July 2013

Director's Update

Dear all,

I hope you’re all enjoying the hot weather, which hopefully is still with us by the time this goes out…!

There are two things I want to focus on in my update this month.

Firstly, earlier this month I represented ARMA and the UK at the annual Bone and Joint Decade conference, where I ran a workshop on building an effective national action network (NAN) and presented on our MSK clinical networks project as a good example of a very practical project which is aimed at effecting real change and which also brings our diverse community around the same table. Both were extremely well-received. It was very interesting to see how despite significant differences, all other NANs are facing similar challenges, chief of which is that of bringing all the different parts of the MSK community together to speak with one voice.

But the motivation is not lacking, and I left the conference feeling that there was much that ARMA had contributed over the three days in terms of injecting more purpose and substance into this global alliance. If on one hand ARMA is much more developed than most other NANs - and therefore there is perhaps more for us to impart than to necessarily “learn” from other NANs, though there are some great examples of successful initiatives coming from the likes of Kenya and Lebanon as well as more “developed” countries - there is also a real value in reminding ourselves that we are all part of a much bigger picture, and that we have many other colleagues around the world who are grappling with the same challenges and striving for the same goals as us. Insofar as our ultimate goal is to improve the lives of all those living with musculoskeletal disorders, there is an important role for ARMA to play in helping to strengthen efforts to do so across the globe as well as in the UK.

Secondly, the Commissioning Show, which I attended in June, has published all the presentations from its two days: see below for more information. From the sessions which I attended on the Wednesday, I would highly recommend watching Martin McShane’s presentation on the government’s long-term conditions strategy, Partha Kar’s presentation on the Super Six model and James Kingsland’s presentation on designing community-based services. There is a clear and very compelling common narrative to all three, which begins to form a clear picture of where the NHS in England is going. We’ve all heard it said that “we’re all on the burning platform” before, but what emerges from Martin McShane’s presentation in particular is a clear sense that there is a definite alternative to falling from the frying pan into the fire, if we are all prepared to genuinely face up to the challenge. It won’t be easy, but good things rarely are.

For all those taking time off during this time, have a great holiday, and may the good weather continue when we return.

Best Wishes,

Members' News and

Vacancy - ARMA Treasurer

Vacancy - ARMA Treasurer

The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK. ARMA consists of 40 member organisations, ranging from specialised support groups for rare diseases to major research charities and national professional bodies.

We seek to appoint a Treasurer to work with the Board and oversee all financial aspects of the charity’s operation to help secure its financial stability and future sustainability of the organisation.

This is an excellent opportunity for an individual with strong financial or accountancy experience and an understanding of the not-for-profit sector to join an exciting and growing charity. The Treasurer will be co-opted by the ARMA Board on a renewable yearly basis as an unpaid honorary post. Board meetings take place on a quarterly basis, lasting 3 hours, and you will be expected to give your time for 4 meetings as well as a half-day AGM, which is held on the same day as one of the Board meetings. You must also be willing to provide advice on an ad hoc basis. Reasonable expenses are reimbursed.

If you want to join the ARMA board as a treasurer and have the appropriate commitment and competencies, please view the detailed job description.

For an informal conversation please telephone 02078420910 or email armarecruitment@arma.uk.net

The deadline for applications is Wednesday 11th September.

Nurse and AHP Prize

Nurse and AHP Prize

Arthritis Research UK funds this annual prize in a number of categories including nursing, occupational therapy, physiotherapy and podiatry.  The winner of each prize will receive £1000 and a silver medal.

The deadline for submissions is Wednesday 27 November 2013

Arthritis Research UK also funds a generic prize open to any of these professions and this is awarded through BHPR, with the deadline to be announced shortly.

For nurses, occupational therapists and podiatrists - these three prizes are awarded based on a written piece of work of up to 4,000 words. The written piece of work must be original and in the field of musculoskeletal medicine. This could be:

•an example of good practice related to your field of work
•an audit
•an innovation
•a piece of research
•a research-based project

Please see arthritisresearchuk.org for the application form and more information on how to apply.

BSR Case Report Submissions

BSR Case Report Submissions


Share your interesting cases with your peers at the BSR Autumn Conference - please submit your case report online now. All case report entries go into the prize draw to win a free registration to the conference, plus two free flights from Heathrow to Edinburgh.

