October 2012

 Director's Update

Federico Moscogiuri, ARMA Director

“Fail to plan, plan to fail”
“No plan survives contact with the enemy”

Two oft-cited statements on planning, invoked by various people in various circumstances. Both true. Somewhere in between the two extremes of meticulous planning and a fundamentally ad hoc (some might say "Lansleyan") approach lies a balanced, genuinely strategic approach. A plan is required, but it must be flexible if it is to be workable. And this principle must guide ARMA, as we move one step closer to producing our first 3-year strategic plan, from 2013. This is going to be an important point of reference for all of ARMA’s work in the short and medium term, and will therefore once again take centre stage at our next CEO meeting on 25 October.

Accompanying the strategic plan is a new ARMA Manifesto, which aims to capture who we are and what we’re calling for on just two sides of A4. We will be officially “launching” the Manifesto this week, on 11 October, just ahead of World Arthritis Day (12 October), and we will be encouraging all our members and supporters to help us raise awareness of it via Twitter and other social media channels – watch this space!

We are also proactively engaging with the wider debates in healthcare, not least around what it means to deliver integrated care and patient-centred outcomes. Back in August, I co-wrote a piece for GP Magazine with Dr. Alan Nye on managing musculoskeletal disorders in primary care, and Nursing Times are soon to publish a similar piece by Vicky Chamberlain (RCN) on behalf of ARMA. We also continue to use every opportunity to influence on behalf of our stakeholders via national bodies such as National Voices, who have recently moved into the same building as us – they’re sitting outside my office as I write.

Two weeks ago I attended a very useful seminar on integration organised by National Voices and the NHS Commissioning Board. In the same week, I attended a Stakeholder Engagement Event at South Lincolnshire CCG, and the yearly IMID (immune-mediated inflammatory disorders) Conference, which this year took place in London.

Looking ahead, the big event in the ARMA calendar for the rest of the year is the ARMA lecture, which will be given this year by the NHS Commissioning Board’s lead for long-term conditions, Dr. Martin McShane, and will take place at the Royal College of Obstetricians and Gynaecologists.  The lecture itself will be followed by a panel discussion which will include at least one other big name, and we are expecting a good turnout for what is shaping up to be a very exciting event.

Friday 26 October is the day of ARMA’s 2012 AGM, and this year we will be joined by Prof. Tony Woolf, who will be speaking to us about the Bone and Joint Decade. It is in fact still something of a little-known fact that ARMA is the UK’s National Action Network for the BJD. As in previous years, ARMA will be participating in this year’s annual International BJD Conference - sharing knowledge and gaining knowledge - from 30 Nov – 2 Dec.

Coming up soon is also the EULAR PARE conference, taking place in Zurich between 2 - 4 November. ARMA will be represented this year by Sarah Wallace from NRAS and Tom Cassidy from NASS.

You may have noticed that both this newsletter and the ARMA website have a new look and feel. Both are still a work in progress, but our web intern Garreth has done a great job already in improving them. Please let us know what you think.

I have yet to get used to it but I am trying to maintain a regular presence on Twitter.

Finally, I'd like to extend a warm welcome to our new members:
UK Gout Society
Myositis Support Group
Hypermobility Syndrome Association
RCN Society of Orthopaedic and Trauma Nursing

Thank you to everyone for your continued support,

Members' News and
Resources

News from NASS

New audit tool for rheumatology departments

NASS has launched a new audit tool for rheumatology departments to assess their services for people with ankylosing spondylitis against the recommendations of the Looking Ahead report: Best practice for the care of people with ankylosing spondylitis. Based on a RAG system (red, amber, green) rheumatology departments will be able to identify the areas where they are performing well and areas where they could look to make improvements. The initial feedback since its launch has been incredibly positive.

NASS en Masse

NASS completed its NASS en Masse tour of duty around the UK raising awareness of AS with the final event in Cardiff last Saturday. More than 600 people took part in sponsored walks and family fun days in 7 venues around the UK including the BSR’s own President, Dr Chris Deighton. Dr Deighton joined NASS Director, Debbie Cook, in the Derby walk earlier this month. The events also raised around £20,000 towards our Inflammatory Back Pain Campaign for GPs.

Raising awareness of IBP

The NASS GP Campaign has been gathering momentum throughout the year with AS hitting the hot topics list in the spring and autumn series of NB Medical GP conferences, many with a NASS stand, and reaching out to more than 10,000 GPs. Work on this campaign will continue well into the next year to ensure that inflammatory back pain is better recognised by GPs with swifter referrals to reduce the long delays in diagnosis and access to treatment.

