinical audit for early and inflammatory arthritis. We now have 90% of all specialist rheumatology units in England and Wales signed up.

We are currently collating the registrations we have received and will be providing users with login details for the web-based audit tool shortly.

New App for Pain and Planning

New App for Pain and Planning

Congratulations to FibroMapp which has now been approved by the NHS as a healthcare app that they are happy to back. FibroMapp is in fact the ONLY pain management/tracker app that has been approved so far. Currently it is only available on Android.

FMA UK has been working with the developers, who have personal experience of fibromyalgia, to provide this means of recording symptoms, medication and other factors so that these can be analysed by the patient and passed onto the medical professionals treating them. The app also provides reminders on when to take medication, which is so useful when on multiple prescriptions. It can work for other conditions although specifically developed for fibromyalgia.

FMAUK FibroMapp is available to purchase at £3.99 by following this link, with 50% of proceeds being donated to FMA UK.

Vasculitis UK Announce the Appointment of a New Medical Advisor

Vasculitis UK Announce the Appointment of a New Medical Advisor

Vasculitis UK Trustees are delighted to announce that Dr Richard Watts has joined Vasculitis UK as a medical advisor.

Richard qualified in medicine at Oxford University. He trained in rheumatology at the Middlesex Hospital, Addenbrooke's Hospital in Cambridge and the Norfolk and Norwich Hospital, Norwich. He is a consultant rheumatologist in Ipswich and senior lecturer at Norwich Medical School and Visiting Professor of Rheumatology at University Campus Suffolk. His research interests are the epidemiology and the causes of vasculitis, together with the informational needs of patients and their carers.

Richard joins Professor Lorraine Harper as advisor to the charity. Lorraine is a graduate Edinburgh University. She trained in kidney disease, and is currently the Professor of Nephrology at Birmingham.

The NRAS Roadshows are back for 2014!

The NRAS Roadshows are back for 2014!

NRAS held four roadshows that were hugely successful in 2013. It’s a great way to meet others living with RA, learn about how you can get involved with the work of NRAS and make a real difference locally and nationally to the lives of those living with RA. NRAS members can attend for free and a small charge will be made for non-members. Almost eighty people attended last year but it would be great to see even more of you this year.

As you can see below, the first roadshow date is fast approaching so please let us know if you would like to attend by emailing groups@nras.org.uk.

The 2014 dates for your diary are:

12th March – Holiday Inn, Elstree (North London)
2nd April – Engineers House, Bristol
14th May – Woodland Grange, Leamington Spa
25th June – Marriott, York

The roadshows will run from 10am to 4pm (hot buffet lunch and refreshments included) with presentations and workshops on a variety of topics including:

  • The work of your society - NRAS
  • Being a local representative for NRAS at events,
    within rheumatology departments and lots more
  • Representing the patient voice
  • Health policy, politics and NHS changes

The NRAS roadshow days promise to be informative, interactive, stimulating and fun. Book your place today as spaces are limited. If you have any queries please contact us on 0845 458 3969 or email us at the address above.

Patients in Focus Awards 2014

Patients in Focus Awards 2014

The deadline to submit your entry into the NRAS Patients in Focus Awards is fast approaching – Friday 7th February 2014

• Write your entry - a maximum of 3 A4 sides

• Include any supporting material you may wish to provide

• Complete the form and have it signed by your clinical lead

• Send it to NRAS by Friday 7th February 2014

Applications forms and further information are available on the NRAS website www.nras.org.uk or by calling the NRAS office on 0845 458 3969.

 

New for 2014 – the Brighton Marathon

NRAS has places in the Brighton Marathon for the first time. Join the team on the 6th April to take part in the second largest marathon in the UK. This year the course has been changed slightly to allow keen runners to record a faster time. Once you have finished the race come and meet us in the charity village where we will be waiting to give you a huge pat on the pack and a much needed sit down!

