Upcoming North Wales support group meetings for people with arthritis and chronic pain.
Dates:
7th August 2017
4th September 2017
2nd October 2017
6th November 2017
4th December 2017
Venue:
Holywell Community Hospital, North Wales.
The meeting room is behind the cafe and opposite the reception area.
Open full-size and save the flyer for more details, or see the North Wales Arthritis & Chronic Pain Support Group Facebook page.
What a difference a month makes. When I last wrote an introduction to the ARMA newsletter we were in the run up to an election. I’m not sure anyone expected the result to go quite the way it did. Instead of increasing their majority the Government now has no majority at all and will have to rely on the support of other parties to get their plans through. What will this mean for people with MSK conditions?
In some ways it will be yet another distraction. The harder it is for the government to negotiate Brexit, the less time they will have for other policy areas, such as health and social care or work and health. On the other hand, a small majority will strengthen the hand of back bench MPs and make it harder for government to refuse to listen.
One thing we can be sure of – the change and uncertainty will continue. But with uncertainty comes opportunity. As you can see from this newsletter, ARMA members are working on a range of initiatives to capitalise on opportunities and drive change. Together we provide a whole range of support, training and information to support people working for improvements in local services. Our next ARMA/NHS England regional pathways event is in Exeter on 14 July and look out for one in the South East in the autumn.
Probably the most exciting thing I have worked on this month has been the start of our ARMA on-line knowledge hub project. We will be looking for people to help test this as it progresses over the next 6 months. Once launched it will be a one-stop shop for information and evidence on MSK, and an online community where you can go for advice about any aspect of MSK work. Some of you will already be members of the MSK yammer group. If not, please do join if you want to engage with others working on the same challenges. Once the hub is up and running this will transfer across so that the discussion and the knowledge are all in one place.
These are turbulent times, but when things get tough, working together and supporting each other is even more important. Together we can deliver real benefits for people with MSK conditions.
British Society for Rheumatology publishes first UK guideline for the management of adults with Primary Sjögrens Syndrome
The first UK guideline on the care of adults with Primary Sjögren’s Syndrome has been published today by the British Society of Rheumatology. The guidelines are accredited by the National Institute for Health and Care Excellence (NICE) which recognises robust, evidence-based and critically evaluated high-quality processes applied to developing a clinical guideline.
Clinical guidelines are particularly important for patients with less common conditions like Sjögren’s because health professionals can lack confidence in managing treatment and care. Sjögren’s is a chronic, debilitating, multi-system condition predominantly affecting the moisture producing glands of the body, but also causing systemic effects. Patients often see health professionals from several different specialities because of the varied symptoms but health professionals are still quite likely to under-estimate the overall burden of their disease. The new guideline tackles that. It is a pragmatic, practical guide to management with straightforward advice and includes both non-pharmacological and pharmacological treatments.
Not only will the guideline be of particular interest to rheumatologists and other hospital based practitioners such as ophthalmologists, ear, nose and throat specialists, oral medicine experts and general physicians, but also dental practitioners, general practitioners and nurses. Patients struggle with the chronicity of the condition and are frustrated by the paucity of treatment and lack of medical knowledge about how best to manage it – this guideline gives health professionals the guidance they need to manage these patients.
The guideline was written by specialists from across the UK, alongside patients with the condition. The Guideline Working Group included an expert patient, a GP and an occupational therapist with a special interest in the fatigue and sleep problems suffered by patients with Sjögren’s and other chronic inflammatory conditions.
The guideline clarifies care of the dry eyes and mouth with special reference to oral candida and salivary gland enlargement. It extends into treatment of systemic disease and the assessment and management of pregnancy in affected women. Pharmacological treatments for systemic disease are extensively covered alongside helpful guidance on treatments that are not recommended.
Recommendations are not confined to the wholly medical. The guideline includes advice that will help patients to self-manage. Advice on reporting any painless glandular swelling that doesn’t settle due to the increased risk of lymphoma is recommended as is the provision of written information and details of appropriate support groups, on-line resources and graded exercise programmes for fatigue.
The guideline was published on 29 June 2017 in the Rheumatology Journal and is available to view, along with a full suite of guidelines, at www.rheumatology.org.uk/Knowledge/Excellence/Guidelines.
Liz Price, Consultant Rheumatologist with an interest in Sjögren’s Syndrome and lead author, commented: “I have a long-standing interest in the condition and have looked after many patients with it over the years. Patients and health professionals came together after identifying that the absence of a guideline was a problem we could solve together. I’m delighted to have played a part, working with a group of like-minded and committed individuals to create it. I’m certain that once implemented it will make a big difference to patients by improving the treatment and care they receive from their health professionals.
