Advancing Practice in Rheumatology Physiotherapy

My Journey from "Senior II" to "Consultant"; travelling from band 6 to 8

The idea of extending the roles of Allied Health Professionals (AHPs) is not a new one. It is worth picking out some elements of the 2001 paper of conference proceedings edited by Alison Carr. This report describes a workshop, run with Consultant Rheumatologists, about extending the roles of nurses and AHPs. It was felt that AHPs “are essential, they underpin future developments in Rheumatology”. What’s more “Consultant Rheumatologists feel that they have a responsibility to facilitate the professional development of AHPs in extended roles through the provision of education and training and the development of a career structure”.
 

Given that this document details discussions undertaken now 18 years ago it is somewhat surprising how slow AHPs have been to grasp this opportunity. Admittedly, this delay is assumed from what is seen in the literature rather than what may have been happening in clinics, but never got published. A literature review looking at extended scope practice and the now far more common advanced practice specifically in combination with rheumatology gives a brief response. Lots of the work into advanced roles in MSK have been in orthopaedics or triage services. There is very little written about the advanced AHP role WITHIN rheumatology services. So, to add to this I thought I should share my own individual journey from band 7 to 8 in rheumatology. (I’ve opted not to name names here, but if you are reading this and recognise yourself then please do be assured of how grateful I am for your input in getting me to where I am now!)

2Stage 1 – Taking over Injection Clinic
This part of the journey was fairly strategic. My line manager had identified a need for injection therapy skills across the physiotherapy team and managed to get a few of us onto the course. I was fortunate enough to be able to get clinically supervised training by an excellent Rheumatology Reg at that time. I soon got up to speed on the skills required for the much-varied workload in a rheumatology injection clinic. A few months later, on a new Reg year we ended up short staffed and it was (I think) an easy decision for Rheumatology Clinical Lead / Management to take me on permanently to run the injection clinic. This was in 2008, and at that time it was agreed that a physio doing an injection clinic would be appropriate for band 8 role. I know that Rheumatology Injection clinic is no longer an automatic band 8 role these days; but I would argue it should still be. There is a complexity to the incoming referrals and some higher levels skills needed to triage appropriateness of request on the spot. There is also the added bonus of offering post—injection (or instead-of-injection) specialist physiotherapy / rehabilitation advice there and then. There is a decent amount of a teaching role to the clinic; more often than not there is someone sitting in observing or training under supervision. It is great to be able to offer this training for GPs, for our in-house Regs and for physiotherapists going through the injection course.


 

Stage 2 – Setting up an AS clinic

I’ve always seen AS patients in my physio role, but in 2011/12 we put together a business case to see these patients in the rheumatology clinics; and to have this as a role substitution for review by medics. This was around the time we were really starting to see the impact of biologic medications and trying to meet the requirements (at that time) for 3 monthly follow up of those patients taking these treatments. The clinic that I started to run was the first in our Trust to have only AS patients in it. This allowed me to focus on one clinical area; feedback from the first 6 months trial was excellent. I opted to use the Leeds Satisfaction Questionnaire; a lengthy, but thorough assessment of rheumatology specific patient feedback. I did get some pointers of what could be improved; of the three questions with lowest scores one was with regards to medication advice.

The timing of progressions of the physiotherapy advanced role fitted my clinical needs well. It was around the time of the AS clinic patient feedback results that my line manger started mentioning Non-Medical Prescribing (NMP) as a training option. This timing benefit did work well to hit the patient questionnaire feedback, but did mean that I did the original supplementary NMP course; and then a year or so later did the Independent version (which had just been released). When colleagues now discuss how arduous they are finding their own NMP studies I sympathise, bite my lip and try my best not to mention that I had to do it twice!