If your case is successful, you will

•get free registration for the conference (if you have already bought a ticket, we will refund you in full)
•boost your profile in the rheumatology community
•take home new ideas for your patients from world experts.

The best case report presentation and the best case report poster will be awarded a prize.

Topic areas:
■ Systemic lupus erythematosus
■ Scleroderma
■ Rheumatoid arthritis
■ Ankylosing spondylitis

To read full details of submission please visit the conference website.

Visit acupuncture.org.uk

Acupuncture Awareness Week 2014

Next year’s Acupuncture Awareness Week date will be 3rd-10th March 2014. We are looking into having musculoskeletal conditions as our theme for next year.

Go to www.introducingacupuncture.co.uk for more details of this year’s and next year’s events.


The British Conference of Acupuncture and Oriental Medicine 2013

This will take place at the Beaumont Estate in Windsor from 20–22 September.
Please visit the conference website for more information and to book.

You can follow the British Acupuncture Council on Twitter and Facebook and the CEO twitter account is  twitter.com/NickPahlBAcCCEO. Our website is www.acupuncture.org.uk

LUPUS News & Views 100th Edition

LUPUS News & Views 100th Edition

This month LUPUS UK is celebrating the release of the 100th edition of our News & Views magazine.

The magazine was first published by Cheryl Marcus in May 1979 for new ‘members’ of the British SLE Aid Group (now known as LUPUS UK). The full colour glossy magazine that members now receive has come a long way from this original typewritten edition, and over the years it has provided helpful and informative medical articles by clinical experts as well as sharing news within the lupus community.

All LUPUS UK members have now received their copy of the 100th edition.

You can see back-issues and samples of the magazine here, and if you are interested in receiving a copy you can join at www.lupusuk.org.uk

Portsmouth ARMA Summer Events

Portsmouth ARMA Summer Events

DaM it

The department of Rheumatology are pleased to announce that a new support group is starting in the Summer of 2013, called DaM it - a group for Dads and Mums living with arthritis and connective tissue diseases - a peer support network with face to face open discussion meetings. Click the image to open the flyer from the website.


Day-to-Day Living Well with Arthritis and Connective Tissue Diseases

Portsmouth Local Network are working with the Department of Rheumatology to host the 7th Day-to-Day Living Well with Arthritis patient and public conference, other ARMA Networks are invited to share this information with their members and can register as delegates with the attached form.


Individual Personal Care Plans - Myositis

Myositis UK working in Partnership with Portsmouth Hospital NHS Trust to develop an individual personal care plan for people living with myositis. The final draft has been presented at the Myositis UK Conference on Sunday 21-07-2013, if anyone would like to review and comment on the final draft version, please contact Julie Ingall 0239228 6142 or Julie.ingall@porthosp.nhs.uk.


Clinical Practice Event- Ankylosing Spondylitis

The 5th Clinical Practice Event – Ankylosing Spondylitis is to be held on 30th and 31st August 2013 in Portsmouth, the event organised by Portsmouth Hospital NHS Trust and Solent NHS Trusts is supported by Portsmouth ARMA Local network and National Ankylosing Spondylitis Society. The event is open to Health Care Professional with an interest in Ankylosing Spondylitis, looks at the theory and best practice for people living with Ankylosing Spondylitis. For more information please contact Valerie Robins 0239228 6000 ext 1495 email Valerie.robins@porthosp.nhs.uk

Quality Standard for Diagnosis and Treatment

Quality Standard for Diagnosis and Treatment

The NICE quality standard for rheumatoid arthritis will save NHS money and help thousands of sufferers

The National Institute for Health and Care Excellence (NICE) have today released the quality standard for the diagnosis and treatment of rheumatoid arthritis, guiding commissioners to support improvement in the quality of care for people with rheumatoid arthritis. Primary care initial cost savings are predicted to start at more than £3 million through reduced GP visits and reductions in unnecessary diagnostic tests. Overall, it could save the NHS £2 million per year. While achieving the standard may increase local costs at first, early referral will lead to savings in the long term – and improve the quality of life for the 422,000 adults it estimates to have rheumatoid arthritis in the UK.

With NHS services for rheumatoid arthritis previously having been designated as high priority for quality improvement, the standard will increase positive experiences of outpatient care and enhance the quality of life of those with long-term conditions.

The new standards indicate that commissioners should invest in rheumatology services so that people with rheumatoid arthritis can access the best quality care, get their condition under control, improve their quality of life and prevent long-term disability.

