May 2016

CEO's Update

Dear All,

This past month has been for the most part a month of quiet labour for ARMA. Among other things, we’ve started mapping our members’ activities and policies in key areas of MSK with a view to producing an overarching narrative(s); refined our plans for the development of the MSK clinical networks project; and begun providing direct input to NSH Right Care’s work on optimal value pathways for MSK.

We’ve also had national and English local elections. As previously mentioned, it is important for the MSK community to speak with one voice in the nations as well as vis-à-vis Westminster. For anyone planning any activities in Scotland in particular, please get in touch with our ARMA Scotland network, currently being led by Arthritis Care, which will be working to coordinate some national influencing activity very soon. There is also a North Wales ARMA network, as well as a number of local ARMA groups in various parts of England, all of which exist to support joined-up MSK working in their locality.

We’ve also seen our MSK Knowledge Network continue to grow. Andy Lord from the CSP recently hosted a second very well-“attended” webinar as part of our new programme of online events, on self-referral and co-location of physiotherapy in primary care: all the slides as well as a recording of the webinars is (or will be made) available on Yammer, and suggestions for future webinars are always welcome. We are also planning a new set of regional events for the MSK clinical networks project – but for this, I refer you to this month’s guest blog, by Prof Peter Kay, the recently reappointed MSK National Clinical Director for NHS England. The blog is also being tweeted by NHS England and featured on NHS England’s website, so please do help it reach as wide an audience as possible.

Speaking of Twitter, we’ve now set up a new, dedicated Twitter account: @WeAreARMA. We’ll endeavour to tweet regularly from this account, so please sign up to follow it - in addition to mine, which remains active (@MoscogiuriF), and Peter Kay’s (@MSKCommunity). We’re also encouraging more people to use the #MSKCommunity hashtag in relevant tweets.

This coming month starts with London hosting the annual EULAR conference, and ends with the UK either reaffirming its membership of the EU or preparing itself for a protracted round of renegotiation of existing international agreements. You’ve all seen the briefing by National Voices on the EU referendum; the Health Select Committee has also just finished holding an inquiry into the impact of the UK leaving the EU from a health perspective, and will produce a report soon. You can read a transcript of oral evidence and written submissions on their webpage. This report by the Royal Society on UK research and the EU is also of interest.

Yours sincerely,

“We are all faced with a series of great opportunities brilliantly disguised as impossible situations.”

Guest Blog - Solving the puzzle of Musculoskeletal Service transformation

by Professor Peter Kay, National Clinical Director for Musculoskeletal Services for NHS England.

I was asked to write a blog to raise the profile of my MSK work supported by the Long-Term Conditions Team and, through the cryptic labyrinth of various schemes and initiatives, share with you my thoughts on how we can support sustainable, cost-effective transformation whilst still championing the more person-centred approach.

Easy task right?

Increasingly we are faced with the challenge of implementing population-level interventions in a bid to tackle unwarranted variation within our local areas. At the same time, many of us are striving to strike a balance that enables us to deliver care more holistically – that is in a way that empowers patients, supports families and carers and promotes decisions led by the needs and wants of those who are specialists in their own care: the patients.

It’s not always possible to be all things at once. Nor is it possible to come up with all the ideas yourself. Enter our solution! The MSK Knowledge Network is a forum which was set up through a process of co-production with all the main patient-led and professional organisations active in the field of MSK. Its overarching aim is to improve outcomes, increase value and reduce unwarranted variation in MSK care. This is achieved by enabling better communication between sectors, facilitating the sharing of good practice and promoting a multidisciplinary and collaborative approach to problem-solving, both cross-professionally and cross-organisationally.

One way we are seeking to do this is to draw together the strands of work beating through the hearts of our partner organisations through a programme of national webinars. From government-funded bodies to voluntary sector charities, the wealth of experience and knowledge within our MSK community is breath-taking. The investment in improving the outcomes and experience for patients with MSK disorders alongside the initiatives aiming to increase prevention and strengthen resilience is inspiring. The chance to share ideas, challenge preconceptions and support new ways of thinking is something we are really proud of.

But we still face our own challenges. The question for us is how to develop a sustainable network, one that continues to build momentum and holds the interest of its members. To do this, the MSK Programme Team and I will continue to work with the MSK community – through the Arthritis and Musculoskeletal Alliance – to support the development of MSK networks from a regional level, with a string of events due to take place this coming autumn. The events will follow from, and build on, the excellent national seminar which many of you attended in January this year. Various MSK professional groups already have a national network of regional reps, who you are invited to get in touch with if you haven’t already. If you already have an MSK network, or are keen to develop one, and you want to be involved in hosting or helping to organise one of these events, please get in touch for more information about how you can get involved.

