November 2014

CEO's Update

Dear all,

November’s been another eventful month for our community and our growing membership, with an exciting few months ahead of us.

Firstly, I’m delighted to welcome our latest member organisation, Arthritis Action, taking our total number of members above 40 for the first time ever.

The fact that our Alliance is not only in good health but gaining in influence and profile is reflected, among other things, in a series of recent and upcoming meetings and events.

Many of you attended the BJD Conference and MSK World Summit last month. I’m pleased to say that ALL of the presentations from BOTH days, as well as the discussions from Summit itself (Monday 13th) are now available on our website. Please have a look if you were unable to attend, and do encourage your own members and stakeholders to visit and listen to the presentations. Our BJD Conference & MSK World Summit pages constitute a useful resource for anyone with an interest in MSK, and are capable of lasting the test of time. As I wrote last month, this was a very successful event which really helped to put MSK “on the map” and raised the bar for ARMA and the MSK community in the UK.

If you have not done so yet, please also sign the BJD’s Call for Action – this will give the global MSK community, and us as the UK contingent, the “ammunition” for raising the profile of MSK internationally with key organisations like the World Health Organisation, as well as nationally.

Last week I chaired the first meeting of the National Working Group on MSK Workforce, one of the key priority areas identified by our ongoing clinical networks project around which ARMA is facilitating the coming together of expertise from across the various professions and condition areas in England. The only other NWG which hasn’t met yet – focusing on Integrated, community-based care – is meeting next week.

On Weds 10th December next week, from 5:30pm, ARMA is hosting its sixth annual lecture, and we’re delighted to have Lord Hunt of Kings Heath, Labour Shadow Health Minister, as our keynote speaker. Please email projects@arma.uk.net if you’d like to attend but haven’t replied yet.

We are also delighted that Dr. Sarah Wollaston MP, Chair of the Health Select Committee, is hosting a Parliamentary reception for ARMA on 26 January. The reception, which ARMA members have received an invitation to, will focus on delivering ARMA’s General Election Manifesto.

Before then, I will be meeting with Simon Stevens, CEO of NHS England, together with a number of other representatives from the membership of National Voices, who are organising this meeting. This will be another good opportunity to highlight some key recommendations from our Manifesto, among other things.

Finally, with input from our members’ policy leads, we have developed an ARMA benefits survey to complement the efforts of the Disability Benefits Consortium in this area, but with a specific focus on MSK. Please share this widely with your members and on social media. The survey will run until 31 January, but the intention is to make it a yearly survey. Thank you in particular to NASS and NRAS for their work on this, and for all who provided input.

As there will be one more ARMA newsletter before Christmas, I’ll save the Season’s Greetings to then!

Guest Blog - Care Planning and Musculoskeletal Conditions

by Laura Boothman,
Policy Manager at Arthritis Research UK

Planning is indispensable in many areas of life – we use it to manage projects, finances and time. Identifying goals, setting actions and discussing and sharing them with others can make us more likely to stick to our plans and achieve the outcomes we want. When it comes to planning to support our health, however, there is room for improvement; according to the latest survey data only 3% of general practice patients currently say they have a written plan.

From a policy perspective, it’s recognised that care planning, and other forms of self-management, will be an important part of future healthcare helping to address the growing burden of long-term conditions:

 

• The NHS’s recent five year forward view said “people with long term conditions, who tend to be heavy users of the health service, are likely to spend less than 1 % of their time in contact with health care professionals. The rest of the time they, their carers and their families manage on their own.” It asserts “… we will do more to support people to manage their own health – staying healthy, making informed choices of treatment, managing conditions and avoiding complications.”

 

• The NHS Mandate includes a specific objective for the NHS become “dramatically better at involving patients and their carers, and empowering them to manage and make decisions about their own care and treatment.” Since 2013, it has included the ambition that everyone with a long term condition will be offered a personalised care plan as one way of achieving this.

 

At Arthritis Research UK we have been considering the role of care planning for people with musculoskeletal conditions. Around 10 million people across the UK have a musculoskeletal condition, such as rheumatoid arthritis or osteoarthritis. These are mainly long-term conditions, and many people live with their painful and fluctuating symptoms for decades. Musculoskeletal health is an important contributor to overall health and wellbeing, and symptoms including limited mobility and pain can make the impact of other long-term conditions, such as diabetes, cardiovascular disease or depression worse.

It’s clear that there is huge potential and need for self-management and care planning by people with musculoskeletal conditions – but to what extent is this already happening? And how can we ensure that people with musculoskeletal conditions are included as these approaches are more widely implemented?

 

• The independent inquiry into patient centred care in the 21st century commissioned by the RCGP this week proposed that “… the greatest gains of care planning may come from those who are at an earlier stage of their condition, where there is greatest scope for prevention of deterioration.” It recommended that Practices should follow a personalised care planning approach for all those patients in need of proactive care, with particular focus on at risk groups such as those with learning disabilities and patients with multiple conditions.”

