Twenty Years as a NASS Group Physio

Last year our NASS group celebrated it’s 20 years anniversary. This gave me time to reflect on what changes have happened in this time. In 1998 Tony Blair was at No 10, Bill Clinton was in the White House, Britney Spears was in the charts and Titanic was in the cinemas. In the world of Ankylosing Spondylitis, exercise and anti-inflammatories were the mainstay of treatment, anti- TNF treatment was a whisper and anti IL-17 treatment unheard of. NASS was run almost single handily by Fergus Rogers. And X-ray was the main diagnostic tool.

So where are we now? Well as I write I’m unsure who will be at No 10 and Donald Trump is the president of America. As with the world of politics the world of ankylosing spondylitis has totally transformed. Axial Spondyloarthritis (Ax SpA) is now the more favourable, inclusive terminology, with NASS voting to become the National Axial Spondyloathritis Society last month. Diagnosis, although still taking too long, has been aided by the easy access to MRI and we are now able to identify people at much earlier stages of disease. In May BRITSpA set out new recommendations on acquisition and interpretation of the MRI to help in diagnosis of spondyloarthritis. This will hopefully aid clinicians, as well as standardising practice and ensuring a consistent approach to diagnosis.

Biologics have totally revolutionised the medical management of the disease and should be offered to patients who haven’t responded adequately to anti-inflammatories. I saw my first patient on biologics in 2000 who was taking part in an infliximab trail. I was amazed how her live had been transformed.  After the treatment she could sleep through the night, had minimal morning stiffness and could manage to live an active life without constant fatigue. Having seen people suffer with Ax SpA for years I was amazed how this new treatment gave her a normal life.  In the 2017 NICE Guidelines for Spondyloathritis, 6 biologics are recommended treatment for adults over 16 years. This gives people with the disease more treatment options to improve their condition.

NASS has matured. It now has 11 staff and over 3,400 members. It provides support to people via Twitter, Facebook and Instagram as well as a website and a helpline. They have a Back to Action exercise App and they have numerous information video clips on YouTube. It is involved in NICE guidelines, Parliamentary lobbying and it’s new Aspiring to Excellence Programme.

So, what has happened to our NASS group.  It has been run at 6 different venues including the physiotherapy gym, school swimming pool and now a school gym. We have tried lots of different types of exercises as well as the more traditional gym and pool work including Nordic Walking, pilates, tai chi, walking football and netball. We’ve done sponsored walks, had educational talks and recently held our first ‘gig night’ that raised over £800. Our membership has peaked and toughed over the years. There was a low point about 10 years ago when we only got 3 or 4 members a session and struggled with finances. Whether this was due to dawn of biologics, an increase in gyms and local exercise facilities it’s difficult to know. In the last 5 years however, the number have slowly increased and we have gone from being predominantly a male group to now being more or less 50:50 male to female, with an age range from 25-81 years. The group is now bigger than it’s been for many years. We have fun, lively sessions with members pushing themselves hard to exercise and enjoying some healthy competition playing walking netball or football. About 1/3 of the group take biologics.

Before I wrote this blog I asked the members a few questions about the group, here are some of the responses:

How long have you been attending the NASS group?

Range from 3 month to 20 years

How long was this after you were diagnosed?

Range from Immediately to 20 years

What was the main reason you started attending at that time?

Encouraged to do so by another member. Plus an unavoidable sense that my stiffness etc was getting more pronounced.

Heather suggested it again and there was the opportunity to do Hydrotherapy and try pilates

Was told about the group by the physio who did my initial assessment. He told me it was pretty much vital to managing the condition that I attend; he pushed me to it before denial could set in!

To help my condition, to exercise and to be with other people who have AS

Were there any reasons why you didn’t attend before?

Laziness. Denial. Pathological fear/dislike of “gyms”. Not sure I would get on with the others who attended. But laziness above all else.

Difficulty of getting there for an 18.15 start.

 Child care and out of comfort zone

Didn’t know about the NASS branch

What are the main things you get from attending the group?

Huge variety of exercises and activities, some of which can be re-used at home. On-the-spot advice in relation to any particular aches and pains. And a great bunch of people – really nice to chat to others who’re in the same place, right across the age range. I generally feel a bit fitter and brighter.

It means I get out of the house and I don’t have to cook tea!

Stretching exercises; a fixed definite weekly exercise session – I’m much better at keeping to an external commitment than doing exercise at home.

Targeted exercise on a regular basis to help manage the condition. Social interaction with other members and sharing of experiences. Having fun together.

Meeting others with a similar medical problem and seeing how they cope

 The reasons for not attending the group are varied but the reasons for attending are very similar: exercising, with people who share the same experience and having fun while doing it. I never imagined I would still be running the same group 20 years on, but I still love my Tuesday evening sessions for the same reasons the members enjoy coming. There are more things we can still achieve in the world on Ax SpA, a reduction in time to diagnosis, more biologic options and equality of service throughout the country. Here’s to the next 20 years.


Heather

Bhangra therapeutic dance - exercise & Axial Spondyloarthritis (AxSpA)

Movement or Dance therapy refers to a broad range of eastern and western movement working out one’s body movement to improve her/ his cognitive, physical, mental and emotional wellbeing. Dancing counts as one of the moderate physical activities, dance therapy developed in popularity in the last 10 years and several therapists started using modulated dance therapy to enhance their patients’ general flexibility, muscle coordination, balance and mobility. Dancing has been evidenced also in reduce chronic pain, stress, anxiety and depression levels and improvement of self-confidence.
 

Being a rheumatology physiotherapist, I am aware that my patients with widespread pain patients need different motivational approaches to get active, and have tried innovative practices (Tai chi, game based activities, line dancing, therapeutic yoga approaches, etc.) and found them effective in engaging patients and assisting them towards their physiotherapy goals.  I always believed dancing is therapeutic, can be adapted to suit an individual’s fitness level, gently be introduced, paced and progressed/regressed.  Alongside improving physical benefits, dance therapy provides plentiful emotional benefits too. While dancing, physical activity increases releasing neurotransmitter substances in the brain (endorphins). This creates a state of well-being and thereby enhances the functions of other body systems. The same endorphins that make one feel better when moving also helps us to concentrate and sleep better, increases energy levels and can help us to become more resilient to face various mental or emotional challenges in life.

Bhangra dancing In the 1940s, a classical folk dance named Bhangra was traditionally danced during the harvest time in Punjab (North West India & North East Pakistan). This dance initially used short Boliyan lyrics and a large double faced musical instrument Dhol which was then replaced by smaller & western musical instruments, popular music and dance styles in south Asian communities of the UK. In the mid-20th century, bhangra dance included many forms and adaptations, gained popularity worldwide, as a regular feature in celebrations. The music and dance both intoxicating & energetic empower the participants and the audience with a fun-filled full body work-out.

2014-2019

In 2014, I undertook a pilot study in Bollywood dancing at our local Northern Lincoln and Goole NHS Trust (NLAG) NHS trust with patients diagnosed with general arthritis and Axial Spondyloarthritis (AxSpA). The music beats and gentle Bollywood moves were well-liked and enjoyed by patients as well as our staff groups. I delivered a Bollywood workshop at our AStretch National conference to therapists, students and few multidisciplinary team members and received excellent feedback from all participants. After having this experimental approach, I wanted to expand to other types of movement therapy.

May 2018 I happened to watch a dance competition show with bhangra music. The music beats were so enchanting that I found both my shoulders /arms robotically move up/down along with the beats. At that time, I reflected to neck/upper trunk postural problems with most of our patients’ and several of our staff members; this multiplied especially due to the recent increased use of computers and mobile phone usage. This prompted me to trial out bhangra music/dance beats with my next novel exercise choice.  I started researching about Bhangra music/dancing and with my husband‘s support who has Bollywood dance expertise, I picked up some music beats and started choreographing easier manageable dance steps.

Between June and August 2018, Raj and I tried Bhangra dance with our hospital staff members as a part of our Trust well-being programme. This was welcomed as a great energetic and entertaining full body work-out.