Reflecting on how my experience has shaped my view of the puzzle that is the ever-developing landscape of transformation in the NHS, I notice success means different things to different people. For me it is creating a programme of work with such merit that it can become self-sustaining. And to others? Well I defer to this analogy… 3 orthopaedic surgeons took 5 days to do a jigsaw and were proud of their achievement. When asked why they were so proud they said because it said 3-5 years on the box.

For now I’ll just keep hoping the bookings for the other (less funny) Peter Kay keep rolling in so I can continue to raise the profile of the excellent work underway across the MSK community.

#MSKcommunity – Find out more at the Knowledge Network's Yammer site.

#A4PCC – Sign up and make your Declaration for person-centred care.

Share and Comment online.

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Members' News and
Resources

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A collaborative approach to improving outcomes

A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases

Earlier this month BSR launched report setting out a programme of work to enhance the care for people with rare rheumatic and musculoskeletal conditions.

The report comes at an important time for rare diseases. Two years on from the launch of the UK Rare Disease Strategy, much of the focus has been on Genomics and the 80% of all rare diseases that have a genetic origin. However, BSR believes that greater priority should be given to the non-hereditary rare conditions, of which the rare inflammatory and autoimmune diseases are a very important component. These related conditions include ANCA Associated Vasculitis (AAV), Lupus and Scleroderma.

People living with these conditions report delays in diagnosing and treating their condition of up to 7 years. During this time their health may deteriorate with risk of permanent disability, organ failure, or even death. For example, 1 in 6 people diagnosed with AAV are likely to die within a year of diagnosis.

Download the report which offers a first step in delivering a co-ordinated response to the needs of people living with these conditions.

 

BHPR Educational Bursary

Further your education in rheumatology by applying for the BHPR educational bursary.

Applications will be judged anonymously and independently by a panel nominated by BHPR. Judges will reach a consensus on the applications and awards will be made to the applicants thought to benefit most.

Applications close on 4th June 2016.

 

Two new draft guidelines open for consultation

As part of our NICE accredited guidelines process, draft BSR clinical guidelines are open for public consultation.

The two new guidelines open are:

• Non-Biologic DMARDS

• SLE in Adults

Please email Chris Hiley, Research Project Manager by 16 June 2016 with your response.

 

National clinical audit for rheumatoid and early inflammatory arthritis

BSR would like to invite you to attend the launch of our second annual report on 25 July 2016 at the King's Fund in London.

The launch will be a breakfast event presenting the key findings, sharing best practice and discussing the future of the project from 8:30am - 10am.

Please confirm your interest in attending by 24 June 2016 to Rose David, Project Support Officer. Places will be allocated on a first-come-first-served basis and we are unable to cover any expenses.

 

SAGWG Membership

Join the Standards, Audit and Guidelines Working Group, a subcommittee of BSR's Clinical Affairs Committee. This is a good opportunity to influence practice and improve standards of care in UK Rheumatology.

Apply online here before 09 June 2016.

 

Submit your proposal for Rheumatology 2017

Plans for Rheumatology 2017 are underway!

We're now inviting session proposals for Rheumatology 2017.

Submit yours online and help shape the UK's definitive rheumatology event.

The deadline for submitting is 03 June 2016.

 

Submit your abstracts for the Autumn conference

Four topics have been confirmed:

• Raynaud’s disease – Convened by Prof Ariane Herrick

• Spondyloarthropthies – Convened by Prof Walter Maksymowych

• Vasculitis – Convened by Dr David Jayne

• Infection and arthritis – Convened by Prof Robert Moots

Abstract submissions close 05 June 2016, submit yours now!

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BSR launches roadmap to improve care for people living with rare conditions

BSR launches roadmap to improve care for people living with rare conditions

On Wednesday 11th May 2016, The British Society for Rheumatology (BSR) launched a report setting out a programme of work to enhance care for people with rare rheumatic and musculoskeletal conditions.

A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases builds on a national workshop hosted by the BSR in November 2015, which brought together a range of stakeholders to help raise the priority of rare rheumatic and musculoskeletal conditions and improve patient care.

A key theme to emerge from the workshop was the need for greater cross-sector collaboration and this report sets out a number of recommendations, including the need to:

• work to improve condition knowledge across all health professionals

• create a rare rheumatic and musculoskeletal partnership, building on commonalities across these conditions to foster closer collaboration and knowledge sharing

• develop national audits for rare conditions to help measure and drive improvement in standards of care

• improve the data available to the NHS about these conditions through disease registries and adoption of specific rare disease coding

• promote the development of regional coordinated networks of care for rare diseases.

The report comes at an important time for rare diseases. Two years on from the launch of the UK Rare Disease Strategy, much of the focus has been on Genomics and the 80% of all rare diseases that have a genetic origin. However, the BSR believes that greater priority should be given to the non-hereditary rare conditions, of which the rare inflammatory and autoimmune diseases are a very important component. These related conditions include ANCA Associated Vasculitis (AAV), Lupus and Scleroderma. People living with these conditions report delays in diagnosing and treating their condition of up to 7 years. During this time their health may deteriorate with risk of permanent disability, organ failure, or even death. For example, 1 in 6 people diagnosed with AAV are likely to die within a year of diagnosis and life expectancy for people with Lupus UK is 20 years shorter than the UK average.