If running a marathon sounds like too much hard work why not take on a challenge that needs no prior training? Take to the skies and take part in a tandem skydive. Our annual skydive takes place on the 17th May at Hinton Airfield in Northampton. It’s a great afternoon which ticks every box if you are an adrenalin junkie!

For more information on all our events please contact val@nras.org.uk or call on 01628 501547.

RCGP Wales endorses new Motivate 2 Move website

RCGP Wales endorses Motivate 2 Move

RoyalCollege of General Practitioners Wales Leads the Way on Physical Activity Resources for GPs

The RCGP Wales has endorsed the Motivate 2 Move website as an educational tool for health professionals. Developed by Dr Brian Johnson, GP and member of the Faculty of Sport and Exercise Medicine, Motivate 2 Move offers all health professionals the tools and information to enable them to educate, motivate and encourage patients about the benefits of physical activity.

The new website is also supported by Ann Gates from Exercise Works and both Ann and Brian have put together this handy overview of Motivate 2 Move and Exercise Works resources for GPs and health professionals looking for information on how to promote exercise in everyday consultations. Read Motivate 2 Move Resources overview.

Resources for Health Professionals from Exercise Works

Exercise Works specialises in providing bespoke training courses for all aspects of the NHS, health care organisations, doctors, allied health professionals, charities, universities and work places on the benefits of exercise as a critical medicine. We train health professionals to give safe and effective exercise advice to patients, every consult. For course details contact Ann and her team here. Courses can be tailored from 2 days to half day sessions.

To support your patients during a consultation, Ann worked with McGraw Hill medical to provide over 70 "patients exercise sheets" – just a click, and your patients are supported by an information sheet designed to encourage and inspire disease specific exercise, following your medical advice. NHS Scotland are using the sheets as educational learning for their staff: check out 10 sample sheets on their e-learning site here.

Our training handbook (ISBN 978-0-992624249-0-3) is a great and easy read. It aims to train all health professionals (from whatever background) to give exercise advice and support that is disease specific. Buy it now and train to give exercise advice confidently and have available as a reference source. We also have some great patient information and exercise tools. See our store for more details and purchase costs.

We provide evidence based updates on exercise and disease, both prevention and treatment, on a daily basis via our blogs and social media sites. Please follow us and share our great resources. Our professional’s resource page is also popular with health and fitness professionals so please check it out.

Exercise Works also specialises in developing incredibly innovative and successful physical activity campaigns using contemporary design and social media.

PMR-GCA Support Groups and AGM Speakers

PMR-GCA Support Groups
and AGM Speakers

PMR-GCA Scotland is pleased to advise that in 2014 we are expanding our Support Group network beyond Dundee. Following an informal first meeting in Inverness, we will be holding a similar meeting in Edinburgh in February and hopefully in Glasgow in late Spring. It will depend on the appetite of people attending whether a more formal arrangement will follow but it is only by talking to people affected with the two conditions that we can ensure that the right non-medical support is made available. We also distributed a questionnaire amongst our contacts just before Christmas and have received responses which will help us further build the charity’s effectiveness. The full analysis should be completed by March 2014.

We are able to confirm our 2014 AGM and Annual Meeting which will be held on 17 April 2014 at the Queen’s Hotel Dundee. Two speakers have been arranged:

Dr Lisa Hutton: Consultant physician/rheumatologist at Inverclyde Royal Hospital. Her interest in rheumatology and osteoporosis began in Aberdeen where she worked at the Osteoporosis Research Unit with Professor David Reid and Professor Stuart Ralston and was one of the authors of the first SIGN guideline on Osteoporosis. She completed her rheumatology training in Glasgow before taking up her consultant post at Inverclyde. Since this time she has overseen the establishment of DXA facilities at both major hospitals in Clyde.

Eric Clark: Internationally acclaimed investigative journalist and author who has experienced the trauma of a PMR & GCA diagnosis and is currently working on a book with Professor Bhaskar Dasgupta provisionally entitled ‘PMR and GCA At Your Fingertips’. Some of our members have contributed to this landmark book.