 

How do people with musculoskeletal conditions, or people with musculoskeletal conditions and other morbidities, fit into this wider spectrum?

Our care planning and musculoskeletal health report builds on the outputs of a policy workshop, interviews with people with arthritis and healthcare professionals who have used care planning, and reviews of policy, clinical guidance and musculoskeletal standards of care. It considers aspects of the care planning process as it relates to people with musculoskeletal conditions including the healthcare professionals involved, the settings in which care planning can take place, and indicators to help identify people likely to benefit.

 

Our analyses of national survey data indicate that, despite the Mandate commitment, just 12% of people with a musculoskeletal condition currently have a care plan. There is an opportunity for many more people to benefit.

The report calls for:

• Systems to deliver care planning to be designed to include those with musculoskeletal conditions and to identify and address musculoskeletal needs in patients with any long-term condition.

• Professional bodies to ensure that the continued training of healthcare professionals involved in care planning includes core musculoskeletal skills.

 

What is also evident is that the way people go about planning, and the types of plans they use, are as individual as the goals they want to achieve. To work well, care plans must be personal to us, in format as well as content. As one person I interviewed told me “it can give you a framework to build on – although it’s not one size fits all”.

For more information, or a copy of our report, please visit our website or contact us at policy@arthritisresearchuk.org.

 
Share and Comment online.

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Members' News and
Resources

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The RCN and BSR Joint Rheumatology Conference

The RCN and BSR
Joint Rheumatology Conference

Ideal for the whole rheumatology team
24 - 25 February 2015, Birmingham

This event is ideal opportunity for the multi-disciplinary rheumatology team, including nurse specialists, who are interested in leading the way in rheumatology and improving patient care.

The one and a half day conference will host leading experts in the field who will discuss topics such as shared decision making, biological updates and commissioning.

Book your place here.

Visit acupuncture.org.uk

BAcC at NICE Board and ETCMA

In November, the British Acupuncture Council (BAcC) was at a NICE Board meeting raising concerns about their evidence processes.

In December, the BAcC will be at a forum in Korea receiving comments on its advocacy toolkit for its European regional organisation, ETCMA.

The British Acupuncture Accreditation Board have recently refreshed their website at baab.co.uk, including new videos on becoming an Acupuncturist.

The BAcC will be at the All Party Parliamentary Group on Integrated Care in 10th December on "CAM in Universities".

FSEM moves to manage Osteoarthritis

FSEM moves to manage Osteoarthritis

The Faculty of Sport and Exercise Medicine (FSEM) UK recognises the importance of movement and exercise when it comes to managing Osteoarthritis. Evidence overall suggests that exercise is good for healthy joints.

The FSEM has produced a ten-point guide to Exercise and Osteoarthritis, including key points on exercise prescription for health professionals.

Osteoarthritis is a chronic disease affecting 8.75 million people in the UK, and more research is needed to fully understand the effects of exercise on Osteoarthritis.

AS it is – next steps launched

AS it is – next steps launched

Following on from the launch of the ‘AS it is’ campaign in 2013, where NASS successfully campaigned for Clinical Guidelines for Spondyloarthritis, NASS is now calling on NHS England to provide better access to physiotherapy for people with AS, access to an occupational therapist and help to stay in work where possible.

On 18 November, NASS was delighted to attend a reception at the Houses of Parliament. The event was hosted by Huw Irranca-Davies MP.

Read more about the next steps in the campaign from the National Ankylosing Spondylitis Society website.

New Arthritis Research UK report: Care planning and musculoskeletal health

New Arthritis Research UK report:
Care planning and musculoskeletal health

Arthritis Research UK has launched a new report on care planning and the impact it could have on people living with musculoskeletal conditions in the UK.

Many people live with the painful and fluctuating symptoms of arthritis and musculoskeletal conditions for decades. Musculoskeletal health is an important contributor to overall health and wellbeing, and symptoms including limited mobility and pain exacerbate the impact of other long-term conditions.

Care planning can enable people to self-manage their condition, and to identify actions they can take to improve their own health. Despite the NHS commitment to offer everybody with a long-term condition a personalised care plan, we found that just 12% of people with a musculoskeletal condition currently have one.

This report calls for:

• Systems to deliver care planning to be designed to include those with musculoskeletal conditions and to identify and address musculoskeletal needs in patients with any long-term condition.

• Professional bodies to ensure that the continued training of healthcare professionals involved in care planning includes core musculoskeletal skills.

Read the Press Release for the new report.

Arthritis Research UK’s policy and public affairs team is working to ensure that government policy meets the needs of people with arthritis and other musculoskeletal conditions.

For more on the report visit the policy section on the Arthritis Research UK website, or contact us at policy@arthritisresearchuk.org.