 

Stage 3 – Replacing a Registrar / ST role in general Rheum Clinic

At roughly the same time as the AS clinic set up, we had a chance to trial something different. Again, Reg cover was a little on the light side and my line manager was kind enough to suggest the use of physiotherapy to cover what would have been a Reg role in a general rheumatology clinic. This involved working alongside one of our rheumatology consultants with my own list, but close supervision. This being general rheumatology it covered a broad spectrum of patients. And, yes, the odd one or 2 new patients did slip into what was designed to be a follow up only list.


 

Stage 4 – Early experiments in Physios seeing new patients

Around the same time that I was running this follow up clinic, some colleagues from our MSK triage service were trialling a role seeing new patients referred into rheumatology. This was in 2011/12 and perhaps at that stage triage processes were not as tight as they could have been, as this trial ended unsuccessfully. Feedback involved the breadth of potential diagnoses being a problem in this trial as well as the complexity of the cases seen.


 

Stage 5 – Seeing new patients in the Rheumatology MSK Pain Clinic

Developments took a sharp turn following a change in staffing. The consultant I was supporting each Monday morning left the Trust and I was left potentially losing this band 8 role. I had been happy enough seeing whatever came through the door, but the next step was a little away from AS and other inflammatory arthritis. The opportunity came to work in our Rheumatology MSK Pain clinic, set up by a World-renowned expert in the field, the service saw the non-inflammatory patients. This field of work where pain medications had moderate (at best) effect and problems persisted despite best medical efforts was a ripe place for physiotherapy to be involved. Again, I had been seeing these patients in my physio role since 2004; but this chance nearly 10 years later to see them in clinic did allow different approaches. I was able to really use my NMP skills; both to prescribe and to de-prescribe. The group of patients were also good candidates for non-pharmacological treatment; especially physiotherapy and talking therapies. I had a detailed, lived experience of these treatments and my agreed onwards referrals hopefully reflected this.

After a few years of running this clinic; the lead rheumatologist started to mention his impending retirement. He had a five-year plan so there was no major urgency, but it soon seemed a very logical idea to train me up to see new patients into this service. I have kept data on each new patient I’ve seen in this service, with the numbers currently sitting in the mid-400s. Within that time, there have been some changes in outcome measures used, in treatments recommended (and the evidence base behind them) and in onwards pathway management; however, my results are fairly consistent over that time. In other words, I think I had a good level of training and those first few “New patients” got as good a service as the new patients coming into the service today continue to get.


 

Stage 6 – Seeing new patients with inflammatory arthritis

I am very fortunate to have an excellent referral triage team. The advanced practice MSK team review the letters of all incoming rheumatology referrals; they know my service and which patients we like to see and are close to 98% effective at getting the right patient seen by the right clinician at the right time. However, there are of course always some that slip through, or that have a change in presentation from referral letter to consultation. For this reason, and given that fibromyalgia is a diagnosis of exclusion, I have had to get myself trained up and doing full inflammatory arthritis screens. Of the 400 or so new patients seen I have queried an inflammatory diagnosis for 20 or so; by default, I have as such diagnosed an inflammatory arthritis in 14 of these (although strictly speaking I have referred them to colleagues in our Early Inflammatory Arthritis clinic with a high suspicion).

I have always been fantastically supported by radiology and we are fortunate to have a weekly meeting with our MSK radiologists to discuss cases and share learning. Ordering MR scans has become a normal part of the management of the AS patient I see; and taking this on to ordering scans for diagnosis has hence been an easy step.

I now feel I do have the tools to be seeing new patients across our rheumatology service (or certainly in the more commonly seen inflammatory pathologies and of course in our MSK Pain service). Keeping the patient experience central to these developments is massively important and I have been equally challenged and encouraged by our patient user group representatives.

At this stage of more recent changes, I do feel that I have accidently stumbled into a role that could easily support 3 or more staff. In the absence of these staff I have had to make a few choices about which parts of the job role to pursue now, and which to defer. I am very keen that we physiotherapists (and AHPs) as a body working in Rheumatology are able to progress our careers, to improve the patient journey and to be the right person in the right place. For that reason I’ll continue to write about my journey from band 7 to 8 and, more importantly, to encourage others to do the same. Of course the nurses are a bit ahead of us AHPs in this; but there is no reason this needs to be a competition. A co-operative push advancing the roles of nurses and AHPs in rheumatology is certainly a sensible strategy and the blurring of professional boundaries has to be a worthwhile goal.