In September 2018, I introduced a modulated version of the Bhangra dance-exercise steps with our local Grimsby National Ankylosing Spondylitis Society (NASS) group members. The members enjoyed the dance work-out and evaluated the session to be different, enjoyable, fun-filling, and energetic and did not report any adverse effects.

June 2019

When NASS staff approached AStretch for volunteering exercise workshops at their annual NASS member’s day on the 08/06/2019, I offered to conduct a Bhangra Therapeutic dance exercise workshops and was gladly accepted. Two of the NASS group members travelled to present our local innovative practice at the members’ event. Three groups of NASS members diagnosed with axial SpA attended the workshops and provided feedback.

Approximately <150 people attended the workshops. General feedback was excellent; the attendees ticked one of the four remarks – enjoyable (45), entertaining (45), energetic (45) and everyone –generalizable (39). 

Other Comments received from Bhangra Therapeutic dance-exercise workshop participants

·         Best fun all day

·         Different approach but very fun

·         Excellent

·         Fun, fantastic and fabulous presentation.

·         Fantastic smiley lady teaching the session

·         Great fun, Good laugh, it “killed” my shoulders but Loved it

·         I enjoyed very much but found it difficult to keep in time

·         New experience Nice to try something new

·         Terrific, too much PowerPoint, No warm up, Thank you, this workshop was brilliant.  I really enjoyed it.  It was fun, too much co-ordination needed

·         Very energetic and great fun, Very good, Very good exercise

·         We both enjoyed it, Wonderful, wished we had classes near to us in Essex

The least positive comments received were only that the exercise was fun not that easy, needs co-ordination and so tricky to follow by everybody

Conclusion: Bhangra therapeutic Dance-exercise was accepted, well liked and enjoyed by the NASS members.  Such innovative practices if modulated and guided by appropriate health professional would promote activities and general wellbeing to all, and especially prevent inactivity and chronicity in our axial SpA cohort. 

References

Balaji Deekshitulu (2019). P V ‘’Physical & Mental Health for Indian Classical Dance’’ Review Article of American Journal of History and Culture Cross Ref citations to date
Chartered society of physiotherapy: Public Health England to issue new guidelines on promoting activity. Researched on 09/06/2019 available on: https://www.csp.org.uk/news/2018-11-23-public-health-england-issue-new-guidelines-promoting-activity
Chatterjee, Arpita (2013). “An analytical discussion on the folk and tribal dance forms of Bengal in relation to their effect on health.” Indian Journal of Arts, Vol. 1. No. 3, pp.29-32.
Chatterjee, Arpita (2013). “Improved health status through prolonged practice of dance as a therapy – a case study.”  International Journal of Basic and Applied Medical Sciences, Vol. 3, No. 1 pp. 180-183.
Dutt, Amita (2008). “Some Indian Dance Forms: Kathaka, Bharatanatyam, Kucipudi.” History of Science, Philosophy and Culture in Indian Civilization, vol.VI (Part I): Aesthetic Theories and Forms in Indian Tradition. New Delhi: PHISPC, Centre for Studies in Civilizations, 2008, pp. 427-489.
Gov.UK (2019) Start active, stay active: infographics on physical activity published 28 July 2016 Last updated 15 October 2018, Researched on 10/08/19 Available on:
https://www.gov.uk/government/publications/start-active-stay-active-infographics-on-physical-activity
 Gibb Schreffler (2013) ‘’situating bhangra dance: a critical introduction’’. South Asian History and Culture Volume 4, Issue 3
Jenny Blair, MD (2017) ‘’Aquatic dance could offer lasting benefits for older obese women with knee osteoarthritis’’ Clinical Essentials 6 Feb 2017


Susi

A turn for the better

Having the chronic disease axial spondylathropathy (AS), has had its advantages.  It has given me the opportunity to be part of a complex, evolving and fascinating world.  Before my symptoms really kicked off whilst working in New Zealand, I was destined to follow a long career in general outpatient physiotherapy.  Now looking back, however, I had rather fallen into rather than chosen this path. 

In 1992, following my spell recuperating from reactive arthritis (see previous blog for more information) and under the expert care of Dr Ian Gaywood at Swindon Hospital, my journey began.   My role as metrologist soon expanded into clinic work encompassing all aspects of patient care and assessment.
At a time when outcome measures were not yet standardised, I then joined Dr Calin and his team at ‘The Min’ in Bath interviewing patients in preparation for the Bath indices.  These were exciting times.

Subsequently, I heard about the inspirational work of physiotherapist, Sue Fletcher, and her team of Allied Health Professionals (who were mainly Physiotherapists) at Christchurch Hospital.  As part of her dedicated rheumatology follow-up clinic, I continued to be mentored as I learnt to decipher blood results and X-rays, and advise patients on their (rather limited at that time) medication.  We were shown how to inject shoulders, wrists and knees.  We were ahead of our time but few people knew of our existence. 

In 1994, acknowledging the need for more formal training, the whole team were encouraged to undertake a specially devised Post Graduate Diploma and Masters course in Advanced Clinical Rheumatology at Bournemouth University. This comprehensive 2 year course was compiled by Sue Fletcher and Dr Karen Mounce, Consultant Rheumatologist at Christchurch Hospital. 

Once graduated and buoyed up with enthusiasm, we decided to call ourselves Rheumatology Practitioners. We thought that as an army of practitioners we were going to conquer the world!! Sadly this was not to be the case.  After we had graduated, the University course was never repeated and that is a great loss.  The course relied on undergraduates being part-funded by their hospital but at the time, few hospitals shared our enthusiasm or had the funding.

However, armed with the skills and confidence, I decided to start up more rheumatology follow-up clinics closer to home.  Despite being a Physiotherapist and not a Nurse (who traditionally took these roles), I managed to convince the medical staff at both Salisbury and Southampton hospitals that they needed me as  a side kick to lessen their load and that I was also good value for money!   The Consultants were extremely trusting and supportive in my work with the patients and they had an open door policy in times of need.  Patients were happy to be seen by someone who could empathise with their symptoms, was at the end of the phone in times of need and could offer them the time they needed in clinic. We were still pre-biologic therapy at this point so care needs were complex and drug side-effects were a constant issue.

Salisbury and Southampton had an excellent Physiotherapy and Occupational Therapy department and all my patients spent time in these departments as part of their programme.  Although I was not working as a traditional Physiotherapist, my previous experience in MSK came in useful and with the support of NASS,  I over saw the creation of the Southampton and Salisbury NASS exercise groups.

Then, the late, great, Physiotherapist, Jane Barefoot nominated me as Physiotherapy Advisor to NASS; but walking in her footsteps proved to be a difficult task.  I felt I could not carry the burden alone and that patients so desperately needed more help.  A group of rheumatology physiotherapists heard my cry for help and AStretch was born in 2001.  The not-for-profit organisation has subsequently grown into to what it is today making a huge impact in patient care and knowledge dissemination. 

Meanwhile I continued my work as Rheumatology Practitioner and I really felt that I had found my calling.  For nearly a decade, I enjoyed helping to solve complex issues, gaining knowledge and making good friendships with the patients and staff.  When I left work in 2004 to look after my young daughter, biologics were in their infancy and life for the staff and patients were about to change radically.  Sadly it took many more years before AS patients could benefit from Biologic therapy but I can talk from experience, it has been a life saver.

Nowadays there is so much more help, support and guidance for patients with AS.  NASS now employs 10 staff and amongst many other initiatives, is involved with parliamentary campaigns to increase the profile of AS and AStretch is an integral part of the organisation. 

In hospital departments across the land, rheumatology is taking centre stage and there are Allied Health Professionals working as clinical specialists making a big difference.  Many of the frontline staff are members of AStretch and many have contributed by attending AStretch courses and conferences.  As a member of AStretch, I feel privileged to be working alongside physiotherapy colleagues so passionate about the care and wellbeing of AS patients and their families.  It has been so rewarding and such a pleasure to be part of this world and I consider myself lucky as my career would never have gone in this direction without my AS.

Juliette

Are you fully utilising the skills of your Rheumatology Occupational Therapy Colleagues?