PSALV, Europso, IFPA and SIGN

PSALV, Europso, IFPA and SIGN

PSALV distributed its latest newsletter to members, clinicians throughout Scotland, MSPs and various other interested individuals and groups involved with skin and joint issues.

 

Europso Event, November 2013

PSALV attended an event organised by the Federation of European Psoriasis Associations (EUROPSO) at the European Parliament in Brussels, November 2013.

The event in the Parliament gathered representatives of patients’ associations, healthcare professionals, industry and policy-makers to discuss ways of tackling the burden of chronic diseases in Europe, with a special focus on psoriasis and psoriatic arthritis. A video was shown from Neil Betteridge, Vice President, EULAR, addressing the issues of those with psoriatic arthritis and the World Health Organisation's resolution on psoriasis and psoriatic arthritis of May 2013.

 

Patient Charity Submission

PSALV submitted a Patient Charity Submission to Scottish Medicines' Consortium (SMC) re Stelara (Ustekinumab) for the treatment of Psoriatic Arthritis, in January 2014.

 

PSALV receives diploma from the International Federation of Psoriasis Associations

PSALV is delighted to report that we have received a diploma as a member of IFPA, the International Federation of Psoriasis Associations in recognition of our participation in IFPA's international film project 'Under the Spotlight'. PSALV's Director Janice Johnson was featured talking about her experience of psoriasis and psoriatic arthritis - you can watch the film at underthespotlight.com

 

SIGN guideline on the Management of Chronic Pain

SIGN Guideline 136, "Management of Chronic Pain", is now available to view online. This Guideline provides recommendations and treatment pathways based on current evidence for best practice in the assessment and management of adults with chronic non-malignant pain in nonspecialist settings, including self management, pharmacological,psychological, physical, complementary and dietary therapies.

You can view the guideline and the accompanying patient pathway on www.sign.ac.uk/‎

 

Experience of UK benefits policies?

Then a Glasgow Uni researcher wants to talk to you. If you are disabled, or have additional support needs, and are in receipt of certain benefits, Kainde Manji, Doctoral Researcher at Glasgow University would like to talk to you about your experience of claiming, and how UK government benefits policies affect you.

The purpose of this study is to find out about the experiences of people in Scotland who have individual support needs, and the way that these policies are affecting them. To take part please email mk.manji@research.gla.ac.uk.

Lupus UK Information Quality

Lupus UK Information Quality

In December 2013 LUPUS UK were awarded Information Standard Certification following the introduction of a new information production system. This was part of our efforts to ensure we continue to provide the public and patients the highest quality, evidence-based information that we can.

As part of the assessment, two of our factsheets were reviewed and updated; ‘Lupus and the Brain’ and ‘Lupus and Pregnancy’. We now aim to review and update all of our existing range of publications within the next three years. All publications that have gone through the new production system will bear the Information Quality seal.

Healthy Working Lives - Scotland & Westminster

Healthy Working Lives -
Scotland & Westminster

In Scotland we have partnered NHS Healthy Working Lives (HWL) to deliver one hour Arthritis awareness sessions to businesses. The aim is to improve workers’ knowledge and understanding of a range of health issues that can affect people in the workplace.

In Westminster we have taken part in a national campaign to oppose the “Lobbying Bill”, which will restrict charities and campaign groups from doing policy and campaigning work. So far, the campaign has had limited success in curtailing some of the Bill’s worst effects. Sadly, the final version will still have a chilling effect on charities’ abilities to campaign on issues within 7 months of a general election.

COTSS-R & Naidex National

COTSS-R & Naidex National

Naidex National is an exhibition focusing on independent living, with exhibitors of equipment, demonstrations, presentations and seminars. Delegates will be able to visit the COT Zone where there will be a presentation from Charlie Laver, COT Specialist Section Rheumatology chair, aimed at informing Occupational Therapists and AHPs working with people with inflammatory arthritis, and exploring the changes in Rheumatology OT since the introduction of anti-TNF treatments.