A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases, offers a first step in delivering a co-ordinated response to the needs of people living with these conditions. This view is underlined by Dr Peter Lanyon, BSR President and Chair of the NHS England Clinical Reference Group for Specialised Rheumatology, who commented:

“This report sets out a vision of how the stakeholders within our community can work together to improve the lives of people with rare rheumatic and musculoskeletal disorders. These have largely gone under the radar of policymakers and those who commission and deliver health services. We hope to redress that through the collaborative approach outlined in this report, to ultimately help deliver better care and outcomes.”

This sentiment was also echoed by Jane Dunnage, former chair of Lupus UK, who said, “people with rare rheumatic and musculoskeletal conditions, such as Lupus, will be heartened by this report. It helps shine a light on this overlooked group of diseases that have such a significant impact on people’s lives. We urge our partner organisations to support us in raising their profile and driving improvements to services for people with these conditions.”

The report is available to download now.

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Rheumatology community welcomes breakthrough decision for people living with Lupus

Rheumatology community welcomes breakthrough decision for people living with Lupus

Lupus: a disease where the body attacks itself.

In the month that saw the arrival of World Lupus Day, the British Society for Rheumatology (BSR) strongly welcomes the recent decision by NICE to recommend Belimumab be available as a treatment option for Systemic Lupus Erythematosus (SLE).

Lupus is a disabling and life threatening autoimmune disease in which the body's own immune system attacks and damages healthy tissues and organs throughout the body. This recommendation will enable people living with lupus to access this new treatment, if they have active disease that has not been controlled by other medications.

In response to this announcement, BSR President, Dr Peter Lanyon added:

“Belimumab is a biologic drug which specifically targets the underlying problems in the immune system that occur in Lupus. It's a major breakthrough and the first new licensed drug for this condition in over 50 years. We also welcome the recommendation that whenever this new treatment is given, data is also collected into the BILAG BR research registry. This model of collecting real-life information in people receiving biologic drugs has been pioneered by the BSR in conjunction with the whole rheumatology community.”

Ian Bruce, Professor of Rheumatology at The University of Manchester, who leads this research registry for Lupus echoed this by commenting:

“This recommendation by NICE will enable additional data collection throughout England and Wales on the pattern of use of Belimumab and its effectiveness and safety in a real world setting. As a result, we will be able to provide information that the NHS needs to enable it to make the right long-term decisions about access to both Belimumab and other new drugs in the future. It's a prime example of how integrating research with routine clinical care allows the NHS to continue to learn more about new treatments so that we can obtain the best outcomes for Lupus patients”

This announcement comes in the same week that BSR launched its report ‘A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal disease’, outlining a programme of work to improve care for people with rare inflammatory and autoimmune diseases such as Lupus. Recommendations include enhancing condition knowledge across all health professionals, developing national audits for rare conditions and improving the data available to the NHS through disease registries and specific coding.

This report is available to download as a PDF here.

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Effective role of Fracture Liaison Services highlighted

Effective role of Fracture Liaison Services highlighted

Fracture Liaison Services are an effective way to prevent further fragility fractures and save the NHS money, a new report from the Royal College of Physicians says. But the study also reveals that most services are not currently funded to match the level of patient need.

Click here to read the FLS-DB facilities audit - FLS breakpoint: opportunities for improving patient care following a fragility fracture

Anne Thurston, Head of Policy at the National Osteoporosis Society said: "We have long championed the role Fracture Liaison Services play in preventing fragility fractures, saving the NHS money and improving the quality of people's lives."

 

Osteoporosis 2016 conference: abstract submission deadline

The deadline for abstract submission for the National Osteoporosis Society's leading Osteoporosis 2016 conference is noon on Friday 3rd June. To submit your abstract, visit the Osteoporosis conferece 2016 page on our website.

Submitting authors will receive confirmation of the outcome of their submission in mid July 2016, with the conference taking place in November.

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Arthritis Care Week round-up, May 2016

Arthritis Care Week round-up, May 2016

Arthritis Care Week hit the headlines in May.

We launched our survey of over 2000 people living with arthritis, challenged the myth of arthritis as an inevitable condition of old age, shared stories and gained politicians support.

Visit www.arthritiscare.org.uk/acweek to read Arthritis Care's round-up of the week.

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PMRGCA UK AGM and Members' Day 2016

PMRGCA UK AGM and Members' Day 2016

Join us on Wednesday 15 June for our 2016 AGM and Members' Day

As in previous years, the day will start with our charity AGM after which we will hold our Members’ Day, with the opportunity to hear from two excellent speakers, have a chat and share experiences over lunch and take part in small group discussions.