Work issues the patient tells you!!! – How confident do you feel with the answers and recommendations you can offer? Is there someone better equipped with the knowledge and support within your team??

After setting up and sitting in the newly reformed Multi-disciplinary Spondyloarthopathy (SpA) service combining medical, nursing and physiotherapy input the patients’ needs we believed were being met within the one-stop clinic environment- or were they?

Time and time again fatigue, functional difficulties and especially work issues were being highlighted by patients as personal problems and discussed briefly but how effective was this. Leaflets and websites were offered as additional support and the patient encouraged to take on-board the advice given.

Reflecting on these issues I looked at the number of extra referrals that were being made to the Occupational Therapy (OT) department, this was variable and often the patients declined or failed to attend. Would it be beneficial to bring an OT within the clinic set up?  What evidence did we have to support such a clinical decision and were we looking at the correct outcomes to justify a change in local practice of the OT team?

The Ankylosing Spondylitis Quality of Life (ASQoL) , Ankylosing Spondylitis Work Instability Scale (ASWIS) and a specific highlight of the fatigue (question 1) on the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) were introduced. Locally we discussed and agreed upon a referral indication number for each outcome and then monitored the results. (ASQoL >10/18, ASWIS >12/20, Fatigue > 6/10). The number of potential referrals increased by >70% in one or more of these areas.

The OT was introduced as a pilot, using the outcome measures and patient feedback to monitor the perceived benefits. It was an instant success with patients especially benefiting from vocational advice and is now an integral part of the SpA service. It is perhaps timely that the NHS Long term plan 2019 has acknowledged the importance of vocational health and using work status as an outcome. It also stipulates that personalised care plans should support and offer reasonable adjustments in order for people to manage their condition in the work place

Work issues in the form of absenteeism, presenteeism and changes in roles are often divulged with patients becoming potentially anxious and stressed. As a team we decided to use the ASWIS as a work related outcome rather than the work productivity and activity impairment questionnaire (WPAI) to look at potential instability risk factors and try to address these as a precursor to actual impact on productivity and overall job security.

Below my colleague Christine Mate, Senior Occupational Therapist has discussed her role within the clinic and her thoughts on what she feels OT has to offer a SpA service with the emphasis on work issues.

As an OT my role has included providing advice and education on how to manage the symptoms people experience due to inflammatory arthritis, including pain, fatigue and pacing, but for some reason, our team were not receiving many referrals for patients with SpA. This may have been due to patient’s lack of understanding to what help an OT has to offer, or time restraints and pressure of work preventing additional hospital visits.

I knew from my experience working with patients with RA, that assessment of activities of daily living, including addressing work related issues, such as work station assessment, ergonomics, pacing and energy conservation, were helping patients to stay in employment.

Work disability and absenteeism can be common in people with any form of inflammatory arthritis; up to a third of people with RA can stop working within three years of diagnosis.  Many factors influence work instability including unadapted work environments and equipment, physically demanding jobs, poor self-management strategies, all at a high cost to the individual, employer and society.

Since becoming part of the MDT within the SpA clinic, I have seen many patients who are struggling with employment due to pain, fatigue, lack of support at work and poor self-management skills. Most people do not realise that slight changes or adaptations at work, including changes to their working day, aim to reduce some of their symptoms and improve their ability to manage tasks, which ultimately may improve job retention.

I have found, after discussing the issues with patients that the employer is often unaware of the problems and has a lack of understanding regarding inflammatory conditions.  This is not surprising and obviously is due to a lack of communication between the two parties. On most occasions I have found employers supportive and usually a letter detailing the issues and providing recommendations regarding changes is adequate.  I have also completed work visits, to assess work stations for small companies that don’t have occupational health support or the patient has shown concern that they may not be supported by their employer. 

For many of our patients, we are able to sign post to other organisations, such as Access to Work, who will provide work place assessments and will assist small companies with funding.  Many patients are independent and have the confidence to approach their employer, or occupational health, once they have the facts, have a supporting letter and understand their rights as an employee. Functional difficulties at work, can be a struggle to address, but we have had success supporting people to change their role within the company, enabling continued employment, which may involve retraining and continued support by the company or employer. It also appears that we have more success if the issues are addressed in the early stages of treatment, as patients who have already stopped working, don’t tend to rejoin the job market.

The MDT clinics have proved popular, with patients giving positive feedback and valuing the information and education provided.  These one stop approaches allow health care professionals to address most of the problems highlighted within one patient visit, with the additional benefit of reduced time off work time to attend appointments.

So the next time you sit in clinic with your patient who is highlighting work problems, just sit back and think if you are the best person to address this particular issue. Is there someone in the team who can offer the additional support in a variety of ways – Are you utilising your Occupational Therapy colleagues??

With thanks to my colleague Chris Mate Senior Rheumatology Occupational Therapist


Louise Preston

Beyond "Physio’s Orders”

Exploring Adherence to Physiotherapy Exercise Programmes and Advice

As rheumatology physiotherapists we specialise in the assessment and treatment of people with axial Spondyloarthrits (AxSpA). We know from experience, and from the literature, that physiotherapy prescribed exercise and advice can improve and maintain spinal mobility, physical function and help people with AxSpA lead an active and independent life. However, I learned early in my physiotherapy career that people didn’t always do exactly what I asked them to do. People frequently didn’t come back for their physiotherapy appointment or couldn’t demonstrate their exercises or simply told me they couldn’t manage them. At times I wondered was it me? What was I doing wrong within my practice that meant people didn’t follow my instructions? I started to explore the problem of non-adherence.

Adherence refers to the extent to which a person’s behaviour corresponds with the recommendations from a healthcare provider (Sabete, 2003). The term adherence acknowledges people have a choice on whether or not to accept the advice or treatment a healthcare provider offers. With physiotherapy non-adherence to exercise programmes can reach 70% (Peek et al 2016, Beinart et al 2013). Our recent systematic review found that within Spondylarthritis (which includes axial SpA) adherence, although not always reported well, not one study reported full adherence to a physiotherapy exercise programme (McDonald et al 2019). How many of you have signed up for a gym membership or a 10k or a new year’s resolution and never manged the training – I know I have. The problem of not always managing to do as we should do spans all health conditions and all of us and is not an easy problem to fix. So where should we start? Here are some nuggets of information that I have learned as I have explored adherence and non-adherence…

Acknowledging and Exploring the Problem.

People may be non-adherent for different reasons (Donovan & Blake, 1992). Some people may simply forget the information or advice that we have given them. An early study by Ley, (1973) found people forgot verbal instructions after five minutes. Written instructions and/or setting up reminders of how and when to exercise may help. Goal setting with individual’s and exploring barrier and facilitator’s may also help. This has been shown to improve adherence in other health conditions (Farrance 2016, Hill 2011). For example, if a person’s goal is to improve their posture – how often do they have to do their exercises to achieve this? What barriers might get in the way – time, work, motivation are things I hear often. What might help (facilitator’s) achieve this; could they incorporate exercises into their day; stretches after brushing their teeth, a five minute walk at lunch time. Or a reward when they have achieved what they set out to do. I know I keep a stash of Freddos for after I’ve been running.

What should people do when the ‘fall off the wagon’ and haven’t managed to exercise for a long-time? How do we motivate them to start again? I don’t have these answers. I try to be understanding towards our service users and reassure them that maintaining an exercise programme with a long term chronic health condition is difficult but to try to keep going – and so back to the goal setting, barriers and facilitator’s.

Enjoying the exercises has been shown to be a facilitator to exercise (McArthur, 2014). Our NASS class plays hockey, badminton and (once!) dodge ball – I have to say I think I might enjoy it just as much as the group. Maybe future physiotherapy departments will offer dance rehabilitation and trampolining – maybe you already do? Supervision was also found to increase adherence within our review (McDonald et al 2019). Realistically this can’t always be face to face physiotherapy supervision, for some this might be a friend/family member or NASS group they could exercise with them, or digital resources such as online physiotherapy. Exercising in a group is motivating for some. The local park run or vitality class maybe good links for some alongside the daily stretching. Educational programmes play a role in adherence to exercise – taking the time to explain the pathophysiology of Axial Spa and importance of physiotherapy exercise is greater than simply saying do these exercises.