UK Gout Society & the Annals of Rheumatic Disease

UK Gout Society
& the Annals of Rheumatic Disease

The UK Gout Society had a busy week w/c 13th January following the publication of a new study published in Annals of Rheumatic Disease. Authored by Dr W Zhang and colleagues from City Hospital, Nottingham, the paper reported a significant increase in the prevalence of gout over the last 15 years with one in 40 people in the UK now affected. Researchers looked at the Clinical Practice Research Datalink (CPRD) to analyse the number of existing and new cases of gout in the UK between 1997 and 2012. Between this period, the prevalence of gout rose by 64% - increasing by around 4% every year.

Despite the soaring numbers, the study researchers said access to effective medication continued to remain a problem for gout patients. In 2012, fewer than one in five patients were prescribed medication within six months of their diagnosis, and only around one in four were on this treatment a year after diagnosis.

The UK Gout Society received many media enquiries in response to the story and was widely commented in the print media including the Daily Mail. In addition, the charity undertook nearly 20 live broadcast interviews which helped to raise national awareness of this debilitating condition. These included BBC Radio Five Live, BBC Radio Scotland, BBC Radio Wales and the BBC News Channel (TV).  The coverage will soon be posted on the UK Gout Society website.

“Rising burden of gout in the UK but continuing suboptimal management: a nationwide population study”: Chang-Fu Kuo, Matthew J Grainge, Christian Mallen, Weiya Zhang, Michael Doherty available here in pdf format.

ARMA Networks

 

Warm Water Exercise initiative

Warm Water Exercise initiative

In 2010 a number of stakeholder meetings were organised by the Betsi Cadwaladwr University Health Board (BCUHB) to ascertain views regarding the re-development of part of Llandudno Hospital.

Fortuitously, a member of the Conwy Long Term Conditions Physical and Sensory Disability Group, who was also a member of North Wales Arthritis and Musculoskeletal Alliance Network Group (NWARMA), had been invited to participate in discussions. As the possibility of hydrotherapy facilities within the redeveloped site had been rejected previously, the member asked about the possibility of an initiative involving the North Wales Health Board and Conwy County Borough Council Leisure Services.

Receptive senior officers from both organisations together with National Exercise Referral Scheme co-ordinator (NERS), Conwy took up the challenge and ‘the rest is history’. The pilot initiative is documented in “A Rapid Health Impact Assessment of the Warm Water Modality Pilot Scheme, Conwy” produced by Wales Health Impact Assessment Support Unit, Public Health Wales (dated November 2011). You can see the assessment here online.

Since then the initiative in the Conwy Borough Council geographical area has continued at one suitable pool and is highly regarded. An initiative in Denbighshire has also been proposed.

The results of a questionnaire to NERS co-ordinators in north Wales, which was developed and circulated by NW ARMA in 2013, highlighted that there were two major factors in the lack of development of such initiatives in other counties: namely the inflexibility and size of the swimming pools and the prohibitive cost of increasing water temperature to the desired level.

The value of such long term exercise for people with arthritis and chronic musculoskeletal conditions (MSD) in a warm water environment which is affordable and accessible cannot be underestimated.

It is therefore of the greatest importance that future leisure facilities are designed with flexibility in mind. Full involvement of support groups such as ARMA Network Groups and Musculoskeletal Community Support Groups in design development is vital.

The opportunities for people with MSD to access NHS Hydrotherapy facilities on a long-term, regular and frequent basis is becoming less common. The cost of private facilities can be £20 for a 30-minute session which is way beyond the means of most people with chronic MSD.

Inaction is not an option!

Arthritis Care Scotland lecture at Holyrood

Arthritis Care Scotland lecture
at Holyrood

Arthritis Care Scotland is holding it’s first professional lecture on February 5th 2014 in the Scottish Parliament building at Holyrood.