President of PMRGCAuk, Professor Bhaskar Dasgupta, Consulting Rheumatologist, will be speaking first about the new GCA guidelines and the fast-track pathway (FTP) piloted at the Southend University Hospital NHS Trust.

Trustee Dr Kate Gilbert is our second speaker. Many of you will have read the first edition of her highly acclaimed book Polymyalgia Rheumatica and Giant Cell Arteritis: A survival guide. Kate will be telling us all about the second edition which is packed with the latest information to help all of us survive our journeys through PMR and GCA.

Our third speaker is Dr Saleyha Ahsan, one of the presenters of the BBC's 'Trust Me I'm A Doctor'. As well as presenting the programme, Dr Ahsan works in the accident and emergency department at Whipps Cross Hospital in North East London. She is also widely respected for her outstanding and brave voluntary work in hospitals in conflict zones around the world.

 

Date: Wednesday 15th June, 11am – 4pm
Venue: NCVO, 8 All Saints Street, London, N1 9RL
(NB. This is the same venue as last year)
Cost: The AGM is free to all Members but we ask for a donation of £10 for attendance at the Members’ Day – this includes lunch and refreshments
To book: Please email admin@pmrgcauk.com for a booking form.
Download the PDF leaflet version of this post here.

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Shine a Spotlight on RA

Shine a Spotlight on RA - Rheumatoid Arthritis Awareness Week 2016

NRAS will be hosting its RA Awareness Week (RAAW) 2016 from 13th to 19th June this year. The focus of this week will be on the theme 'Spotlight on RA'. The campaign will have two different elements, for those unaware of RA and NRAS and for those who are living with RA. You can read more them on our RA Awareness Week page.

NRAS has produced three awareness week posters, available to highlight three very important aspects of RA

•    The cardiovascular risk
•    The hidden symptom of depression 
•    The risk of developing RA through smoking

The more posters we can display, the more people our message can reach.

You can request a set of posters to display or download them from our website.

A Thunderclap is a way of sending the same message at the same time to Facebook and Twitter users so that our collective voice can be heard. We have set up a Thunderclap to go out during RA Awareness week so please sign up today and help raise awareness and put a #SpotlightOnRA! Sign up here: https://www.thunderclap.it/projects/42116-ra-awareness-week-2016

We are also holding our first RA awareness week raffle – there are some fantastic prizes up for grabs including 1st prize of dinner for two at the iconic BT Tower Dining Club and 2nd prize of return tickets on Eurostar!  Tickets are only £1.00 each.

Find out more about our amazing prizes and buy tickets on the NRAS website here - http://www.nras.org.uk/raffle-2016  Call 01628 823524 or email fundraising@nras.org.uk if you have any queries. Tickets will be on sale until the 20th June and the draw will take place on the 21st June at 12 noon. Good luck!

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International EDS Symposium, New York

The International Ehlers-Danlos Symposium convened in New York at the beginning of EDS Awareness Month with a view to exploring developments in research and treatment of the various types of EDS. GPs, physiotherapists, rheumatologists, surgeons, OTs, geneticists, charity representatives, patient experts, non-profit organisations etc., were all given an equal opportunity to come to the microphone and voice their concerns, agreements and questions.

The information, discussion and presentations shared in New York will be used by working groups tasked with putting a framework in place to facilitate the building of a revised EDS nosology; better defining each subtype and management of its complex symptoms; deciding whether to keep / devise new descriptive nomenclature, and discussing clinical versus genetic classification. The symposium was also tasked with producing guidelines for medical professionals to use once a diagnosis has been reached, which can be used as a universal guide for management.

Hypermobility Syndromes Association's Partnership and Project Development Director, Claire Smith (seen on the left in the photo wearing yellow), along with our Chair Robert Studholme-Smith, represented the HMSA.

Click here to see the line-up photo of attendees.

It was wonderful to see such a large contingent from the UK, with some 30 plus in attendance, some of whom also form part of the HMSA’s medical advisory board, including Dr Alan Hakim (Chief Medical Advisor), Professor Rodney Graham, Dr Brad Tinkle, Prof Qasim Aziz, Dr Jane Simmonds and Dr Hannah Kazkaz.

Our thanks to all those involved in organising this event, both in front and behind the scenes, and to Virtuose Circuits Ltd, who specifically donated to the HMSA in order to enable our delegates to attend.

Accounts of HMS

Also launched this month is "Accounts of HMS," a delicate and involved project documenting the human side of hypermobility syndromes.

Amy-Fern Nuttall travelled the length and breadth of the country to photograph and interview over one hundred of our members. In addition to the portraits and testimonies of people living with hypermobility syndromes, the book contains coherent explanations of each condition, their causes and their symptoms; explorations of all the findings discovered by conducting this research; and a comparison of the Beighton and Brighton criteria with handy diagrams.

The book is available from Amazon, with a percentage of proceeds going to the HMSA.
Buy Accounts of HMS by Amy-Fern Nuttall (ISBN: 9781530861811) from Amazon's Book Store. Free UK delivery on eligible orders.