Adherence to physiotherapy exercise and advice is complex and multifactorial. I don’t pretend that I have all the answers. With a team of researchers lead by Professor Lorna Paul and Dr Stefan Siebert we are hoping to understand adherence better as we have meticulously recorded adherence to a webbased physiotherapy programme for one year (www.webbasedphysio.com). Our service users liked the support they received and found the programme accessible and user friendly. We are currently writing up the results.

With research in osteoarthritis indicating that higher adherence improves clinical outcomes (Pisters et al 2010), it make sense that we try to improve adherence to our prescribed exercise programmes and advice.  I know there will be other ways in which you have supported your patients to initiate and maintain exercises programmes and if you have any golden nuggets to share I would be delighted to hear them – please get in touch (@mariemcdonald3)

References
Beinart NA, Goodchild CE, Weinman JA, Ayis S, Godfrey EL (2013) Individual and intervention-related factors associated with adherence to home exercise in chronic low back pain: a systematic review. Spine J 13:1940–1950
Donovan, J.L. and Blake, D.R., (1992). Patient non-compliance: deviance or reasoned decision-making?. Social science & medicine, 34(5), pp.507-513.
Farrance C, Tsofliou F, Clark C (2016) Adherence to community based group exercise interventions for older people: a mixed-methods systematic review. Prev Med 87:155–166
Hill AM, Hoffmann T, McPhail S et al (2011) Factors associated with older patients’ engagement in exercise after hospital discharge. Arch Phys Med Rehabil 92:1395–1403
Ley, P., 1974. Communication in the clinical setting. British Journal of Orthodontics, 1(4), pp.173-177.
McArthur D, Dumas A, Woodend K, Beach S, Stacey D (2014) Factors influencing adherence to regular exercise in middle-aged women: a qualitative study to inform clinical practice. BMC Womens Health 14:49
McDonald, M.T., Siebert, S., Coulter, E.H., McDonald, D.A. and Paul, L., (2019). Level of adherence to prescribed exercise in spondyloarthritis and factors affecting this adherence: a systematic review. Rheumatology international, pp.1-15.
Peek K, Sanson-Fisher R, Mackenzie L, Carey M (2016) Interventions to aid patient adherence to physiotherapist prescribed self-management strategies: a systematic review. Physiotherapy 102:127–135
Pisters MF, Veenhof C, Schellevis FG, Twisk JW, Dekker J, De Bakker DH (2010) Exercise adherence improving long-term patient outcome in patients with osteoarthritis of the hip and/or knee. Arthritis Care Res 62:1087–1094
Sabaté E (2003) Adherence to long-term therapies: evidence for action. World Health Organization, Geneva


MT McDonald

One Click Away

A Personal Review of the NHS Long Term Plan in the Digital Era

With the release of the NHS Long Term Plan in January 2019,  the reality of the challenges ahead for the NHS were clearly outlined in the introductory ‘Three Big Truths’ –Pride, Concern and Optimism -  and what best NHS patient care may look like as we move forward with uncertainties into a digital era for healthcare.

The three big truths rang true for me on a personal note - The Pride- for having worked for 21 years in the NHS and the incredible journey I have been on – the Concern I experience- for the lack of progress in addressing inequality of care– and the Optimism I have - that care has the potential to be redesigned in the digital era for the benefit of all.

The question up for discussion in this blog is ‘how might the NHS Long Term Plan be an enabler to improve care for those with Axial Spondyloarthritis (AS)?’  I have narrowed my question down to focus on AS but the problems and the solutions apply across the broad spectrum of out-patient care in rheumatology services across the UK.

My ‘Digital Health Hat’

I last wrote a blog for AStretch in 2018 about a ‘Portfolio Career’ and the various ‘hats’ I wear in my role as an Advanced Physiotherapy Practitioner in Rheumatology (click here). It was with my Digital Health ‘hat’ firmly positioned that I reviewed the NHS Long Term Plan from a viewpoint of Optimism. Optimism that the NHS is capable of change…. or rather it MUST change! Whilst ‘Going Digital’ will not always be the solution, it may be an enabler to deliver the care we aspire to.  With digital technology part of all our lives on a daily basis, I need therefore take no time in convincing you ‘if’ digital can enable positive change in healthcare but rather ‘how’ it might. From my review of the NHS Long Term Plan (well nearly all of it) I have identified Three Key Areas where the spotlight can be shone onto rheumatology services and where the intentions of the NHS Long Term Plan are highly relevant and applicable. I also provide some insights from the digital health projects I am involved in which reflect my optimism.

Key Area 1:

Improving access to an expert musculoskeletal opinion with the aim of reducing delay to diagnosis for those with AS

Within the NHS Long Term Plan there are specific commitments to rolling out first contact practitioners (FCP) with acknowledgment of the work already undertaken with 98% of Sustainability and Transformation Plans (STP) having confirmed pilot sites for FCP and 55% of pilots underway. The aim of FCPs embedding into the primary care networks is to ensure people are seen by the right professional first time without needing to see a GP first (1).

With 60-80% of adults reporting lower back pain (LBP) at some point in their lifetime, approximately 6-9% of UK adults consult their GP about chronic LBP each year.  This accounts for 14% of all GP consultations (2). Chronic back pain is usually the first and predominant symptom of axial spondyloathritis (AxSpA) with a minimum prevalence of inflammatory back pain (IBP) in primary care of 1.3% (3). Whilst national figures suggest that the search for the ‘needle in the haystack’ that is IBP remains a major challenge, a  redesign of access to MSK opinion for chronic back pain,  which is acceptable to NHS patients, has the potential to address the earlier recognition of inflammatory back pain.

Despite being available in the NHS since 1978, uptake of physiotherapy self-referral across England has been low. With more than 14 million people in England now using GP online services (4), online self-referral to physiotherapy has the opportunity to increase GP capacity by making physiotherapists the first point of contact for patients suffering back pain and other musculoskeletal problems.

My Project Insights:

Since September 2018, I have been funded one day a week to lead a project to explore alternatives to the current GP-led access model to physiotherapy for low back pain.  The aim being to provide safe and acceptable access to physiotherapy with the objectives to reduce use of GP appointments and improve patient experience through online physiotherapy self-referral.  Early engagement with a single GP practice pilot site involved observational visits and semi-structured interviews with patients.   A reiterative process of user-testing of a novel digital self-referral tool for use on mobile devices was developed with patients. The ASAS criteria for inflammatory back pain (5) were included within the question logic and are offered to the patient if they report back pain lasting greater than 3 months. The question logic also includes asking about a personal or family history of psoriasis, inflammatory bowel disease, uveitis or a family history of AS. The pre-test probability tool, the SPADE tool, developed by Dr Sengupta at the Royal National Hospital for Rheumatic Diseases, which has been designed to assist medical professionals define the probability of axial spondyloarthritis in a patient with chronic back pain, below the age of 45 with no definitive changes on X-ray, suggests that a patient presenting with IBP and a personal or family history of an extra-articular manifestation indicates additional tests are necessary and referral on to a rheumatologist is recommended  www.spadetool.co.uk.

A physiotherapy webpage advertising the self-referral service and the link for the online self-referral tool were implemented onto the GP Practice pilot site website and posters with a QR code for the self-referral tool were also displayed in the GP practice reception areas.  The design and implementation of a digital physiotherapy self-referral service reflects the NHS Long Term Plan’s priorities to create straightforward digital access to NHS services.  It has the opportunity to impact positively on the NHS agenda to activate patients to manage their own health and provide timely access to physiotherapy to reduce suffering from low back pain, whilst also having the potential to reduce delay to diagnosis for AS through earlier patient-led presentation.