Bridget Crampton, patient representative on the Guideline Working Group and Team Leader on the helpline at the self-help charity British Sjögren’s Syndrome Association said: “I was very happy to be involved in this; it’s really important these vital medical guidelines include input from patients – they will clarify and standardise the diagnosis and treatment of people with Sjögren’s syndrome. We really need faster recognition and thus treatment of the condition. At present this can be a painfully slow process. I hope this guideline will be used in every GP practice and throughout the NHS.”
Elizabeth MacPhie, Consultant Rheumatologist and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group added: “Condition specific guidelines are so important for ironing out inconsistencies in practice and putting the evidence base at the heart of what we can do for our patients. Now we have published the Sjögren’s guideline the next challenge is raising awareness of it – colleagues both inside and beyond the speciality of rheumatology must know the Sjögren’s guideline is out there and ready to use”.
National Voices’ Wellbeing Our Way programme has published a learning paper reflecting on its use of communities of practice to facilitate change across the voluntary sector over the last 3 years.
With a foreword from @Helen Bevan – and in the spirit of social learning – the publication reflects on our experiences over the last 3 years and shares reflections in order that others can learn from our successes and challenges.
Guest blog by Liz Lingard, NHS RightCare Delivery Partner
Over the past 3 months I have joined the ‘Whole System MSK events’ that ARMA and NHS England have organised as the RightCare speaker. This was an opportunity to clarify the RightCare approach to everyone working across the system and how they can apply this in their local health economies. The core aim of RightCare aligns to what each of the ARMA partners aspires to achieve: ensure the right person is able to access the right care in the right place at the right time, making the best use of available resources to help deliver a sustainable NHS. Identifying unwarranted variation and a greater focus on population health is now central to many of the national programmes. It is only when you review population data across a whole pathway of care that you are able to begin to understand variation of risk factors, prevalence of conditions, healthcare utilisation and outcomes of care. Identifying where there are the greatest potential opportunities for improvement is just the first step and further investigation is required to triangulate high level RightCare data (indicative data) with other national provider and local data sources alongside qualitative information from patients and providers (evidential data).
Before working as a RightCare Delivery partner, I was a Public Health epidemiologist who believed that ‘data was beautiful’ and using measurement for improvement was the key to success. Nick Milton wrote that ‘social connection and discussion is 14 times more effective than written word, best practice guidance, databases and toolkits’. So while I continue to work with the RightCare Intelligence Team to provide a better narrative around the data we produce, I am increasingly convinced that the face-to-face narrative we have at a local level between providers, commissioners and patients is the real key for making transformational change that is sustainable happen.
As a RightCare Delivery Partner working with CCGs, I know the enormous pressures they are under to make financial savings and how healthcare providers across all sectors are concerned about what this will mean for their services and patient care. I also know that in some local health economies there has been some really innovative transformational work. There was strong clinical leadership with engagement from all provider organisations working alongside CCGs and local authorities to optimally design pathways of care and ensure that these pathways were implemented in year.
Al Mulley recently reminded me of the story of the Fosbury Flop. At the 1968 Summer Olympics, after years of high jumpers making incremental improvements to their jumps, Dick Fosbury dramatically increased the heights that could be reached. He used a different technique that then became the dominant style and is still used today. No one had tried it because it sounded so wrong; it turned out to be the right thing to do. We are at a Fosbury Flop moment for MSK care where we can no longer make incremental improvements. So I encourage everyone to connect with the MSK work happening in their local networks and be part of the discussion to transform pathways of care that will reach new heights.
Arthritis Research UK have created a new manifesto telling MPs what they can do to ensure that everyone with arthritis can have fuller lives. To make these recommendations a reality, it is vital that MPs across the country support people with arthritis through local and national activity. Prior to the general election we asked every candidate standing to be an Arthritis Champion and had 350 pledges with 24 candidates being elected to parliament. There are also 125 returning MPs who were Arthritis Champions in the previous Parliament.
Arthritis Research UK are holding a parliamentary reception in early July for MPs and Peers to come and learn more about how they can get involved, and sign up to be Arthritis Champions during this parliament. To support this campaign, people can ask their MP to sign up to become an Arthritis Champion quickly and easily online.
Arthritis Research UK has published a policy position on social care services for people with arthritis and musculoskeletal conditions. This forms part of a suite of work Arthritis Research UK is doing to influence the social care services and improve quality of life for people with arthritis.
In mid-July, Arthritis Research UK will publish its latest policy report examining musculoskeletal conditions and multimorbidity. Musculoskeletal conditions are often found among people who live with many long-term conditions. For instance, by 65 years of age, almost five out of ten people with a heart, lung or mental health problem also have a musculoskeletal condition. With the numbers of people living with multiple long-term conditions projected to grow, it’s important that we understand the changing needs of this group and ensure they are met effectively.
Over the last two years Arthritis Research UK has examined these issues in depth. We held a roundtable, spoke to people with arthritis and other long-term conditions, healthcare professionals and researchers, conducted a literature review, and analysed the General Practice Patient Survey. All of this helped us understand more about the nature and impact of living with arthritis when combined with other long-term conditions. Our findings alongside practical recommendations for national policy-makers will be available from www.arthritisresearchuk.org from mid-July.