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Rheumatoid Arthritis Medical Research Initiative

Rheumatoid Arthritis Medical Research Initiative

Last week I picked up the attached leaflet at Poole Hospital. It is about an initiative to study rheumatoid arthritis (RA) through close relatives of those who have this disease, but do not have the disease themselves. This study aim to identify the risk factors for developing RA and so find ways to prevent it. All people need to do is to complete a questionnaire and give a blood sample.

Download the leaflet as PDF document.

By detecting any hereditary tendency for RA, such research may help people and their offspring in the decades ahead, because the earlier it is detected - in relation to very early stage disease onset - the easier it is to control it.

Please consider contacting preventra@manchester.ac.uk
0161 275 5504
www.preventra.net

Yours faithfully,
Barry Faith
ARMA Portsmouth

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LUPUS UK on BSR’s Roadmap to Improve Care

LUPUS UK on BSR’s Roadmap to Improve Care for people living with rare rheumatic and musculoskeletal conditions.

The British Society for Rheumatology (BSR) has launched a report setting out a programme of work to enhance care for people with rare rheumatic and musculoskeletal conditions.

A collaborative approach to improving outcomes in Rare Rheumatic and Musculoskeletal diseases builds on a national workshop hosted by the BSR in November 2015, which brought together a range of stakeholders to help raise the priority of rare rheumatic and musculoskeletal conditions and improve patient care.

A key theme to emerge from the workshop was the need for greater cross-sector collaboration and this report sets out a number of recommendations, including the need to:

• work to improve condition knowledge across all health professionals

• create a rare rheumatic and musculoskeletal partnership, building on commonalities across these conditions to foster closer collaboration and knowledge sharing

• develop national audits for rare conditions to help measure and drive improvement in standards of care

• improve the data available to the NHS about these conditions through disease registries and adoption of specific rare disease coding

• promote the development of regional coordinated networks of care for rare diseases

Jane Dunnage, former chair of LUPUS UK, said, “People with rare rheumatic and musculoskeletal conditions, such as lupus, will be heartened by this report. It helps shine a light on this overlooked group of diseases that have such a significant impact on people’s lives. We urge our partner organisations to support us in raising their profile and driving improvements to services for people with these conditions.”

The report is available to download now from the BSR website, here.

 

Belimumab (Benlysta) finally approved for limited use on the NHS

The first new treatment for lupus in more than 50 years, Belimumab (Benlysta), has finally been approved for limited use on the NHS for certain patients living with the condition in England and Wales.

The National Institute for Health and Care Excellence (NICE) said that the drug would be made available under a managed access scheme between GlaxoSmithKline (GSK) and the National Health Service (NHS) in England. This requires the treatment to be reviewed by NICE after three years, during which time further data will be collected on its benefits to patients.

Benlysta was approved in Europe five years ago. It is the first in a new class of drugs called BLyS-specific inhibitors, which work by targeting a naturally occurring protein believed to play a role in the production of antibodies which attack and destroy the body’s own healthy tissues.

GSK will provide the medicine to the NHS at an undisclosed discount.

“We are very pleased that NICE has announced that this new treatment will be made available on the NHS for lupus patients in England and Wales who meet the necessary criteria. It has allowed access to another treatment option for those with advanced disease which has failed to respond to currently available therapies.” – Chris Maker (Director of LUPUS UK).

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World Lupus Day 2016 Report

World Lupus Day 2016 Report

This year’s World Lupus Day was very successful, receiving a lot of support and engagement from our members and other supporters. LUPUS UK hosted a couple of large events to support the campaign this year.

On Saturday 7th May we hosted a Lupus Information Day in Glasgow. The event was attended by approximately 130 people and featured presentations from guest speakers about a variety of ‘lupus-related’ topics.

The presentations were:

• “THE WORK OF LUPUS UK” - Chris Maker, Director LUPUS UK

• “LUPUS TREATMENTS NEW AND OLD” & “LUPUS IN PREGNANCY – WHAT ARE THE CONCERNS?” - Dr Gillian Roberts, Consultant Rheumatologist, Royal Alexandra Hospital, Paisley

• “SELF MANAGEMENT” - Gavin Paterson, Partnership and Practice Programme Development Officer , Health and Social Care Alliance Scotland

• “LUPUS AND THE KIDNEY – CURRENT AND FUTURE DIRECTIONS FOR TREATMENT” - Dr Elaine Morrison, Consultant Physician and Rheumatologist, Queen Elizabeth University Hospital, Glasgow

Videos of the first three presentations can be viewed on the LUPUS UK website at https://www.lupusuk.org.uk/strathclyde-infoday-videos

 

Go that extra mile

LUPUS UK organised a ‘Go That Extra Mile’ sponsored walk in the centre of London on Saturday May 14th 2016. This was attended by over 60 people and managed to raise a lot of awareness for the condition on the day.

