Arthritis and Musculoskeletal Alliance
This is a category taken from the full feed of Musculoskeletal and Arthritis news provided by ARMA's members.
  • The Arthritis and Musculoskeletal Alliance (ARMA) is the umbrella body for the arthritis and musculoskeletal community in the UK, and our mission is to transform the quality of life of people with musculoskeletal conditions. We have 40 member organisations ranging from specialised support groups for rare diseases to major research charities and national professional bodies.

Patients

The inaugural Brain, Mind and Pain Grant announced its winners in June, naming three innovative, patient-centred projects:

  • Master Your Pain by Groningen University – an e-health platform to help patients with rheumatic pain self-manage their symptoms
  • ASPERGA Association for their prototype auditory aid that aims to reduce sensory pain in people with autism spectrum disorder
  • MyBrainNet by Dystonia Europe – a central platform for neurological brain diseases, providing information to patient groups and patients to help improve their quality of life.

The Brain, Mind and Pain Grant is the first grant into chronic pain that is run by patients, for patients. Winners were judged by a jury of patients and patient representative, with the support of scientific experts.

“Patient voices are essential to drive the research and innovation agenda. Our lived experience should be at the centre of every research project because no one knows the disease better than the person living with it,” says patient jury member Joke Jaarsma.

The grant received over 19 applications from over 8 European countries. The grant ceremony was attended by over 100 people, including:

  • MEP Danuta Jazlowiecka (EPP, Poland)
  • MEP Marian Harkin (ALDE, Ireland)
  • MEP Nessa Childers (S&D, Ireland)
  • Pain Alliance Europe President Joop van Griensven
  • EFNA Executive Director, Donna Walsh
  • Mark Fladrich, CCO Grünenthal
  • EFNA President Joke Jaarsma

The Brain, Mind, and Pain Patient Centred Innovation Grant is a joint project run by Pain Alliance Europe and financially supported by Grünenthal, with partner support from the European Pain Federation (EFIC), the European Academy of Neurology (EAN), and the European Federation of Neurological Associations (EFNA).

Throughout April, the Institute of Osteopathy has been promoting their #LoveYourHealth social media campaign, showcasing key health and wellbeing messages with the public. The focus of the campaign was to provide practical advice and tips to help people make informed decisions to improve their health.

#LoveYourHealth, which was centred around International Osteopathic Healthcare Week, showcased new patient-facing resource pages that the iO has recently developed around a number of key themes:

  • Getting active
  • Healthy aging
  • Sleeping better
  • Health at work
  • Understanding persistent pain

The focus of the social media campaign was to promote the positive role that osteopathy plays in supporting the health of our patients.

You can access the resources at www.iosteopathy.org/osteopathy-for-health and support the campaign by using #LoveYourHealth on social media. We would like to thank sincerely the members of ARMA who supported this campaign and shared #LoveYourHealth messages with their followers.

See #LoveYourHealth on Twitter.

EULAR has funded a project aimed at understanding the development, evaluation and implementation of mobile phone applications for self-management in patients with rheumatic diseases.

Following a systematic literature teview, the project task force is now at a stage where it would like to gain insights into the patient’s views, perceptions and current use of health apps for self-management.

EULAR therefore kindly asks you to fill in the following survey:
surveymonkey.com/mHealthAppsSurvey
It takes 5 to 10 minutes to complete.

Arthritis Action will be holding a new two-day Self-Management Event on 2-3 May 2018 between 2pm–4.30pm at Blackpool Central Library, Queen Street, FY1 1PX

The aim is to help attendees take control of the symptoms of their arthritis, covering topics such as:

  • The impact of physical therapies
  • How you can best manage your pain
  • The benefits of exercise and a healthy diet
  • Ways to work in partnership with healthcare professionals

This event will be free of charge and refreshments will be provided, and is open to all.

For more information, please contact info@arthritisaction.org.uk or 020 3781 7120 and Arthritis Action will be able to provide you with further details.

Alternatively, please register via this Eventbrite link.