Welcome to two new members of ARMA who have joined this month:
The Society of Musculoskeletal Medicine
The Acupuncture Association of Chartered Physiotherapists
We look forward to working with both organisations.
Wales is the only home nation without a full multidisciplinary paediatric rheumatology service, so many children and families in Wales travel long distances to access vital services. Arthritis Care believes children with arthritis in Wales deserve better.
That is why Arthritis Care Wales, together with the British Society for Rheumatology and the National Rheumatoid Arthritis Society, held a drop-in event in Cardiff on the 28 June 2017 to talk to Assembly Members about the impact of childhood arthritis and the need for better services.
You can find more information about our paediatric rheumatology campaign here.
Once more NRAS has had a very successful RA awareness week with thousands getting involved in the #behindthesmile campaign. Over 500 awareness packs were sent out in the post and there have been over 1,700 downloads of the posters and infographics from the website.
Our thunderclap went live on the first day of the week and surpassed our target, reaching over 175,000 people, and our RA awareness week frame was used by 2,000 people on Facebook and Twitter.
Click to open the full-size the Behind-the-smile NRAS team photo.
During the week, we launched part 2 of the #behindthesmile video with Jane deciding to talk about having RA.
You can view the video on our website www.nras.org.uk/ra-awareness-week
The full impact is still being calculated but we would like to say a huge thank you to everyone who has supported and shared our posts on social media throughout the week.
A big thank you ARMA and everyone who supported the campaign this year – we are overwhelmed by the fundraising activities that people organised this year in aid of JIA-at-NRAS through #WearPurpleforJIA.
This is an amazing campaign started by two mothers (Lynette and Rachel) just a few years ago. Over £12,000 has already been raised and the cheques are still coming in!
The National Rheumatoid Arthritis Society (NRAS) launched its new Work Survey last week. This will investigate the experiences of people with Rheumatoid Arthritis (RA) and Adult Juvenile Idiopathic Arthritis (JIA), any impact it has had on people’s ability to work and how it affects people in the workplace.
The research will allow NRAS to draw comparisons with its previous Work Survey 10 years ago and enable future campaigning to focus on matters that affect people with RA the most at work.
We would be grateful if you could pass on the link below and encourage your members with rheumatoid arthritis to complete the survey.
The survey and further details are available here: www.nras.org.uk/worksurvey.
Alternatively, if you would like to find out any further details, please contact Matt Bezzant, Policy and Public Affairs Manager, at matthew@nras.org.uk.
The Primary Care Rheumatology Society’s annual conference will take place in York:
16-18th November 2017
Park Inn Hotel
North St
York
YO1 6JF
An outline programme for the three-day event is available to download, and booking is now open.
Please apply with this application form application form, indicating your interest and preferences in the choice of workshops.
There are further details available at the PCR Society website here.
The BASEM and FSEM Sport & Exercise Medicine conference – Bringing us all together, 12-13 October 2017, will be delivering a focused session on Tendons and Tendinopathy.
In this session, hosted by the Faculty of Sport and Exercise Medicine UK, Dr Stephanie Dakin, BVetMed, MRCVS, Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, will outline the significance of inflammation to the onset and progression of tendinopathy:
Tendinopathy is a common global disease burden causing pain and prolonged disability. The importance of inflammation as a contributor to the development of tendon disease has been contentious in recent years. Whilst the phenotypes of the key cells orchestrating inflammation have not been fully characterized, there is a growing body of recent evidence to support the contribution of inflammation to the onset and progression of tendinopathy.
Dr Dakin’s presentation will also discuss recent research highlighting improved understanding of the mechanisms underpinning the development and persistence of inflammation, and how this may inform novel therapeutic strategies to treat tendon disease.
Dr Dakin is an Oxford UCB Prize Fellow and has been awarded consecutive Fellowships to advance and translate her research on equine tendinopathy into the human field. Stephanie’s research focuses on investigating the mechanisms underpinning the development of inflammation, pain and fibrosis in tendon disease. The goal of her research is to advance target discovery and therapeutic strategy for common diseases of orthopaedic soft tissues.
The 4th BASEM and FSEM Sport and Exercise Medicine conference is offering evidence based learning for consultants, physicians, GPs, physiotherapists, and those working across Sport and Exercise Medicine.
The conference is delivered in conjunction with the University of Bath, celebrating its 50th Anniversary, with sessions by both the University of Bath and Arthritis Research UK Centre for Sport Exercise and Osteoarthritis. Follow this link to view the full programme.
Don’t delay book your place before 30th June to receive an early bird booking discount at www.basem.co.uk supported by www.fsem.ac.uk
Keep up to date with conference news on Twitter using #AllTogether @basem_uk @FSEM_UK