A New Guide

NASS is also delighted to offer the new educational guide ’Differentiating inflammatory and mechanical back pain’ for health professionals who would like to learn more about the differences between inflammatory and mechanical back pain. The guide, which was developed by leading rheumatology physiotherapists and supported by an educational grant from Abbott, is available to download from the Resources for Health Professionals page on the NASS website.

Read online.

Pain Management Guide

The medical research charity Arthritis Research UK has launched a new self-help guide aimed at people with long-term musculoskeletal pain.

The guide explains the different types of pain, where people can get treatment and advice such as pain management centres and clinics, and has sections on specific treatments and therapies such a cognitive behavioural therapy and other psychological therapies and physical rehabilitation approaches.  There is also an interactive section which outlines ways in which people can manage their pain themselves, encouraging them to complete pain diaries and set achievable goals.

You can read the guide on the ARMA site here, or you can read more about the project and access the PDF via the Arthritis Research UK website.

Read online.

Striking New Lupus Poster

Many lupus patients have no visible symptoms and this can mask the serious impact of the condition.

This October for Lupus Awareness Month we have released a brand new poster and media release to challenge people’s ideas of illness and disability. The powerful image was designed by lupus patient Karen Fox as part of a university degree course. Please click on the picture to see the striking full-size poster.

Following on from our video short last May for World Lupus Day, we have also just released a short animated video to help improve understanding of lupus. Please look out for it on the lupusuk.org.uk site.

Read online.

BSR News for October

  INSPIRE

BSR is delighted to be able to announce the launch of INSPIRE, a website jointly developed between BSR and PCRS for the benefit of primary and community care in rheumatology. The new web site was launched at the Royal College of Physicians conference on Integrated care the 13th September. To mark the web site launch, an easy to access one page set of guidelines for GPs in managing gout was also launched  produced in  collaboration between Louise Warburton President PCRS, Christian Mallen Keele University and Chris Deighton President BSR. It is anticipated this was be the first of a long line of collaborative projects aimed at integrating care across both primary and secondary patient pathways.

QIPP

September also saw a successful QIPP workshop in Sheffield funded and facilitated by BSR and the Right Care team from the Department of Health (DH). QIPP is an initiative from the DH and stands  for Quality, Innovation, Prevention and Productivity.  Sheffield Hospital presented their Clinical Microsystems work in Rheumatology that both reduced administration costs and improved patient waiting times.  Sheffield and BSR were shortlisted for the HSJ national awards for the initiative. The workshop aimed to share the learning from the modernisation techniques across primary and secondary care in order to improve patient outcomes. The outcomes from the workshop will be written up on the DH web site.

Launch Learning Pilot

October sees another launch, this time of the BSR e learning pilot that supports doctors revalidation and awards Continuing Professional Development points on completion of the module. During the 6 month pilot comments and suggestions’ are welcome, work is almost complete on up to a 100 modules that will be added to the e-learning site. This is an exciting initiative which it is hoped can expand to other areas.

Phone App Coming

Chris Deighton President of BSR and Colin Howie BOA jointly Chair an advisory group on another DH project , developing a  Patient Decision Aid (PDA) phone app for rheumatoid arthritis. There is input from patient organisations such as NRAS and the intention is to have the phone app ready by January.

National Voices

BSR warmly welcomes National Voices to the BSR  headquarters on the first floor Bride House and looks forward to sharing coffee and cakes on a regular basis.

Read online.

The Scleroderma Society is recruiting

It is a very exciting time at the Scleroderma Society and we are currently recruiting two positions:


Executive Administrator£26-£28,000 pro rata21 to 28 hours per week

FundraiserTo £32,000 pro rata21 to 28 hours per week

All the details can be found at our website on our job opportunities page. Both roles will be based at the BSR offices, 18-20 Bride Lane, London, EC4Y 8EE.

Follow us on Facebook

Follow us on Twitter

Scleroderma UK Website

Read online.

PSALV's Public Meeting

Scotland’s patient-led registered psoriasis charity, PSALV, Psoriasis Scotland, held a Public Information Meeting on Saturday 15th September 2012 at The Park Inn Hotel, Aberdeen.

There were presentations by leading medical speakers from local hospitals: Dr Tony Ormerod, Dermatology, Aberdeen Royal Infirmary and Dr Alan Macdonald, Rheumatology, Aberdeen.