The Hypermobility Syndromes Association, in partnership with Stickman Communications, hosted a Hypermobility Management Workshop on Saturday 25 February, with sections on exercise, pacing, flare-up plans, pain, and communicating about hidden disabilities.
The lecture-format sessions were in Hannah Ensor’s typical style – straightforward, with a dose of humour. The group discussions then provided a valuable opportunity to discuss and apply the information to daily life, sharing and exploring different solutions to the challenges we face.

Of course, being about pacing, what better opportunity to practice what we preach? Each ‘lecture’ was a maximum of 30 minutes, with wiggle breaks in between, and it was great to see the ‘beanbag corner’ being used as well as people standing up, moving and stretching when they needed to.

We asked Hannah Ensor, what was her favourite part of the day?

“Well, first I apologise for forgetting to put out plates with the snacks! But for me, there were two stand-out highlights: First, it was being reminded how incredibly useful discussing solutions with other bendies can be. During a discussion someone shared how their health care professional had recommended that they ‘pace’ their nutrition – so they don’t end up constantly having to rest after full meals, and instead eat little and often, which enabled them to avoid the post-meal crash. I am definitely going to look at whether this will help me too!

The second highlight was that every single person who handed in a completed feedback forms said they felt the workshop had improved their understanding of how to manage a hypermobility syndrome, and would be making changes as a result of the workshop. Which is totally awesome!”

Here are a few comments from the delegates:

  • “The formal sessions were excellent, but the opportunity to talk to others was the icing on the cake.”
  • “The session was fantastic, so useful and funny too! I learned so much.”
  • “[The most useful part was] the pacing info and being able to talk to others with HMS.”
  • “Very well presented in manageable chunks, delivered in a way that was very listenable to and easy to understand.”

Pain Alliance Europe are asking for responses to the 2018 edition of the Survey on Chronic Pain, which highlights how pain can affect the work-life of pain patients.

The charities who are members of Pain Alliance Europe (PAE) are inviting people with chronic pain or their carers to fill in this short survey on the effect of their chronic pain on their quality of life, their work situation and about any financial help they receive. The survey starts with some basic questions.

This is the second survey that PAE has created on the theme of chronic pain, in a series of annual surveys on the impact of pain. With each survey, PAE will analyse a different aspect of the impact of pain on the quality of life of the chronic pain patients in Europe.

A report will be created at the end of this survey, comparing the pain patients’ experiences in different countries. This report will be publicised by Pain Alliance Europe in order to reinforce their actions and promotions in order to make politicians and policy makers more aware of the important issue of chronic pain.

You can also follow @pain_europe on Twitter and share the poster [PDF].

 

The HMSA are busy preparing for their ‘Taking Action 2018-2022’ launch, which aims to guide strategy for the next 5 years. Part of that process is ‘The Big Conversation’ Members Consultation survey.

You can read about this and more from the February edition of HMSA’s e-news.
Learn more about:

  • livestream chats from HMSA’s resident occupational therapist;
  • the HSD Ambassador and Youth Patron preparing for the Hypermobility Management Workshop;
  • a consultation on the Call 111 campaign;
  • the helpline;
  • and an update from the CEO, Donna Wicks.

NHS England is consulting on proposals that will stop routine prescribing in primary care of over the counter treatments for a number of conditions, including the maintenance use of vitamin D. Receiving adequate vitamin D intake is crucial for current and future bone health and NICE Public Health Guideline 562 (PH56) states that a licensed dose of vitamin D, for prevention of vitamin D deficiency, should be widely available to at-risk groups.

The consultation recognises that vitamin D should continue to be prescribed for patients who are deficient and that it can be prescribed in combination with calcium for osteoporosis. However, vitamin D for maintenance is subject to restrictions and there is a risk that at-risk patients, may not purchasing it themselves (due to cost, accessibility or lifestyle reasons) or purchase a product which is inappropriate for their needs (due to ingredients or dosing levels). If you are going to respond to this consultation, consider raising the issue of availability of a licenced dose of vitamin D on prescription among at-risk patients. Let us know if you are responding.

Guest blog by Alison Trewhela, Director of the Yoga for Healthy Lower Backs Institute

Evidence-based exercise for people restricted by back pain, fearful of movement, in considerable pain, or with other illnesses and injuries, ‘Yoga for Healthy Lower Backs’ (YHLB) is a gentle 12-week mind-body exercise programme offering a potentially life-long solution.