Key Area 2:

Digitally-enabled primary and outpatient care will go mainstream across the UK –with the potential for service redesign

Let me tell you more about my Digital Health journey. It may help you understand a little about the passion I have for this work. The Rheumatology department in which I work runs a variety of specialist and subspecialist services with around 18,000 face-to-face patient contacts per year. Of these, patients with inflammatory arthritis make up the largest subgroup of patients under long-term follow-up under the specialist team consisting of doctors, nurses and physiotherapists. The principles of treating these conditions are similar: after diagnosis patients are managed using ‘treat-to--target’ approaches whereby treatment is adjusted until patients are in a state of remission or low disease activity. Thereafter patients are seen less frequently but have access to services should their disease flare. A series of headlines in the wider media ‘NHS Outpatients services ‘stuck in the 18th Century’ (BBC News, November 2018) have highlighted an urgent need for out-patient services to be reformed with the traditional model of outpatients being outdated and unsustainable. The NHS Long Term Plan pledges to enable patients ‘to avoid up to a third of face-to-face outpatient visits, removing the need for up to 30 million outpatients visits a year’ (4).

My Project insights:

For nearly three years I have been involved in a digital transformation project within my own rheumatology service. The project has been focussed on developing a digital remote monitoring service for patients with inflammatory arthritis through engagement with two-way SMS messaging framed around the sharing of patient-reported outcome measures (PROMs).

The proposition of the project being:

1) Patients are offered a more accessible and flexible means of communicating with the hospital during a flare or at anytime

2) PROM forms are framed as an integral part of a patient’s treatment plan from diagnosis

3) If patients are offered SMS as a first line communication channel to request support and/or appointments the likelihood of PROM data being collected will be higher and two-way communications will be delivered more responsively

As the project owner, during this time I have been responsible for managing a large and varied team of designers, technical folk, the Clinical Director as well as calling upon my colleagues –Professors, Consultants, Advanced Nurse Practitioners, Administrators and the most important team members of all – Patients. Patients have been involved from the beginning as we have embraced a ‘User-centred’ design model throughout the process of redesigning our out-patient service.  The project team has grown as the ideas generated have required testing and validation with patients and staff but the core team has been myself and 2-3 designers.  Everyone’s ideas are welcomed and the team structure has always aimed to be ‘flat’ without the hierarchy I have all too often experienced in the NHS. The ‘marriage’ of Design and Healthcare has been a typical one – highs and lows with break-ups and make-ups – but one thing has been consistent – the team have continued to ask the question ‘What do patients want from their rheumatology care?’ It is essential to revisit the project proposition and user-centred design principles to ensure the objectives of the project are not compromised. The project is ongoing and aims to offer a flexible ‘appointment exchange’ for those with inflammatory arthritis between those who are well-controlled with those who are in disease flare.

Key Area 3:

Supporting Long-Term Condition Management

The NHS Long Term Plan pledges ‘People will be empowered and their experience of health and care will be transformed, by the ability to access, manage and contribute to digital tools, information and services.  Digital transformation will enable us to make big strides towards forging a lifelong relationship between people and the NHS’.  Patient-reported outcome measures (PROMs) are utilised in rheumatology care to capture disease-specific parameters from a person-centred perspective. Typically PROMs are recorded at an appointment in paper format at fixed intervals and represent a ‘snapshot’ of the patients’ disease status. Patient feedback suggests there is low satisfaction in completing PROMs with a limited understanding of their role in clinical decision-making, particularly if flares are missed.

My project insights:

In my own physiotherapy-led AS clinic, patients are sent an electronic PROM (ePROM) version of the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and spinal pain score five days prior to a scheduled appointment. The use of ePROMs in an AS service prior to clinic attendance was acceptable for patients as demonstrated by the high completion rate. Capture of ePROMs outside the face-to-face setting has the potential to facilitate the delivery of more flexible and responsive outpatient services. My submission to this year’s British Society for Rheumatology (BSR) conference ‘The usability of electronic patient-reported outcomes prior to Rheumatology clinic attendance: Could this be the future in managing demand on rheumatology services?’ has been accepted for an oral presentation on Thursday 2nd May 2019.

In summary: ‘how might the NHS Long Term Plan be an enabler to improve care for those with Axial Spondyloarthritis (AS)?’  

The digital health project examples I have shared including digital self-referral, remote monitoring and electronic PROMs give insight into my optimism that AS patient care can be supported by the agenda of the NHS Long Term Plan. So both as staff and consumers of the NHS going forward, we may be ‘One Click Away’ from delivering and receiving timely, efficient and better care in the digital era.

Comments
Please do email us at comms@astretch.co.uk or tweet us @AStretch_Physio with any comments on this blog; any queries, any issues raised. We'll share these below the blog post

References

1.        www.csp.org.uk/news/2019-01-08-nhs-plan-england-details-physiotherapy-profession

2.        Hill et al: Lancet 2011; 378: 1560–71

3.        Hamilton et al: Rheumatology:2014;53; 363-364

4.        www.longtermplan.nhs.uk

5.        Sieper J, van der Heijde D, Landewé R, et al Annals of the Rheumatic Diseases2009;68:784-788.


Mel

NHS R&D North-West: Wonder Woman

Personally a New Year brings a time for reflection and 2018 proved to be something of a surprise when I was asked to be part of a Wonder Woman series of films for NHS R and D North West.  To be perfectly honest I did feel uncomfortable with the term as being of a certain age I remember the concept of the Wonder Woman outfit and never saw myself spinning around and becoming a super hero!

I was asked a series of questions about my research journey which reinforced how privileged I have been throughout my career to share the lives of people who are living with Axial SpA (AS in the olden days).   It was only because I became curious as to what the outcome measures that I was using were telling me which gave me the opportunity to open my door to the world of research.  My career has been amazing providing opportunities to learn how to ‘do’ research and to add my grains of sand to the beach of knowledge.  It gives me so much pleasure to see how psychological status is now on the radar- my darling daughter aged 9 hearing my delight in saying that ‘it correlations’ and bringing me back to earth with – ‘well it’s just common sense Mum’.

I could not have become the person who I am today without the guidance, support, mentorship and wisdom of some very special people.  Too numerous to name but thank you to you all!  My greatest wish is now to inspire others to become our clinical academics of the future.

I hope that the film inspires you!   Click here


Jane

Websites, apps and videos

You may not have noticed but over the last 9 months the AStretch committee have been trying to be more committed to putting new and relevant content onto our website on a regular basis. We made a decision last November for each committee member to be responsible for producing an article on a monthly basis and our web master Will, set up a rota – this seemed like a brilliant and fair idea, especially as my name came quite far down the list and September 2018 seemed like a long way off. Then the other committee members started to produce their excellent articles, and I started to get worried – what would I write about? Then at a meeting I met a young man who was attending the meeting as a “patient representative” and I was very impressed by how articulate he was and he mentioned that he had a You Tube presence and he usually “vlogged” about his climbing exploits, but he had also vlogged about being a young person with AS and he was delighted about how well received and popular it was.

This got me thinking, as any of the AStretch Committee will tell you, I am a dinosaur when it comes to social media, I am not on Facebook, I am not on twitter, nor do I follow anyone on twitter I am not on instagram but I occasionally may go onto You Tube, but one of the reasons I avoid social media is because I know I am very easily distracted (how many times have I thought about writing this article and found something else to do?!), and as the national press reported at the beginning of August that on average we check our smart phones every 12 minutes - I haven’t got time. But unless I had had the good fortune to meet Max Poplawski I would never have found his vlog. So I thought there are probably other physios out there who may not be checking their phones every 12 minutes and so may not realise there are in fact quite a number of apps and great websites etc that are specifically developed for AS / AxSpA patients that we could be recommending to our patients, to help them self-manage their condition long term.

So I thought I would make a start on an AStretch resource that perhaps you can add to if you  know about or indeed you yourself have developed an app for AS patients. I have been told there are a lot of great apps out there that can be used generally for helping to keep patients motivated with their exercise, but I think for now this resource should be limited to websites / apps / You Tube videos etc that are specifically designed with AS / AxSpA patients in mind. So here to get the ball rolling are a few suggestions that I find useful... (scroll down to "Useful Links Regarding...")