The event was a huge success, attended by 55 people including MSPs Nanette Milne and Kevin Stewart.

Read online.

New Deal from NRAS

The National Rheumatoid Arthritis Society is developing a new ‘responsibility deal’ for people with rheumatoid arthritis (RA) and for healthcare professionals and policy-makers involved in making the decisions that affect the services and care people with RA receive.

The survey has now closed and the results will be released on 12th October 2012, to coincide with World Arthritis Day. Please visit the NRAS site on the day for the results.

Read online.

NRAS Group Launch

New NRAS Group launched in Dorchester

Last Wednesday NRAS hosted a Rheumatoid & Inflammatory Arthritis Information Eventat the Dorchester Baptist Church.

Read online.

Needs Assessment Report & ARMA Scotland

Report: Health Care needs

The Public Health Institute for Scotland (SCOTPHN) has published an important needs assessment report on rheumatoid arthritis. The report, entitled ‘Health Care needs assessment of services for adults with rheumatoid arthritis’, was developed with input from ARMA and ARMA members including Arthritis Care and NRAS.

The key priorities to emerge from the report include:• The need to shift practice towards early diagnosis and treatment; • Ensuring the appropriate management of chronic disease; • Access to the multidisciplinary team (MDT); • 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.

The Scottish government’s response is due in mid-October. The ScotPHN report may lead on to a wider needs assessment for other forms of arthritis and MSK. The full report is available at: scotphn.net.

Scotland MSK Programme

ARMA Scotland Chair Steve McBride is now representing ARMA on the National MSK Programme Board. The pilot for the triage programme in Lanarkshire is now well under way, those in Lothian and Ayrshire and Arran are due to start in October.

Read online.

RCN Rheumatology Forum update

RCN Rheumatology Forum conference: date announced

The next RCN Rheumatology Forum conference will be held in the City of Edinburgh. The theme is ‘Leading the Way’ and more details will be announced soon via the following link: event details

We will be offering a varied programme, ideal opportunities for networking and an interesting exhibition. The conference is aimed at any nurses/AHP’s who have an interest in Rheumatology, with sessions for both the novice and experienced practitioner, so please save the date: 21-22 February 2013.  Come and join us!

Update of subcutaneous methotrexate guidelines

These valuable guidelines have been in use for some years now. The Forum have developed a task and finish group lead by Lisa Howie, Rheumatology Practitioner from Wales, to look at these in details. It is hoped that the updated document will be published next April in time for BSR/BHPR.

Telehealth/use of multimedia for patient care

The RCN have published a number of documents on how to best use technology in patient care. This includes the use of telephone advice lines, text messaging and telehealth. These are available via the link here.

Read online.

Tariffs & Measures - ARUK

Best practice tariff

Best practice tariffs (BPT) are a way of creating a financial incentive for specialist health service providers to deliver a higher quality service. Arthritis Research UK, together with the BSR and with input from NRAS, has worked with the Department of Health to develop a proposed BPT for early inflammatory arthritis. Under the proposal, enhanced payments would be made for rapid assessment and appropriate treatment of people referred with suspected early inflammatory arthritis. The proposal is based on NICE guidance, and aims to increase the proportion of people with early inflammatory arthritis who begin treatment within 6 weeks of GP referral. The proposed BPT has been shortlisted for inclusion in the 2013/14 round, and is now under internal NHS consultation as set out in this letter to the NHS from David Flory.

Patient-reported outcome measures

On 13 July, Arthritis Research UK hosted a community discussion on musculoskeletal patient-reported outcome measures (PROMs) in Birmingham. The discussion was attended by local people with arthritis, national charities representing people with arthritis, professional-representative organisations including BOA, BSR and CSP, researchers, the Department of Health and the NHS Information Centre. The report of the meeting is now published, and a summary was recently presented to the Department of Health Special Advisory Group on PROMs. Next steps include establishing reference groups and building on existing work to agree the scope of the research project with the lead research institutions.

Read online.

Musculoskeletal calculator

At the ARMA Clinical Networks meetings this spring, Arthritis Research UK outlined how the Musculoskeletal Calculator would be produced to build on the epidemiological research, knowledge and expertise that it has funded and developed to date. The calculator will produce reliable estimates of local population musculoskeletal health burden and need for a range of musculoskeletal conditions, including those looked after in primary care and specialist care; by physiotherapy, orthopaedics and rheumatology.