Public Health England has recently included YHLB as one of seven evidence-based MSK options in their PHE MSK ROI Return on Investment Interventions report and online tool. Healthcare and public sector commissioners and well-being providers are hereby more easily able to choose cost-effective innovative interventions. YHLB shows a £10 return on investment for every £1 spent.

The ‘Yoga for Healthy Lower Backs’ programme was born out of a large research collaboration of academics, health economists, yoga teachers and back pain specialists led by The University of York and funded by Arthritis Research UK. The 313-participant randomised control trial compared this yoga programme and usual GP care against usual GP care and evaluated back function at the end of the course as well as 12 months later.

The findings showed that YHLB was effective for chronic low back pain for the long-term (Annals of Int. Med., H. Tilbrook et al, Nov. 2011; Vol 15 No 9).

An economic evaluation showed that YHLB would be cost-effective within the NHS, was a dominant treatment for society, and that it reduced work absenteeism by 70% over the 12 months studied (Spine Journal, 15th Aug 2012, LH Chuang et al).

To share this research and knowledge, as the lead yoga research consultant and designer of the YHLB programme, I have trained over 400 experienced yoga teachers nationwide and, along with others, have set up a social enterprise and training Institute. Teaching teams and regional Hubs are being established to improve ease of access.

Our ‘best practice’ ‘Yoga for Healthy Lower Backs’ structured programme was designed to offer person-centred self-management support and advice. Uniquely, it is unparalleled in its strong evidence-base.

Attendees learn how to use strengthening, mobilising, stretching and pain-relieving poses, relaxation and breathing techniques and postural awareness exercises that aid a return to normal activity levels at work, home and leisure. They gain extra psychological support from group learning and benefit from positive ‘side-effects’, such as reduced time off work and improved mood.

Importantly, this is a specialised yoga course, designed for those with persistent, episodic or recurring back pain. However, it is equally true that if you have a lower back (!) and want it to be healthy, you can attend this gentle yoga course and learn how to help yourself to improved comfort, health and well-being for now and the future.

It is a ‘mind-body package of care’ that can easily be integrated into daily life. Offering a manual, relaxations CD, practice sheets and hand-outs, the 12 classes teach people to self-manage their back pain, whilst encouraging long-term changes in increased physical activity and improved well-being. A recent study showed that YHLB attendees had a 63% improvement in feeling able to manage their back pain by themselves.

Through ARMA, we have been able to connect with many organisations in the musculoskeletal field with which we share similar goals. Through these connections, we are continuing to make progress in taking the results of the research out to those that it would most benefit, i.e. those with back pain, but also health professionals and commissioners.

Amongst other regions, the YHLB programme is being successfully piloted by the NHS in Cornwall, as follows:

  • GP surgeries (n=5) subsidizing course costs
  • ‘Social prescribing’ scheme
  • Subsidised courses for Primary Care staff
  • Teaching Team and Regional Hub

The evidence from the research contributed significantly to the evidence NICE evaluated in their Guidance on low back pain and sciatica which mentions mind-body exercise, such as yoga, as a first step to managing low back pain.

In the light of the recent Government Paper Improving Lives, The Future of Work, Health and Disability, a social franchising model to take this successful and evidenced Yoga forward as an early intervention treatment option is being explored. The Government paper states “Early intervention and access to treatment and support were critical to preventing the progression of ill-health and preventing people falling out of work.”

One YHLB course attendee called it “a life-changing experience after years of frustration.”

As a specialist tutor for Yoga and Research at University of Exeter Medical School, I know how hard is has been in the past to find yoga programmes with strong evidence-base, so all this is fantastic news for those with back pain, referrers and commissioners.

Further information at www.yogaforbacks.co.uk or email YHLBInstitute@gmail.com

by Jane Green BSc. (HONS) Psych., PGCE, Av.Dip. Ed. Child Development, MA Ed.  (Leadership and Management / autism)

Why did I stop working in my professional career?

Two-and-a-half years ago I medically retired. This was after years of pain following full dislocations; half-dislocations; sprains; tears in joints, muscles, ligaments and tendons; and arthritis. I received my diagnosis of Ehlers-Danlos syndrome 3 (now hEDS) and associated conditions later that year.