Claire H

Supporting the supporters

Working within the field of AxSpA over the past 20 years has given me the opportunity to look at many different amazing projects to try and enhance the care and services that patients have locally in my area. From service redesign to patient education sessions, hydrotherapy exercises groups to community engagement programmes. All of these interactions are continually aimed at supporting patients to self-manage their condition long term. The fact that patients spend only 3 hours a year with health care professionals and then have to “self-mange” for the remaining 8757 hours of the year is a great reminder of how our input can be invaluable to help support patients to live a happy life with their condition. But what about the other people in the patients’ life ? The ones who spend the majority of the 8757 hours with them. The people who may, or may not (!), help support our patients – their family and friends. What input and role do they play?
Within our roles we have the scope and “permission” to spend time working with our patients, trying to educate and support them in self-management but do we spend enough time educating their family and friends to help them support our patients during all those hours when they are not with us? Are we allowed to spend time specifically educating & supporting the patients’ friends and family? Do “we “ [healthcare managers] acknowledge that time educating and seeing the family and friends maybe an essential part of the patients’ overall care and support strategy? What we are really asking then is……”Do we invest enough time supporting the supporters?” So to give food for thought I want to share a few experiences of how my work includes different ways of supporting the supporters…….

Starting at the basics, when I reflect back and look at when I first started work within this field most of the patients attended their treatment and clinic reviews on their own. I will happily admit that back in those times I loosely asked what support a patient had at home from their family and friends but it certainly was not always the focus of our discussions. Fast forward to the last 5 years and there is a whole new world! My personal recognition that friends and family are key in supporting patients to self manage in all elements of their disease is now paramount to my communication and support that I give to patients. To that end in my local area we actively encourage all patients to bring a family member to every consultation that they have with us. Through our appointment letters, patient clinic information and in person, the offer is always there.  Within the clinic some family members just sit, listen and learn about the condition and its management. This can be invaluable for them to then offer moral support and encourage self management to the patient through their greater understanding of the condition. As an example the wife of a patient in clinic become very emotional when we discussed the fatigue element of the condition and she commented: “I never realised this could be part of his disease…I thought he had just stopped wanting to go out as he was so grumpy, tired all the time and using work as an excuse…”.

Some family members become very involved in the clinic discussions and offer invaluable opinion on how they see the patient is really doing at home and in life. Perhaps giving us a true insight when the patient simply tells us they are “doing ok”. Along side this the discussions can often mean the patients’ themselves have “light bulb” moments when something is raised that they had not recognised or acknowledged as affecting them and their condition. In a recent clinic for example one of my patients attended an urgent appointment on his own describing what seemed to be an acute flare of symptoms even though he had been stable on a biologic treatment for the previous year. He could not identify any changes that may have caused the acute flare and raised concerns that his biologic was no longer working. Inflammatory markers were normal and full dose of drug had been taken. There were no other medical concerns to potentially warrant the change. On a 3 week follow up review he attended again and having seen his pain increase and coping ability decrease his wife came with him as she was concerned. Bloods were still normal (not unusual for some AxSpA patients), so we looked at alternative possible causes for the increased pain and fatigue. Although he had not felt it significant at the time, his wife did mention the recent death of his father………….a sudden event that she stated “had knocked him [our patient] for six” at the time. That he had not been sleeping well since the death as she was aware that he was constantly restless at night. That he had increased his working hours to “stay busy” and not focus on the death of his father. Through conversation after on how stress, work, and lack of sleep can affect his condition there seemed to be a real lightbulb moment for our patient on how this event could have been the cause of his apparent increase symptoms. This insight from his wife certainly positively influenced the patients treatment choices moving forward…his discussion moved from wanting to switch biologic to looking at counselling for his bereavement, sleep hygiene strategies and pacing of his work hours!

Some family members then go one step further and ask what else they can actively do to help support their loved ones. From agreeing in discussion what exercise classes or activity they may do together moving forward every week, to agreeing a strategy at home on how the patient can advise they are having a bad day without making a fuss and the family chores or activities for the day being modified accordingly. This latter point worked well for a family where the mum [our patient] would simply blue tack a picture of a happy face or a slightly sad face to the fridge door to indicate that it was a good or not so good day. Her husband would then offer to cook dinner for example or come up with alternative activity ideas for the kids for the day, being mindful that his wife may not be able to do as much as normal but would still want to be involved.
As a final note, any family involvement within an appointment has to be at the explicit consent of the patient of course. If they are happy though and the family are happy, any level of involvement from a family member in a clinical appointment I feel can be invaluable in the patients overall self management.

Along with my work at a local level with family and friends I have had the great honour of working with NASS on delivering the friends and family sessions at several of their members days. The last was a recent as June this year. All of the days prove to be diverse, humbling and emotional sessions. The format of the sessions each year changes: mini presentations on elements of the disease, open floor questions and answers and this year the AS game of life. This last session saw family and friends move round a game board answering and discussing elements throughout life that may or may not affect their game board character (who just happened to have AS!). Discussing the use of turmeric, what you would do if you won £5,000 on a prize draw or what you would do if you were approached to be part of a new drug clinical trial – all sorts of medical, social, positive and negative elements of life were discussed as the game progressed and allowed us as facilitators to have open discussions with those there. Inevitably, as was the intention of the game, the statements on the game cards led to other topics as the family and friends opened up more, asking questions that were important to them. We even discussed if different high tension TV shows could influence how a patient with AS may feel through somebody feeling emotional or tense when watching TV! 

Being a member of NASS can prove invaluable to our patients but also to the family and friends as they have access to these member days and the specific sessions that are hosted for them. Acknowledging that not all will be able to attend the days though, at my unit we try to recreate the family and friends session each year for our local district. A small donation of money for refreshments from our charitable funds, invitations to all via our NASS group and clinic patients are organised. Scheduled as an early evening session of 2 hours we normally coincide it with our NASS group evening as a sneaky bit of branch promotion for these who may not be members! Supported by the wonderful team I work with we try to get the lead NASS physio, a nurse and consultant along to our session but any combination of staff can make a successful event.

I guarantee that some of the NASS group and their family and friends will insist that after living with the condition for years they do not need to attend any sessions as what could they possibly learn?. I would beg to differ though especially considering the rapidly changing world of medicines management and our increased knowledge about associated conditions and their management. I recall clearly during one of our events the shocked wife of one of our NASS members who had been with the group for 19 years. We were discussing the recommendation for patients to exercise daily for their AS  – “you mean he should be doing more than just coming to NASS once a week? He could / should have been exercising daily?….he could be using our gym at home for example??”.  I think after the session the member had no choice but to increase his exercise regime with the support of his wife!!!

On a much larger scale locally we also host full multi condition, off site education days for patients and their family and friends. Although planning and financial support is key for such an event the benefit is unquestionable. For most of the days (inflammatory arthritis, connective tissue, osteoporosis day) we see anywhere between 300 -400 people attending. We take advantage of the inflammatory arthritis day to offer specific breakout sessions for AxSpA. In these sessions we encourage patients and family together. We find these sessions are really effective for those who do not work or are retired but also those who feel they benefit from taking annual leave to have a day of education about their condition, medicines management, diet, podiatry and everything else in between. We often have one to one slots with the team as well during the day that people sign up for  – with one patient this was undertaken in the relaxed atmosphere of a refreshment area with comfortable sofa chairs, coffee and cake – quite different to the sterile clinic room setup and proved just the alternative atmosphere that both our patient and his wife needed to really communicate with us. Indeed this one session with us saw a complete shift  in discussion for the patient and his wife – for the first time he openly talked to her about his stress at work, his want to reduce some of his hours but the self inflicted pressure that he felt to continue as the bread winner for the family. His sadness that he could not play with his young girls easily due to his pain and fatigue and for the first time his confession to his wife that he felt “down” in mood most days but had been trying to shield her and his girls from his true emotions. Pleasingly as a result of our gathering at the event this couple now come to clinic appointments together, both realising the value and commenting that the appointments provide great support to both of them. Work modifications, open communication and an overall happy life together has been the most satisfying result for them.

So, the value of supporting the supporters I think is unquestionable for all of our AxSpA patients. We all become invested in the care and overall well being of our patents and a significant part of that can be our interaction and support with their family and friends. My 3 top tips to get you thinking:

1)      Start with the basics – encourage your patients to bring a family member to their appointments – this may even be as simple as a leaflet drop to all of your patients, encouraging their attendance. 