Currently, the resources allocated to rheumatoid arthritis vary across regions, meaning treatment for people with rheumatoid arthritis in England is inconsistent. Data from the National Audit Office shows only 60% of people who visit their GP with symptoms are referred to a specialist within three months of their visit. On average people with rheumatoid arthritis visit a GP four times before being referred.

The NICE quality standard and the Department of Health’s best practice tariff state that the time between GP referral to a specialist for diagnosis should be no longer than three weeks. Delays in treatment can have dramatic effects on patient’s quality of life: starting treatment with disease modifying anti-rheumatic drugs (DMARDs) within six weeks of referral is critically important. However evidence shows that many people wait over three weeks to be assessed by a rheumatology service.

Continue reading online.

Scotland - We Are Not Too Young

Scotland - We Are Not Too Young For Arthritis

Arthritis Care Scotland, in partnership with NHS Fife Rheumatology department, were awarded funding from the Scottish Government ‘Better Together – The Patient Experience’ fund, to consult with young people about what it’s really like to live with arthritis at such a young age. Young people, their partners, relatives and carers took part in a consultation survey to find out what the main issues were about support, services, experience of being a patient, medication, transition from child to adult services and also emotions.

As part of the consultation, young people with arthritis, Arthritis Care Scotland and Alan Wyllie of Cactus ID Films, produced a fantastic film about the realities of living with arthritis. The young people were amazingly open and honest about their experiences, which included talking about some very sensitive issues. The film was launched an d introduced by the young people, alongside the consultation report o n the 5th June at Stirling Management Centre, to health professionals and other key stakeholders within health and social care.

To view this film check out http://www.youtube.com/watch?v=2PvEuCEbGew (may not load in some browsers)

The film will be available to view on Arthritis Care Scotland’s new website, which will be launched in July 2013. Well done to everyone involved– especially the young people, who are true superstars! For more information, contact melaniem@arthritiscare.org.uk


Arthritis Care Scotland are re-designing their ‘CONNECT’ website

Funded by the Scottish Government, the pilot for the first Connect website was launched on October 2011 at Scottish Parliament and aimed to be the gateway for information about arthritis in Scotland, including creating communities of bloggers, forums and a one-stop-shop for health and condition related information.

A great deal was learned from the pilot stage and now Melanie McLean, Arthritis Care Scotland’s Events & Communications Officer, is leading the re-design project alongside the Scotland team, which sees the soon-to-be-launched site being more accessible, jam packed with news and features about arthritis, living with the condition, real-life stories from people of all ages who have arthritis, patient opinions, as well as all the latest developments at Arthritis Care Scotland, their projects and services, and how they can help.

Melanie is currently looking for people who would like to share their true life stories about living with arthritis and would also like to hear from other organisations who provide services for people with arthritis and related conditions. For further information contact Melanie at melaniem@arthritiscare.org.uk.

HMSA Move Apace with a New Name

What’s in an ‘S’?

In July 2013, The Charity Commission has approved a change to the name of the HMSA, which now becomes the Hypermobility Syndromes Association.

Dr Hakim, Chief Medical Advisor, said on behalf of the Charity’s Trustees:
‘Hypermobility and the problems related to it can affect many people in a number of different ways. It is associated with several conditions including the Joint Hypermobility syndrome, Ehlers-Danlos syndrome, and Marfan syndrome. Although there are important and very specific differences between these conditions, in many respects the advice and treatments needed are similar. Recognizing this, our change in title reflects the HMSA’s aim of supporting all those with any hypermobility-related condition.’

Donna Wicks, Senior Medical Liaison Officer, stated:
‘The change described above also reflects the changing needs of our members. Many members with Sticklers, vascular or classical EDS and Marfan syndrome, have joined over the last few years, despite the HMSA primarily representing the Joint Hypermobility syndrome (also known by some as Ehlers-Danlos Hypermobility type).

Members stated they were joining because they liked the positivity of the charity and the biopsychosocial model we adopted in helping people to understand and manage their conditions. The Hypermobility Syndromes Association has also produced a new website (www.hypermobility.org) reflecting the changes we have made in working with people from all the Heritable Disorders of Connective Tissue and other hypermobility problems. The website has been widely accepted positively but is dynamic and new pages reflecting the needs of the members and professionals working with the same patient group are constantly being created to Information Standard.’