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EULAR

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Launch of Edgar Stene Prize Competition 2015

Launch of Edgar Stene Prize
Competition 2015

On behalf of Diana Skingle, Chair of the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) and Marios Kouloumas, EULAR Vice President, representing PARE, as well as of the Edgar Stene Prize Jury, EULAR are delighted to announce a call for entries for the Edgar Stene Prize 2015!

The title for this year’s submissions is:

‘Taking Control of my life, working together with health professionals to achieve my personal goals.’

As in the previous years, we will continue to accept the national winning essays in their native language to the EULAR secretariat and we will take care of translating them into English.

We also continue to ask you for information around the winning entries submitted to us in advance in order to have enough time to develop any material around the Stene Prize (e.g. the booklet).

For details and deadlines, please take a look at the Stene-Prize-Letter and Stene-Prize-Entry Rules.
If you should have any questions please do not hesitate to contact us.

We look forward to receiving many inspiring and encouraging essays from all over Europe!

Second anniversary of EULAR PARE e-Breakthrough

Second anniversary of EULAR PARE e-Breakthrough

With this 2nd anniversary edition of the e-Breakthrough newsletter, EULAR would like to thank all those who have contributed to make this issue and all the past ones an interesting and inspiring source of information.

We hope that you will enjoy reading Issue 7. If you might like to feature your own campaign or activities in e-Breakthrough, please do not hesitate to get in touch with Birte Glüsing at the EULAR Secretariat.

Happy reading and we look forward to seeing many of you soon in Zagreb!

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Spotlight On...

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I’m Still Me: a narrative for coordinated support for older people

I’m Still Me: a narrative for coordinated support for older people

The I’m Still Me document, developed by older people working with National Voices, UCLPartners and Age UK, sets out how coordinated – or integrated – care and support looks and feels to older people, written from their point of view.

“This new Narrative provides a framework to understand what matters most to older people, and how services can be designed around their individual needs. If we can get this right it will help to sustain the health, wellbeing and quality of life for everyone, regardless of age.”

Read more on the National Voices website.

Pain Toolkit and Self-Management in the Community

Pain Toolkit and Self-Management in the Community

At a recent presentation by Peter Moore aimed at assisting clinicians in helping people to live with persistent pain, he presented his Pain Toolkit, a simple information booklet that provides handy tips and skills designed to support people living with the condition.
Peter has lived with persistent pain since the early 1990s, but in 1994 he successfully turned his life around and now presents to patient groups and healthcare practitioners in the UK and EU on the subject of managing persistent pain.

 

He is currently petitioning the government to encourage NHS Primary Care & Social Care to provide more pain self-management in all communities:

 

Pain Self-Management in the Community & Internet

People experiencing pain in the community is on the increase, with 14million people reporting living with persistent pain here in the UK.

The best and most effective way to support people with pain is for NHS Primary Care (CCG's) and Social Care to develop simple educational pain self-management workshops/programmes in the community.

Also it would be useful for the NHS Primary Care (CCG's) and Social Care to utilise the Internet with more self-learning pain self-management information.

I hope you would sign this petition to encourage NHS Primary Care & Social Care to provide more pain self-management in ALL communities.

NHS England's scorecard Denies Access to Treatment for Ultra Rare Diseases

NHS England's scorecard Denies Access to Treatment for Ultra Rare Diseases

This campaign comes from the Society for Mucopolysaccharide Diseases, a voluntary support group and advocacy charity which represents children and adults in the UK suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases. Mucopolysaccharidosis is an enzyme disorder which affects a child's ability to build bone, cartilage, tendons, corneas, skin and connective tissue.

The MPS Society is encouraging people to sign a petition to government about funding for rare conditions.

The campaign aims to reinstate the Highly Specialised Services and ultra orphan drug appraisal process for children and adults with ultra-rare diseases that NHS England dismantled on 1 April 2013.

Read more about the drug appraisal and funding process from the MPS website, or sign the petition now.

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ARMA Calendar

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BIMM Winter Symposium – “Circle of Shame: non-specific back pain”       06 December 2014
Sixth Annual ARMA lecture, by invitation                                                            10 December 2014
All Party Parliamentary Group on Integrated Care                                             10 December 2014
Edgar Stene Prize closes to entries                                                                         31 December 2014
AS & You Roadshow event with NASS, Portsmouth                                           12 February 2015
BIMM Occupational Medicine, Exercise Prescription                                        21-23 Feb 2015
RCN BSR joint rheumatology conference, Birmingham                                    24-25 Feb 2015
BIMM Module 5 – Ergomomics, The Upper Limb                                             28 Feb - 2 Mar 2015
Acupuncture Awareness Week                                                                                2-8 March 2015
AS & You Roadshow event with NASS, Chester                                                   12 March 2015
ARRC International Acupuncture Research Symposium, London                  21 March 2015
AS & You Roadshow event with NASS, Sunderland                                            23 April 2015
BIMM Diploma in Musculoskeletal Medicine – Part 1 Written                        01 May 2015
BIMM Diploma in Musculoskeletal Medicine – Part 2 Clinical                        20 May 2015

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