2)      Consider hosting a family and friends event – no patients, no secrets, no question is too silly! You may plan some specific education points that you want to get across to them such as the aetiology of the condition or the developments in mediation. You may just want to open the floor to their questions. 

3)      Get in contact – NASS and AStretch have a wealth of experience in supporting the family and friends of AxSpA patients – we are all happy to share our experiences or give you any support we can to set up programmes or events in your area


Claire J

Sleep and AS: do we consider the implications of the quality of sleep on our patients?

For several years now as part of my routine assessment of all our AS and Axial SpA patients, I have been asking how well people felt that they had slept over the past week.  I use a simple verbal VAS scale from zero to 10 with 10 being ‘I have slept wonderfully’ and zero being ‘I haven’t slept at all’.  There is no science behind the question but it is meant to open a conversation and it does. 

I hear a varied range of explanations as to why sleep has been interrupted and poor  which have included a full spectrum ranging from menopausal flushes, stress at work, trips too frequently to the toilet, babies and children in general of all ages and early waking pets etc. etc. 

However what I listen for is the waking in the middle of the night with pain and stiffness as this gives us an opening to ask what (if any) coping strategies people employ.  From listening to our patients over the years I now advise not fighting the pain and or stiffness and stubbornly lying there but to get up and stretch. 

I say ‘go down stairs (if you have them), put the kettle on (you don’t need to make a drink and if you do steer away from caffeine) and stretch whilst it boils.  If you are sore, heat your wheat pack in the microwave and stretch as it warms then take it back to bed with you.’ 

Alas we have no science to ensure that people sleep better.  The best I have is to advise on ‘sleep hygiene’ which is a term that I confess I squirm when saying. Poor sleep is blamed for increasing fatigue and generally lowering our mood and resilience in coping with life in general.  A very recently published study on sleep in AS authored by Alison Wadeley (Clinical Rheumatology (2018) 37:1045-1052) is the first of it’s kind in the UK and is well worth a read.

 It is a large cross sectional, observational, single centre study using the data of 659 patients with both AS and Axial SpA .  Key messages are that not unsurprisingly poor sleepers have higher disease activity and fatigue scores and more night-time back pain than good sleepers.  Poor sleepers also had poorer quality of life, general health, mood and work-related measures.  Poor sleep was also associated with poor mood, female gender, greater fatigue, greater disease activity (specifically, spinal pain and stiffness) and better mobility although the direction of causality between poor sleep and markers of active disease was undetermined.  A further thought is that we need to standardise the measurement of sleep disturbance.

Having now begun to absorb the messages from this study, as a clinician this all makes perfect sense. Wouldn’t it be wonderful if we could use a short questionnaire that would help us to understand the implications that sleep quality has had on our patient’s lives and then be able to have the intervention to help to improve this.  Frustratingly I fear that several years may need to pass and a lot of hard and dedicated work to reach this stage. 

For the time being, I will continue to ask about sleep and do my best to suggest how this may be improved without ‘proper science’.  My thanks go to Alison and her co-authors for highlighting sleep as an important and integral aspect of a person’s life as they live with their AS.  I would encourage our Rheumatology community to at the very least to have a conversation with their patients about the quality of their patient’s sleep. At the very least this would acknowledge that we are aware of the impact that this could be having on the way that they are currently coping with their condition.


Jane

The Perils of Ignorance

By the time I was 27 years old in 1991, I had had AS for 16 years although I had only been diagnosed for 8 years.  

I had been living in New Zealand for nearly 4 years, working as a physiotherapist in different parts of the country.  At this point, I was living in beautiful Takaka in the north of the South Island.  I had been pursuing a very active lifestyle and I had learnt to live with recurrent pain determined not to let this hold me back.   Pursuits included mountain Climbing, Canoeing, and Windsurfing. I had also made friends with a local dolphin and we would play regularly together off the beach at Onekaka.  Life was going swimmingly and I had no intention of that changing.  Two more months to go and I would gain NZ citizenship.  My dream was nearly a reality. 

One day, I had the misfortune of being offered milk straight from a cow (via a jug!) and with no idea of the consequences, I drank it.  It was warm and fairly unpalatable.  This little sip was to change the course of my life forever.  

Within 48 hours, I was laid up in bed with swollen knees and ankles.  I felt really ill and I suffered from abdominal pain and diarrhoea.  One of my eyes fogged over with uveitis but I had no idea that this was serious.  Takaka was full of well meaning locals and doctors who had never come across a case like mine.  It meant that I had to endure bad advice, enemas, special diets, the lot. After 3 weeks and no improvement, my twin brother (who also has AS) was despatched to bring me home.  My heart ached as I left the country of my dreams. 

It took me the best part of 2 years to recover and for most of that time, I was living back at home with my parents which was not easy.  Active disease, pain and lack of sleep made me depressed.    I had lost my friends, my independence, my income, and my active lifestyle.  It took me almost a year to walk without crutches and another year before I could work and live independently. 

Why had this happened? 

I had contracted Campylobacter from the unpasteurised milk.  Not only had my life radically changed, but 2 years later, I was diagnosed with post-infective Crohns disease. 

Why am I telling you this?

If I had been warned about the possible consequences of being exposed to unpasteurised milk products this would not have happened and  my life would have taken a very different path. I believe that not enough information is given to AS patients about the risk of developing a reactive arthritis when exposed to common bacterial such as Campylobacter and Salmonella.  Perhaps this should be a subject that is shared more widely with patients not just by the medical staff but by health professionals too. Please spread the word!

In the next instalment, I would like to share the positive side that this experience has had on my life. 


Juliette

BSR Conference 2018, Liverpool 1st-3rd May

Selected highlights from my notebook scribbles, do hope these are of some help(!)
We've had some information on work in SpA from the BSRBR-AS register - the poster / abstract made it as one of the "Jewels in the Crown" at conference, presented earlier this morning. They compared a cohort of AS on biologics vs a cohort not on biologics. Using the WPAI as an outcome measure the data extraction has found those on biologics had greater improvements in presenteeism and overal activity impairment; improvememnts for presenteeism were similar for both groups. 
We've seen the creeping progress of the Escape-Pain programme as it aims to see as many as 50% of those in the UK with knee OA go through one of it's education ans exercise groups. To hit as many targets as possible Prof Mike Hurley has been knocking on a lot of doors and it looks like progress is now more rapid, look out for a programme near you run by exercise instructors in local exercise facilities, or opt to run one in house ideally staffed by well established physiotherapy assistants (he suggests at band 4 level). Really impressive results from the programme, but challenges to getting it adopted across the country. We've seen how this kind of programme fits into a 4-tiered approach to physical activity in rheumatic diseases, from the broad public health messgaes all the way to one-to-one tailored physiotherapy input.
Dr Yeliz Prior reports there are only 125 rheumatology OTs in the UK as part of her access to rheumatology OT services in the UK review. Dr Lindsay Bearne states, from a recent NRAS memebrs survey, that over 20% of those referred to rheum physio wait for over 16 weeks before accessing services. Dr Yeliz Prior states that rheum OT includes assertiveness training to help patients deal with often invisible yet highly troubling symptoms.
Professor Sarah Hewlett presents results from the RAFT trial: cognitive-behavioural approach to fatigue is effective, maintained for 2 years and deliverable for patients with RA


Will

Portfolio Careers in Physiotherapy

When I was asked to contribute a piece to the AStretch website this week I was happy to. Having been a committee member for 3 years I had seen the resources of AStretch grow and grow to provide support to clinicians interested in Spondyloarthritis (AS). I just had to look at my own diary and decide on when I could do this.

Then it dawned on me that my working week is made up of ‘many different bits’ and when put together they make up a whole …..to me more interesting than 1 job……… maybe that was worth writing about!

6 months ago…a respected colleague of mine asked if I would speak to an audience of multiprofessionals at a conference about my ‘Portfolio Career’. My genuine first question was:
‘What is a Portfolio Career?'
A Portfolio career is … instead of working a traditional full-time job, you work multiple part-time jobs (including part-time employment, temporary jobs, freelancing, and self-employment) with different employers that when combined are the equivalent of a full-time position. Portfolio careers are usually built around a collection of skills and interests, though the only consistent theme is one of career self-management. 
If you’re still interested ……….read on here.