The HMSA 2014 Conference “Move, Pace, Keep Active”

The HMSA is pleased to announce its 2014 Residential Conference, from Friday evening 25th- to Sunday afternoon 27th July, at the Hilton, St Georges Park, Burton-Upon-Trent, home of the National Football Centre. The theme is ‘keep active’. This weekend is aimed at all people who have a Heritable Connective Tissue Disorder or one of the Hypermobility Syndromes. There is separate timetables for adults/parents and children as usual within the theme of the weekend. The programme will include practical talks from experts, activities including use of hydrotherapy facilities, advice sessions with therapists, and of course time for relaxation and socializing with members, staff, and advisors.

Details of the programme and pricing will be published soon, along with access to the conference booking form. There will be the opportunity to book day passes for the Saturday or Sunday or both if unable to attend the whole weekend or weekend accommodation is not required. Also, delegates will be able to pay in advance by instalments – Terms and Conditions apply. Priority bookings will be for HMSA Members but non-members can apply as we have kept a limited number of spaces. Please contact Donna Wicks admin@hypermobility.org for priority bookings.

Six NRAS news items for July

Rheumatoid Arthritis Awareness Week

The 24th to 30th June was the UK’s first ever RA Awareness Week and NRAS was absolutely delighted with how well it went. Rheumatology units and NRAS members all over the UK hosted information stands and between us we really managed to draw attention to RA and break some of the myths that exist. The YouTube video – Katy’s Journey – was viewed over 10,000 times and the four infographics (facing the facts, storyboard, symptoms and mythbuster) were shared widely across a range of social networks.

It’s not too late to sign our e-action campaign and write to your MP, MSP or AM asking them to sign an Early Day Motion, or equivalent in the Scottish Parliament and Welsh Assembly.

Thank you to everyone who showed their support during the week and for playing your part in raising awareness of rheumatoid arthritis. The next RA Awareness Week will be held from 16th to 22nd June 2014 so make sure you put that date in your diary.

New PIP booklet

NRAS have produced a booklet for people with RA on how to claim Personal Independence Payments (PIP). This comprehensive guide looks at every aspect of the PIP claim forms and includes information on what to include for each section, as well as giving information on the scoring system that is used.

It also includes tips on writing a diary about your condition, the process to follow if a claim is turned down and useful contact details for further support. The publication is currently being finalised and will be available to view or order through the publications section of the NRAS website, or by calling NRAS on 0845 458 3969.

PIP 20m rule

Sign the DBC letter to David Cameron and Nick Clegg about the PIP 20m rule

The Government has announced that it will look again at the criteria for the mobility component of Personal Independence Payment (PIP). The Disability Benefits Consortium are writing to David Cameron and Nick Clegg to raise our concerns at the changes, including the introduction of the 20 metre qualifying distance for the enhanced rate of the benefit. We believe this could cause large numbers of people to miss out on fundamental support.

Please join us in writing to David Cameron and Nick Clegg about the 20 metre rule. The more people sign, the stronger chance we stand of challenging the policy and the process will take less than two minutes. Visit our website here to read and sign the letter.

Share the Disability Benefits Survey

NRAS and the Disability Benefits Consortium have joined forces to launch a major disability benefits survey. We want to know more about peoples’ experiences of the benefits system so please consider sharing this survey so that as many people as possible can provide their views and experiences. This is a great opportunity to inform our work so we can influence Government benefits policy and support our campaign to battle benefit cuts. The survey can be found here.

Read two further NRAS news items online.

Visit Arthritis Care's website

New services from Arthritis Care

In July, Arthritis Care chaired a seminar looking at improving the commissioning RA services. Supported by Roche, it attracted stakeholders, including NRAS, and Peter Kay, the NHS England’s MSK Clinical Director. It included a presentation undertaken by MHP Mandate into how RA is being prioritised by CCGs and Health and Wellbeing Board strategies.

The discussion explored how the incentives in the new system can be used to deliver improved care.  The output will be a short support pack for commissioners to assist them in commissioning high quality RA services.

Health service development - Arthritis Care in Northern Ireland, along with other groups from the Long Term Conditions Alliance NI, has taken part in a meeting with DHSSPS officials to discuss the setting up of 17 new Integrated Care Pathways (ICPs). ICPs will monitor the delivery of local services, with an initial focus on specifics topics, e.g. the frail elderly, and will involve user representatives. 