As a child, I did have a few problems with joints and did ‘party tricks’. Whilst bringing up my sons, one with significant medical and neurodevelopmental difficulties, I was passionate about improving autism practice. The OU offered me opportunities without my needing previous qualifications. I won two awards. I had two knee operations in 2003 but was not offered any physio afterwards. It took me nearly a year before I could walk unsupported. In 2006 I was shortlisted for the EP doctorate and offered a place. Unfortunately my knees were unstable and deconditioned, so it made commuting to London impossible. My career then comprised of schools: I was special needs teacher at Young Epilepsy, Advisory teacher for the Local Authority, Lead Educationalist/consultant for the National Autistic Society and Autism Education Trust, Strategic Assistant Head teacher and DfE Autism Education Trust trainer for Ambitious about Autism.

Often, as key speaker at conferences, I would approach the rostrum wearing a microphone and all you could hear were bones crackling, snapping and occasionally popping. There would be a stunned silence. At first I tried to ignore this, but with experience I learned to announce the additional noises to the audience. Speaking at MDT meetings I had time to talk to smaller groups on their tables. I soon came to recognise the look on the face of some delegates (disbelief- face), knowing then to check if my arms or legs were out of place and adjust them, whilst asking the delegates if they were occupational therapists/physiotherapists – which they undoubtedly were! As I was the key speaker holding conferences together it put a great responsibility on my shoulders (excuse the pun) just to be there. So I continued, despite multiple injuries, increasing inflammation and pain.

Throughout my career I tried to stay working. EDS is a variable condition, but without management it became unmanageable. I received drugs for inflammation and referrals to MSK departments. By then I received a diagnosis of hypermobility and discharged. Unfortunately, it took five months to be seen by MSK after the initial event (which was a dislocated ankle with several other injuries).

This delay meant:

  1.  I was not believed
  2.  I couldn’t remember all the facts or what it looked like five months before
  3.  the amount of time escalated other injuries

I was then told categorically “we all have aches and pains at [my] age”. This brought about a defence mechanism in me: I knew that medical resources didn’t know what to do with me. When my shoulder dislocated with tendon tears, I continued working with an increasingly painful but useless shoulder and arm. All this time, I was also a carer. My GP said there was a pain management course. However, the advice given was impossible for me. When I asked what to do as I was hypermobile, I was told ‘this isn’t a course for you’.

I had often limped and used a walking stick at work. Once, over a period of two days, an older injury to ankle ligaments resurfaced in my other foot, so I swapped the walking stick to support that leg. Comments made to me in the office were:

Oops, did you forget you were limping on the other leg last time?”
and “My son dislocated his shoulder but it popped back in and he just got on with it.

I found it difficult to explain to them how much pain I was in because I didn’t understand it myself. There a was no pathway and to some extent I thought that maybe everyone suffered like me.

The hot-desking policy at work caused me stress so I asked for a set desk, a chair with arms, a foot pedestal and drawer of files placed nearby. After a health assessment I was given a set place for ‘reasonable needs’. This meant me getting on the floor to dig out my foot rest, finding a chair that moved multi-directionally with hand rests, and a subsequent hunt for suitable drawers after my two-and-a-half hour commute.

I get a lot of muscle spasms which are agony. I tried to use the quiet room to stretch but it was never available. I was sent to my organisation’s physiotherapist, usually used for students and staff. The physiotherapist tried, but I recognise the face of confusion and disbelief quickly now. I was told to go elsewhere. My last injury meant that I could not sit down for over a year.

As EDS UK Support volunteer Area Coordinator for Surrey/Sussex, I was asked to attend the Crawley ARMA event and NHS England conference as patient speaker. EDS UK Support is proud to be a member of ARMA. As a small charity, membership is a great way of keeping up-to-date with changes in government policy that affects our community and it gives us a voice as part of an alliance when EDS doesn’t have the resources to do that type of work directly.

The timely, effective and responsive assessment and management of patients using the Patient Advice and Information Lines (PAIL) leads to improved quality of care and patient experience.