The funds raised from the event are still coming in, so a total will be announced at a later date.
Click here to see the event photo.

 

Join the Fight

We also launched a new video on World Lupus Day called, ‘Join The Fight Against Lupus’.

The video highlights the work of LUPUS UK and features interviews with Dr John Ioannou (discussing advancements in treatment) and two patient volunteers (discussing their experiences and the role of lupus support groups). You can watch the video here.

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Summary of the Fibromyalgia event in the Parliament

Summary of the Fibromyalgia event in the Parliament

On the 11th May 2016, a Fibromyalgia Awareness event took place in Parliament, hosted by Andrea Jenkyns MP, and organised by Fibromyalgia Action UK (FMA UK).

The event was well attended by MPs, researchers, healthcare professionals, students and people living with fibromyalgia, their families and carers. There will be some exciting outcomes of this event resulting in greater collaboration of different stakeholders in the fibromyalgia field: patient organisations, healthcare professionals, researchers and policy makers.

During the event Dr Toby Garrood, a consultant from the Guy’s Hospital fibromyalgia clinic, gave an overview of the award-winning and excellent fibromyalgia multidisciplinary service, which can act as a role model to be replicated easily and for low-cost in rheumatology departments of hospitals across the country. FMA UK will look at how to facilitate the spreading of the knowledge about this service to relevant healthcare providers, CCGs, the NHS England and the NHS in devolved nations.

As part of preparing for the event, FMA UK started a good conversation with NHS England on service delivery for fibromyalgia patients; and this will be followed up, including considering how to make information about the fibromyalgia clinic in the Guy’s Hospital accessible to healthcare providers.

During the event we heard a briefing from NHS England on multidisciplinary clinical networks project, run in collaboration with ARMA (Arthritis and Musculoskeletal Alliance), of which FMA UK is a part. Federico Moscogiuri, the CEO of ARMA, gave an overview of the clinical network project and the exciting prospects it provides for collaboration and sharing knowledge amongst the different stakeholders in the musculoskeletal field.

Andrea Jenkyns MP opened the event and told her personal story of living with fibromyalgia. John Nicolson MP spoke about his personal experience of having a close family member living with fibromyalgia. A number of patients spoke and shared touching and moving stories about how fibromyalgia affects their lives and what they do to manage the condition. Ella Vine, Executive Officer of FMA UK, gave an overview of the current situation of fibromyalgia in the UK and called for a greater collaboration of all the groups involved in fibromyalgia: doctors, patients, patient organisations, researchers, MPs and policy makers. The outcome of the meeting is that all the groups mentioned need to work together and talk to each other in order to achieve change, and that a positive change is achievable. Ella has also called for an effort to get the data released on how many people currently are diagnosed with fibromyalgia in the UK.

Dr Kim Lawson, a researcher from the Sheffield Hallam University presented the research he is currently undertaking on the treatment of fibromyalgia. He said that there are three main pillars to better treatment of fibromyalgia: acceptance, diagnosis and management. Dr Lawson spoke about the slow, albeit steady progress in the understanding of the biology of fibromyalgia, as more research is coming through. He also spoke about the current problems with acceptance of the condition and with diagnosis – where the diagnosis in the UK takes on average 8 years.

Dr Lawson said that we need to have a faith and confidence that positive changes will be achieved, and he called for support and backing to novel approaches to fibromyalgia, for example, CBT (cognitive behavioural therapy) and treatments that already exist, which can be utilised to treat the symptoms of fibromyalgia, like physiotherapy, CBT, relaxation techniques etc. He quoted a research paper from 2006 that shows a huge fibromyalgia-related cost to the government and asked that something be done urgently to lower costs and save government’s money. FMA UK supports that call to action.

Dr Toby Garrood said that we need more fibromyalgia clinics that treat the whole spectrum of symptoms rather than just treating the pain on its own. He said that “you cannot treat the pain without treating anxiety, depression and many other symptoms” hence a multidisciplinary and a holistic approach is the most effective. Dr Garrood said that listening is the most important thing a doctor can do; also to understand the impact fibromyalgia have on lives. In the Guy’s Hospital Fibromyalgia Clinic there are rheumatologists, physiotherapists, psychologists, all are involved in patient’s holistic treatment. Dr Garrood would like that model to be replicated everywhere: “any rheumatology department can do that,” he said.

Dr Garrood spoke about the reluctance of doctors to diagnose fibromyalgia, which results in patients suffering unnecessarily. He called for an early diagnosis and early treatment. He mentioned the issues of disability and work and said that “it is in everybody’s interest to get the patients better”.

Federico Moscogiuri of ARMA has also advocated a holistic approach, which ARMA promotes: looking for a more preventative, more-person-centred approach with a better understanding and awareness of the impact musculoskeletal conditions have on individual and on the society. Federico outlined ARMA’s partnership with the NHS, which promotes a coordinated care that not only treats the illness but is also preventative, keeping people healthy and at work. He stressed the importance of self-management and described ARMA’s awareness campaign in collaboration with Public Health England “One You”, which focuses on a prevention of disability and physical activity to keep people mobile.