The event will be chaired by Dr Alan Macdonald, Chair of the Scottish Society of Rheumatologists,
and the speakers will be:

  • Dr Duncan Porter on ‘ReMission Impossible? Early intervention in RA’
  • Dr Martin Perry on the Scottish Public Health Network Needs Assessment on RA
  • Professor Martijn Steultjens on “Turning back the tide of MSK pain”
  • and Arthritis Care Scotland director, Angela Donaldson, on the patient’s perspective.

Further information from Arthritis Care Scotland: scotland@arthritiscare.org.uk.

EULAR

EULAR PARE e-Breakthrough newsletter

EULAR PARE e-Breakthrough newsletter

First issue of 2014

On behalf of Marios Kouloumas, Vice President, EULAR, representing PARE and Maria Batziou, Past Chair of the EULAR Standing Committee of PARE, I am delighted to share eBreakthrough-issue5-January2014 with you.

Our special thanks go to Diana Skingle, our new Chair of the EULAR Standing Committee of PARE, dedicated co-ordinator and designer of e-Breakthrough. And of course to all those who have contributed to make this issue an interesting and inspiring source of information. We hope that you will enjoy reading it - thank you for sharing it widely with your colleagues.

If you would like to see one of your activities featured in one of our next issues please do not hesitate to get in touch. We hope you all had a good start into 2014 and wish you a healthy and happy year.

Birte Glüsing
EULAR Project Manager

Spotlight On...

Integrating health and social care: a public health perspective

Integrating health and social care:
a public health perspective

Public Health England’s new document, Health and Care Integration, highlights the link between healthcare, public health and social care. It sets out how PHE aims to support the delivery of integrated care and includes some interesting case studies.

Turning the tide of inactivity

Turning the tide of inactivity

A very interesting new report by Ukactive underscoring the importance of physical activity, with strong links to health inequalities - and some echoes of the Global Burden of Disease.

Sign the PAIN UK Petition

Sign the PAIN UK Petition

This year's Pain UK Pain Champion, Jean Gaffin, has an e-petition to attempt to trigger a parliamentary debate to prioritise pain in the NHS.

Jean's "Championship pledge" asks for pain to be discussed, measured, treated and recorded at every appropriate patient contact. She has been working on this over the year attempting to raise the profile of pain within the Health and Care system.

Please sign the petition and encourage your members to sign it. Together we could make a difference and move pain up the health agenda.

ARMA Calendar

Policy Leads and Stakeholder Meeting                                              04 February 2014

Arthritis Care Scotland lecture, Holyrood                                       05 February 2014

Patients in Focus Awards entry deadline                                         07 February 2014

Acupuncture Awareness Week 2014                                                03 March 2014

NRAS Roadshow, North London                                                          12 March 2014

Clinical Network Meeting                                                                     18 March 2014

Policy Leads Meeting, Arthritis Care                                                 20 March 2014

Acupuncture Research Symposium, King's College London       29 March 2014

CEO Meeting, Arthritis Care                                                                01 April 2014

NRAS Roadshow, Bristol                                                                         02 April 2014

PMR-GCA Scotland AGM, Dundee                                                       17 April 2014

ARMA Board Meeting                                                                              24 April 2014

Naidex National, NEC Birmingham                                                  29 April-1 May

BSR Conference - Rheumatology 2014, ASC Liverpool                 29 April 2014

ARMA session at BSR Conference, ACC Liverpool                           30 April 2014

NRAS Roadshow, Leamington Spa                                                      14 May 2014

Policy Leads and Gold Partner Stakeholders meeting                   07 May 2014

Policy Leads Meeting, Arthritis Care                                                 17 June 2014

2014 Love Your Bones conference, The Mountbatten Centre    25 June 2014

NRAS Roadshow, York                                                                            25 June 2014

Commissioning Show, Excel London                                                  25 June 2014

CEO Meeting, Chartered Society of Physiotherapy                        08 July 2014

ARMA Board Meeting                                                                              18 July 2014

CEO Meeting, British Orthopaedic Association                               07 October 2014

2014 World Network Conference                                                        12 October 2014

ARMA Board Meeting                                                                              17 October 2014

BSR Autumn Conference                                                                       27 November 2014

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