Whilst a number of the Patient Advice and Information Line calls are related to clinical concerns, patients, family and carers often talk about other life events that may impact on their treatment and management plan. Clinical Nurse Specialists and Members of the Rheumatology Multidisciplinary team need to be responsive with a wealth of knowledge and experience; they must also be imaginative with a bit of Health Service/ Community Care “common sense” to support these patients through these life events.

Colin Beevor, Matron from Portsmouth Hospitals NHS Trust has used data from previous PAIL calls to develop the “Rheumatoid Arthritis – Game of Life” board game to equip all Clinical Nurse Specialists and members of the team necessary knowledge and skills to manage patients over the telephone.

In this fast-changing era of medicine, the board game offers the opportunity to increase knowledge and stimulate discussion and learning within teams.

Colin Beevor: “The board game has been developed with Lilly UK and was launched at the 2017 Nurse RESPONSE Forum in London on the 23rd December 2017. I had a lot of fun working through the scenarios, which act as practice development tools for those working with people living with Rheumatoid Arthritis. The game also has potential to be further utilised in the education of patients, family and carers and the wider community of primary care team members.”

Alison Kent, Chairperson at the Response Conference: “The community of Clinical Nurse Specialists and members of the multidisciplinary team are very skilled at managing patients, but often there are life events that mean we need to rethink patient management plans. During the three workshops at the conferences the board games were well received by the delegates, and many asked if the board game could be taken back to their own department as a teaching aid.”

Jenny Kynes, Head of Nursing, Musculoskeletal Service Centre, Portsmouth Hospitals NHS Trust: “We are always looking at new ways of providing nurses with education; whilst there may be insufficient evidence in the literature to either confirm or refute the use of such learning, it looks like the board game was received well by the delegates and achieved its main aims, at bringing fun, to increase knowledge and to stimulate discussion around supporting patients with Rheumatoid Arthritis.”

Flare Roller Coaster for People Living with Arthritis and Connective Tissue Diseases

The Next Rheumatology Flare Roller Coaster workshop will be held on Saturday 3rd February 2018, from 09:30 -13:00.
Venue: Fracture Clinic – C Level, Queen Alexandra Hospital, Cosham PO6 3LY

Places are limited so please register early.

To book your place or receive more information, email: rheumatology.conference@porthosp.nhs.uk or telephone 02392286935

For frequently asked questions about our Flare Rollercoaster workshop, please see our leaflet [PDF].

If you have arthritis or a connective tissue disease, the festive period can be tough. For starters, the months of December and January come at the coldest time of year, which can cause more problems, and although cold weather doesn’t cause arthritis or connective tissue diseases, it may increase joint pain and possible flares.

Colin Beevor, Matron: “Sometimes flare-ups can’t be avoided, no matter how hard you try. If you start to feel increased pain or joint stiffness, take action.”

There are many self-management treatments that can help reduce joint pain:-

  • Hot/warm packs and even warm baths can soothe painful joints and relieve stiffness;
  • Ice packs can relieve pain, reduce inflammation, and cool down joints during flare-ups. Remember: do not apply heat or ice packs directly to the skin or for more than 20 minutes at a time;
  • Topical cream or gel that contains the nonsteroidal anti-inflammatory drug NSAID. Ask your local pharmacist before using a topical treatment that contains NSAIDs particularly if you already take over-the-counter or prescription NSAID tablets.
  • TENS Machines – Transcutaneous electrical nerve stimulation machine administers mild electrical currents through the skin to the nerve fibers which can help to block or suppress pain messages.

 

Keeping Active

Although arthritis and connective tissue diseases and exercise may not seem like a natural match, staying active can definitely help your joint pain.

Getting out in the fresh air has proven benefits to your health, from strengthening your muscles to improving your blood pressure and helping with a good night’s sleep, spending time in the open is good for your health.

Swimming is a form of exercise suitable for all age groups. Even if you are not a strong swimmer or have non-swimmers in your family it is a great way of spending time together and getting fit whilst doing it. Swimming is a great low-impact activity that helps burn calories, strengthen muscle mass, and improve cardiac endurance.  The water allows your body to exercise without impacting too much on the joints; this makes it an ideal exercise for those with stiff joints, sore muscles. If you find going to the swimming pool very cold, a tip is to wrap your towel and clothing in a hot water bottle.