FMA UK would like to thank everyone for attending and for their contributions and would like to thank Andrea Jenkyns MP for hosting this landmark event, which hopefully will lead to exciting things and will start collaboration between the different stakeholders.

FMA UK would like to also thank all other MPs who attended the event: John Nicolson MP, Jack Lopresti MP, Philip Hollobone MP, Alex Chalk MP, Paul Maynard MP, Brendan O’Hara MP, Natalie McGarry MP, Mark Durkan MP and Nick Thomas-Symonds MP – and those MPs who couldn’t attend but take an active interest in the issue of fibromyalgia.

If you have any questions related to the event email Ella Vine ella.vine@fmauk.org

Information on the Fibromyalgia clinic at the Guy’s Hospital:
http://www.guysandstthomas.nhs.uk/our-services/rheumatology/specialties/fibromyalgia/patients.aspx

Guy’s Hospital fibromyalgia clinic won the Best Practice Award by the British Rheumatology Society:
http://www.rheumatology.org.uk/publications/best_practice/guys_and_st_thomas_nhs_foundation_trust.aspx

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Scotland

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Arthritis champions campaign, Scotland

Arthritis champions campaign, Scotland

By the time the polls closed, 93 candidates from across all major parties had agreed to become Arthritis Champions. 39 Arthritis Champions have been elected, 30% of all MSPs. This gives us a sizeable base of support to build on within the Scottish Parliament over the next 5 years.  A third of the main ruling parliamentary party (SNP) are committed to our manifesto.

During the campaign, nearly 350 supporters across Scotland emailed their election candidates. 3121 emails were sent to candidates asking them to be Arthritis Champions.

We are extremely keen to ensure that those MSPs that promised to be champions whilst candidates fulfil those promises now that that they are elected. We have produced a ‘What you can do in your first hundred days guide’ for all MSPs.  We want to capitalise on the momentum this campaign has built. All supporters will be receiving regular updates on our work in Scotland with the new Arthritis Champions.

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International News

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The next EULAR congress is at the Excel Centre, London 8th-11th June 2016. See http://www.congress.eular.org/ for full details.

The theme of World Arthritis Day (WAD) in 2016 is 'It's in your hands, take action' (continuing from 2015). Encouraging people to take action and make a difference to the quality of life for people with MSK conditions, you can share your #WADStory.  See WAD on Twitter,  Facebook and Instagram.  

See www.worldarthritisday.org for full details on how to get involved in the lead up to the 12th October.

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Member Vacancies

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Three Vacancies at Arthritis Research UK

3 Vacancies at Arthritis Research UK

 

Lifestyles policy implementation manager

Location: Public Health England, London
Hours: Full time – 35 hours per week
Salary: £46 – 50k + benefits
Contract type: 24 months fixed term
Closing date: Sunday 5 June 2016

Find out more >

Research evaluation manager

Location: London or Chesterfield
Hours: Full-time (35 hrs) or part-time
Salary: £38,000–41,000 + benefits
Contract type: Full-time, permanent
Closing date: Sunday 12 June 2016

Find out more >

Senior public health analyst

Location: Public Health England, London
Hours: Full time, 35 hours per week
Salary: £36 – 40k + benefits
Contract type: 24 months fixed term
Closing date: Sunday 5 June 2016

Find out more >

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Spotlight On...

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New report released: Is welfare to work, working well?

New report released: Is welfare to work, working well?

On Thursday 26 May 2016, the Work Foundation launched a report “Is welfare to work, working well?” focussing on how current welfare-to-work provision is working for those whose health may be a barrier to working, and highlighting how support might be improved going forward. The report makes a number of recommendations around the forth-coming Health and Work Programme and the upcoming Green Paper. 

The report highlighted how the Work Capability Assessment (WCA) process to determine eligibility has been a subject of concern in its structure and format, with incorrect and appealed decisions feeding feelings of mistrust regarding the entire assessment process. The report recommends separating testing for benefit eligibility from assessments of barriers to work.

Furthermore, the Work Programme has not performed well for participants with health conditions, who remain substantially less likely to gain a sustained job than their peers without health conditions; in contrast, the Department for Work and Pensions main specialist programme for people with health conditions, Work Choice (a voluntary programme) has performed much better. The report recommends improving specialist support, including maintaining and enhancing specialist health-related support in Jobcentre Plus.

The report found that there were a number of benefits of running welfare to work on a local basis for people with health conditions, particularly in the development of integrated services, yet there needs to be opportunity to evaluate and learn ‘what works’ from existing provision.

ARMA, the Arthritis and Musculoskeletal Alliance, together with a number of ARMA members, is a member of the Fit for Work Coalition which works in partnership with the Work Foundation. 