There have been a number of discussions with public health experts and research teams exploring the scientific methodology and practical delivery issues. Discussions are underway with members of the rheumatology commissioning support alliance (RCSA) to explore how the information produced by the calculator can enhance the work of the RCSA in supporting local commissioners.

Read online.

World Arthritis Day

At the time of writing this, almost 50,000 people have already waved for World Arthritis Day. There is still time, so please join in; the more people that ‘wave’ the more impact the campaign will have. Below is a picture of the ARMA Policy Group waving.

You can find out more about the various WAD events taking place around the world at www.worldarthritisday.org

NASS on World Arthritis Day

 

NASS is celebrating World Arthritis Day this year with the return of Stretch for NASS to celebrate our branches and their physiotherapists who provide the regular hydro and gym sessions for people with AS in more than 80 locations around the UK. There will be a special ‘Big Bath Stretch’ at the Royal National Hospital for Rheumatic Diseases on Thursday 11 October 2012 with talks from consultant Rheumatologist, Dr Raj Sengupta and Nass Director, Debbie Cook followed by a stretching activity. NASS members and branches will also take the opportunity to capture their waves for World Arthritis Day at the same time.

Coinciding with World Arthritis Day NASS will be holding  a research event at Lancaster University to discuss and prioritise some of the key research questions we need to address to improve services and increase our understanding of the management for AS. The ideas generated from the day will then be used by NASS to inform a national consultation with NASS members which will then inform the production of a formal research strategy.

And on World Arthritis Day, Debbie will be addressing healthcare professionals attending the Abbott ARENA event in Portsmouth.

 

Read online.

Bone and Joint Decade

BJD on World Spine Day

World Spine Day 2012

BJD are currently in the process of coordinating activities for World Spine Day (WSD) October 16, 2012 and we are writing to request your input.

These activities include development of:

  • a WSD website, and
  • a toolkit containing resource materials. 

The theme will be related to posture at home, work and play; the hope is for the website to be a resource for NANs and other organizations and will include a toolkit with activities, educational resources and press releases which can be used when planning and promoting WSD activities in your respective regions.

If you have resource materials that you have used in the past and would like to share and that could potentially be included in the toolkit please send us an electronic copy or a link to website-based information.  For example, the Straighten Up and Move program, endorsed by the WHO, includes exercises for promoting spinal health: www.straightenupamerica.org and will be available for NANs to use in their own local activities.

We would also like to hear what you have planned for WSD 2012 so that we may share the information on our website.  Through the collection of these resources and the generation of new ones, we hope to help support NANs in their promotion of World Spine Day.  In the near future our World Spine Day website will be up and running and populated with these materials.

Please forward resources and information to Dr. Jennifer Nash, Special Projects Coordinator for World Spine Day at jnash@wfc.org as soon as possible, and by July 31 at latest. 

Thank you in advance for your input and support for WSD 2012!

Sincerely,

Dr. Jennifer V. Nash                                                                      Dr. Deborah Kopansky-Giles

Special Projects Coordinator, World Spine Day                                BJD International Coordinating Council

Read online.

Policy Items

Drug Driving

NRAS have set up a petition to exempt patients taking prescription medication from the provisions of the Crime and Courts Bill on drug driving. Find out more.

Work Capability Assessment (WCA)

The WCA is the assessment for Employment Support Allowance. A proposal to produce an alternative WCA that is much more fit-for-purpose is being discussed by ARMA’s policy group. The proposal has the backing of the Disability Benefits Consortium and reflects continued dissatisfaction across the sector with the current assessment regime and the DWP’s handling of the concerns raised to date. ARMA is considering practical means of supporting this proposal. If anyone is interested in becoming involved, please contact projects@arma.uk.net.

Spotlight on...

In this section we will highlight websites and resources which may be useful or of interest to our members and supporters. If you would like to suggest any to us, please email projects@arma.uk.net.

Pilotlight

Some of our smaller members in particular may find this useful. Pilotlight is a charity which manages teams of senior business people to coach other charities through the process of building measurably more sustainable and efficient organisations.

My Choice, My Care

This is a website I learned about at the CCG stakeholder event in South Lincolnshire. It is aimed at Lincolnshire residents, but it provides an interesting and possibly useful model for how local authorities can provide information to support people in remaining independent and making informed decisions about their care.

ARMA Calendar

CEO meeting:   25 Oct
ARMA AGM:   26 Oct
ARMA Lecture:   21 Nov

  Please starting thinking about sending your items for inclusion in our next
  ARMA newsletter, which we aim to publish mid-November.