At present, Arthritis Care are developing a range of new services across England, including:

  •         Arthritis Champions – face to face peer support, information and signposting, provided by volunteers, at all stages in a patient’s disease journey. The volunteers champion the needs of the individual and those of the community, through patient involvement and Healthwatch. Arthritis Champions are being piloted in Warrington and Chester.
  •         Joint Approaches – a volunteer led self management programme, using a modular approach to support people with arthritis to improve their quality of life. JA offers a flexible self management programme. JA is currently being piloted across Central England, with more planned for September.
  •         Chat 4 Change –group-based telephone self management support, facilitated by volunteers. Participants register to be part of a group, and are led through a number of telephone calls where elements of self management are discussed, e.g. diet & exercise. Facilitators guide the discussions, ensuring that participants share good practice and helpful information. Volunteers are currently being trained, for courses due to start in September.
  •         A peer support project – currently being piloted at Queen Elizabeth Hospital in Gateshead. Volunteers offer peer support at manned drop – in points within the hospital. Volunteers have just been recruited, and funding has just been secured to run the service in four more health venues in the north east of England.


EULAR e-breakthrough newsletter

EULAR e-breakthrough newsletter

A Special Issue of the PARE e-Breakthrough newsletter was published this week, featuring reports from the EULAR Congress Madrid.

It comes on behalf of Marios Kouloumas, Vice President, EULAR, representing PARE, and David Magnusson, Chair of the EULAR Standing Committee of PARE,  the PARE Board and the EULAR PARE congress Task Force 2013. Special thanks for tis production go to Diana Skingle, PARE Board Member and dedicated co-ordinator and designer of e-Breakthrough.

The planning for 2014 is in full swing - it would be great to receive your feedback for 2013 if you have not yet filled in the EULAR evaluation form on survey monkey - please follow the below link:


Policy Items

Local Government Reference Group: Community Member

Local Government Reference Group: Community Member

NICE are currently seeking applications from members of the public with experience of social care services and understanding of the role of local government.

The Local Government Reference Group advises NICE on the preparation of briefings on a range of public health and social care topics. The briefings contain advice on cost effective and evidence based actions which local service providers can choose to use depending on the local priorities and needs of local communities. 

Members of this group will play a key role in making sure that the views of patients and their carers and their experiences and interests inform the development of the guideline and recommendations to the NHS. The lay members are paid an attendance fee to attend these meetings and travel and hotel costs are covered too.

Jessica Fielding, Public Involvement Adviser for NICE, would welcome an application from you if you have:

1) Recent experience (within the last 5 years) or knowledge of social care services (ideally both children’s and adult services) and an understanding of issues important to those who require these services. For example as:

  • someone who has experience of using social care services or
  • a family member or unpaid carer of the above person or
  • someone who has been involved in activities or groups to develop or improve social care services for a community or specific group of people or
  • who is a member or officer of a relevant community or voluntary  organisation

2) an understanding of, and a willingness to reflect, the experiences and needs of a wide group of people using social care services (gained for example through networks with other service users or carers, or membership of a support group, community group, voluntary organisation, or service user forum)

Information about the recruitment process and all necessary forms can be found here.


The Centre for Public Health are also recruiting separately for ‘professional’ member (local authority senior manager and professionals working in social care or those elected member of a local authority with responsibility for adult or children’s social care or an interest in health and wellbeing). You can view the recruitment page for professionals here.

The closing date for applications is Sunday 15 September 2013.

Please see the NICE Get Involved webpage for all current lay opportunities available, and contact Jess if you have any queries.


Read this post online.

Spotlight On...

The Commissioning Show has released its 2013 presentations online with highlights from the 12th-13th July 2013 event.

You can now browse this year's programme and select videos of the speeches.

ARMA Calendar

Public Health England Annual Conference                     10th-11th September
IMID Summit: Let's Talk Health!                                        12th-13th September
Policy Leads and Stakeholder meeting                              19th September
RCGP Annual Conference                                                      3rd-5th October
BSR Autumn Conference, Edinburgh ICC                        3rd-4th October
Future of Health Conference, London                                3rd-4th October
CSP Conference                                                                         11th-12th October
ARMA Board Meeting                                                             17th October
ARMA Annual General Meeting                                          17th October
World Osteoporosis Day                                                          20th October
ARMA CEO Meeting                                                                 31st October
PCRS Conference                                                                       21-22 November
NHS Alliance                                                                             27-28 November

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