The Work Foundation full report and executive summary can be accessed on the Work Foundation website.

There are a number of other resources on the website including:

• Summary of the launch event, including speaker presentations and activity around the #HealthAtWork used during the launch and post-launch discussion with the report authors.

• V-Blogs from the speakers and some attendees of the launch on the Work Foundation website.

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Spotlight on Prevention: Support for STP footprints

The development of Sustainability and Transformation Plans (STPs) will require local health and care partners to work together in new and different ways. National health and care bodies are working closely with STP footprints to support them to do this.

The Chartered Society of Physiotherapy, National Osteoporosis Society and ARMA contributed to the guidance for STP footprints.

This page on the NHS England website contains some support tools and guidance for STP footprint leads and their teams.

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Shared learning workshops in Greater Manchester

Shared learning workshops in Greater Manchester

Peer Support and Supporting Self Management

National Voices' Wellbeing Our Way programme and Macc are hosting two shared learning workshops bringing together people working in charities, wider health and care organisations, and those with lived experience from across Greater Manchester to develop approaches which enable people to live well.

These are a great opportunity for shared learning between staff working directly with people with long term health needs, as well as those who are commissioning and developing these approaches.

Read more here.

How Does the EU Affect Health and Wellbeing in the UK?

National Voices has compiled a briefing to look at just this, ahead of the EU referendum on 23 June 2016. It explains ways in which the EU currently impacts on health and wellbeing, providing a snapshot of how things stand today, without making assumptions, or guesses about what might happen.

The briefing also provides a useful jargon buster - read it in full here.

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Selected News Items & Links

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CQC

The Care Quality Commission (CQC) have published their Better Care in My Hands Review.  National Voices have summarised  the key findings from the report, which found that certain groups, including those with long term conditions, were less likely to be involved in their care.

Looking to the future, the CQC have also published their new five year strategy, outlining their vision of a more collaborative approach to regulation. This follows a year-long consultation.

Voluntary sector

A joint review by the Department of Health, Public Health England and NHS England, the outlines recommendations  for Voluntary, Community and Social Enterprise (VCSE) organisations within the health and social care sector. Alex Fox, chair of the review, summarises the findings

DoH

The Department of Health have opened a consultation on Public Health England's performance, governance, effectiveness and  efficiency. Respond online, by email or post by 24th June 2016 (11.45pm).

 

NICE

NICE have launched a new way of finding quality statements and associated information. Their new BETA site https://ld.nice.org.uk/qs allows you to filter by factors including population, conditions and settings. They welcome feedback whilst the site is in development.

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ARMA Calendar

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Closing date for abstract submission, Osteoporosis Conference 2016               03 June 2016
Closing date for Rheumatology 2017 proposals                                                      03 June 2016
Applications close for BHPR Educational Bursary                                                 04 June 2016
Closing date for abstract submission, BSR Autumn Conference                         05 June 2016
Carers' Week                                                                                                                   06 June 2016
EULAR 2016 – Annual European Congress, Excel Centre, London                   08-11 June 2016
RA Awareness Week, NRAS                                                                                        13-19 June 2016
PMRGCA UK AGM and Members' Day 2016                                                          15 June 2016
Clinical Networks Steering Group                                                                             16 June 2016
Bone Health and Osteoporosis professional conference, Portsmouth               22 June 2016
Love your Bones - Patient & Public conference, Portsmouth                              22 June 2016
EU referendum                                                                                                              23 June 2016
ARMA AGM and Reps Forum                                                                                    04 July 2016
CEO meeting                                                                                                                  04 July 2016
ARMA Board meeting                                                                                                  04 July 2016
Policy and Comms meeting                                                                                         19 July 2016
BSR National clinical Audit report launch, King's Fund in London                   25 July 2016
RCN-SOTN International Conference & Exhibition, Cardiff                               08-09 Sept 2016
CEO meeting, 10.00am-12.30pm, BOA, 35-43 Lincoln's Inn Fields                  20 September 2016
Clinical Networks Steering Group, 2-4.30pm, BOA, Lincoln's Inn Fields        20 September 2016
British Conference for Acupuncture and Oriental Medicine                                23-25 Sept 2016
Policy, Comms and All Stakeholders meeting                                                         27 September 2016
Rheum for You – Nottingham, NRAS                                                                       29 September 2016
Lupus Awareness Month Begins                                                                                01 October 2016
Members' Gathering in Scotland (Stirling), NRAS                                                 4 October 2016
NASS Birthday Bash, London                                                                                     15 October 2016
World Osteoporosis Day                                                                                              20 October 2016
BSR Autumn Conference                                                                                             13-14 October 2016
Osteoporosis 2016 Conference, Birmingham                                                          7-9 November 2016
Policy, Comms and Gold Stakeholders meeting                                                     23 November 2016
Clinical Networks Steering Group                                                                             02 December 2016

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