Mel

Why Tai Chi in Axial Spondyloarthritis?

I have been teaching Tai Chi to this patient group for more than fifteen years; the thing that strikes me is how much they enjoy it and how it enables them to increase their function very quickly.

Why should this be? certainly not magic!!

If we think about the symptoms that most of these people experience, pain, stiffness, postural changes, fatigue, sometimes reduced chest expansion and general mobility (walking).

It is generally agreed that exercise has a beneficial effect on these symptoms.

“I was afraid to go out, my pain had become intolerable and I was afraid of falling. The Tai Chi classes have given me a reason to get out of bed on a Monday morning, I now go for a walk after class and at six weeks I can now manage two hours after the forty-minute class, thank you”.

This lady had obviously been struggling for some time and had tried many other forms of exercise, swimming and daily strenghtening and stretching, often recommenend in Spondyloarthritis and also afford benefits such as improved mobility, muscle strength and subsequent pain and fatigue management.

However, these exercises do not fully address the issue of balance.

Balance is the ability of the body to remain steady in a chosen position; to move smoothly and safely through small body adjustments. Postural control requires complex interactions within the musculoskeletal system, sensory and cognitive systems. Joint stiffness at spinal, hip, knee and ankle joints reduces the body’s ability to right itself and reduces proprioceptive awareness. Postural changes also affect balance due to the alteration in the centre of gravity. Ankylosing Spondylitis patients have been found to have a poorer balance in comparison to healthy subjects and it is recommended that postural awareness be included in early treatment plans.

So, we get back to this lady and her fear of falling, a fear of falling is one of the biggest predictors of a fall, and the increased propensity to osteoporosis in this patient group will increase the fracture risk. Inactivity reduces one’s ability to compensate and contributes to other problems, including loss of bone and muscle mass, heart disease, and obesity as well as social isolation.

Tai Chi is practiced in a normal balanced standing position, constant movement of the limbs and weight transference improves flexibility and strength in the lower limbs particularly around the knees and ankles has a positive effect on proprioception and balance reactions and on circulatory systems to joints muscles and vital organs. Co-ordinating arm movements challenges balance and improves positional awareness giving better sense of position in space, over time this is translated into daily activities. Slow repetitive movement helps to re-educate neural pathways improving the system interactions and therefore normal movement patterns.

What else? Well; this lady obviously enjoyed her Monday morning classes, certainly social interaction can have a positive psychological effect which cannot be overplayed. Tai Chi is a “mindful” exercise. Participants are encouraged to concentrate on the here and now and only on their breathing and development of their movements. This can have a calming and relaxing effect which in turn aids concentration and memory which improves pain and fatigue. Of course, the inclusion of breathing exercise throughout the programme has the added value of increasing chest expansion and vital capacity.

In short Tai Chi is an integrated form of exercise which can be included in exercise prescription at any stage of the disease.


Sue

Singing

I have always enjoyed singing. At school we made records (we are talking about the 70s), sang in concerts and managed to get on Songs of Praise! Over the years wherever I lived, I joined a choir or operatic society and performed in various shows.

One day a female Barbershop Chorus called Spinnaker Chorus came to my town and they sang acapella style (without sheet music) in four-part harmony. I listened and marvelled at the sound. Their faces expressed the passion of the song, their bodies swayed with the music and they stood tall. What fabulous postures they all had. To top it all, they really looked like they were enjoying themselves! I joined up immediately. That was 10 years ago.

Since joining Spinnaker Chorus ( www.spinnakerchorus.co.uk ) I have never looked back. At last, I was taught how to sing effectively. Using the mouth, larynx, facial muscles, rib cage and good posture, we are taught how to perfect the sound. Then in time to the music, and maintaining our posture, we move with the rhythm. The work out begins. For some of the songs choreographed moves increase the work out still further. We learn how to breathe, holding onto the breath throughout a phrase, then snatching a breath in unison at certain intervals. By the end of the song, the rib cage has moved to its limit and we are breathless from the aerobic nature of the exercise.

There have been articles written about singing and its positive effect on our physical and mental health. The release of endorphins certainly plays its part, the work out another. So too does being part of a group of people with the same passion. If you are thinking about singing in a choir or a chorus, it has to be worth a try. The physical, emotional and psychological benefits can be dazzling.


Juliette

The power of the Voice

Having been diagnosed with a Chronic life changing condition is not an easy thing to accept.

One of my hobbies has always been music, when my lungs became a problem I decided to take up singing seriously. I sat my theory exams with young children. I had better mention that at this time I was 60 years old. For the singing exam I waited patiently with these youngsters who were brimming with confidence. Me? I was shaking in my shoes. However, I passed all my exams with distinction. I did notice as I studied and practiced during those hours, was that my pain became less pronounced, I became so focused.

I still belong to a choir “The Melody Makers” we practice once a week. I’ve found that I have gone to practice feeling unwell and in pain. Once I start singing the pain recedes, it becomes less dominant. It does make me feel tired but when I get home I am able to totally relax.

I find it is not just the music that helps it is also contact with other people. Many of the choir members have got physical problems but there love of music seems to help.

After finding how much my music had helped me to control my pain I joined other groups, art and a swimming club. The time spent with all these groups I actually feel normal. All I have to do is prepare for each activity in advance and realise there is a small price to pay; the next day I rest.

Jan.

Bollywood Dancing and Ankylosing Spondylitis (AS)

Dance is reported as the UK’s fastest growing art form with more than 4.8 million people regularly attending community dance groups each year in England alone. One added advantage in dancing is that while you’re having fun moving to music and meeting new people, you’re getting all the health benefits of a good workout.

As a physiotherapist I strongly feel regular dancing is great for maintaining strong bones, improving posture and muscle strength, increasing balance and co-ordination, beating stress levels and losing weight.

Bollywood dancing: Bollywood dancing stems from the Indian film industry and has increased in popularity throughout the world since the beginning of the 20th century. Bollywood dance is known for being upbeat; it blends the unique traditional Indian dance forms with the modern western hip-hop and jazz dance styles.

Bollywood and AS: My Husband Raj is a music/dance lover and a choreographer, using our whole family effort over the past 5 years we have conducted few local Bollywood programmes. Grimsby NASS group member and Treasurer Jeanne Murray attended our local Bollywood programme and expressed interest in including some dance routines at our NASS group. The members enjoyed the 5 minutes dance work-out and evaluated the session to be different, easy to exercise, enjoyable, fun-filling and did not report any adverse effects. We gradually started including Zumba and line dance forms, we plan to include few more routines in the future.

Big High five to the Grimsby NASS group members! Big Cheers to all the Bollywood dance lovers.


Susi

Laughter and the love of life

A few weeks ago I had a conversation with a colleague about a patient of hers who I had met in the hydrotherapy pool. This patient had presented in the department suffering from long-term musculoskeletal disease and chronic pain. She was morose and lacking in motivation both with exercise and socially, in fact she rarely left the house. Following initial assessment and treatment she was referred for a course of hydrotherapy.

This lady struck up a friendship with a fellow patient attending the same treatment session as they travelled together on the same hospital transport. This pair soon became the life and soul of the sessions, encouraging other patients and creating havoc and amusement in equal measure. On review, her physiotherapist was amazed at the change in this lady, her posture and physicality had improved dramatically along with her sense of well being and her ability to manage her chronic condition. She is continuing to socialise and exercise with her new friend.

What had brought about this dramatic change? The magic warm water and exercise, skilfully taught by her physiotherapist? Or, the power of friendship, interacting, sharing, offloading and laughing with another human being?


Sue

About us

AStretch is a not for profit organisation; our main aim is to provide a co-ordinated approach to the planning and delivery of education and best practice. Also to support physiotherapists working with people who have Axial Spondyloarthritis (AxSpA) and Ankylosing Spondylitis (AS).

Contact

Email us on astretch@astretch.co.uk for general enquiries

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