Going back to where I started this blog; I would re-state the 2001 Alison Carr paper that AHPs “underpin future developments in rheumatology”; but also I hope I have shown that they also underpin current developments!

This is what I have been up to; please, please do get in touch (@PhysioWillGreg or comms@astretch.co.uk) if you have been doing similar; or especially, if you haven’t but would now like to.


Will


 

References:
Adshead R, Tahir H, Donnelly S (2015) A UK best practice model for diagnosis and treatment of axial spondyloarthritis. EMJ Rheumatol. 2[1]:103-110 http://hasantahir.com/docs/A-UK-Best-Practice-Model-for-Diagnosis-and-Treatment-of-Axial-Spondyloarthritis.pdf 
Carr A (2001). Defining the Extended Clinical Role for Allied Health Professionals in Rheumatology. Arthritis Research Campaign Conference Proceedings No: 12. ARC: Chesterfield.
Cornell PJ, Haynes J, Richards SCM, Thompson P (2005) Patient satisfaction with a combined rheumatology practitioner and physiotherapist ankylosing spondylitis clinic. Ann Rheum Dis;64(Suppl III):586 
Fennelly (2018) Advanced practice physiotherapy-led triage in Irish orthopaedic and rheumatology services: national data audit.  BMC Musculoskeletal Disorders (19) https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/s12891-018-2106-7
Holøyen & Stensdotter (2018) Patients with spondyloarthritis are equally satisfied with follow-up by physiotherapist and rheumatologist. Musculoskeletal Care 16(3) 388-397 https://doi.org/10.1002/msc.1241
Keat A, Gaffney K, Marzo-Ortega H, Cornell T, MacKay K, Skerrett J, Van Rossen L, Wordsworth BP (2011) Improving the treatment of ankylosing spondylitis in the UK, Rheumatology, 50(11):1936–1939, https://doi.org/10.1093/rheumatology/ker075
Pierce & Belling (2011) Advanced Practitioner Roles: relevance and sustainability in a ‘liberated’ NHS. International Practice Development Journal. 1(2) https://www.fons.org/Resources/Documents/Journal/Vol1No2/IPDJ_0102_06.pdf
Van Rossen, L & Withrington, R.H. (2012) Improving the standard of care for people with ankylosing spondylitis and a new approach to developing specialist ESP-led AS clinic. Musculoskeletal Care, https://onlinelibrary.wiley.com/doi/abs/10.1002/msc.1015

The Life and Times of The Mineral Water Hospital

This month, The Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath is making it’s final preparations to move from the Mineral Water Hospital to it’s new home at the Royal United Hospital. I have been reflecting on our unique little hospital and exploring its rich history of pioneering care and research, particularly within the field of Ankylosing Spondylitis.

The Bath Hospital as it was first known, was established in 1739 to service the impoverished sick who travelled to Bath to seek healing from the spa waters of the Roman Baths. An act of parliament in the 16th century had allowed free access to the waters, causing the city to become overwhelmed by the “Beggars of Bath”. The Hospital was founded as one of the first free-hospitals and provided structured access to the baths. Often sponsored by a benefactor or their local parish, each visitor needed only £3 to pay for either their journey home or burial, whichever came first!

Given Royal recognition and a name change to The Royal Mineral Water Hospital in 1887, The hospital is still known locally and affectionately as “The Min”.

Over the centuries, those travelling to Bath presented with a variety of conditions and complaints, including leprosy (a broad term covering skin complaints such as Psoriasis), lead poisoning and Rheumatic fever, with records showing up to an 80% recovery rate1. By the 1930’s a serious initiative started to focus care and research into rheumatic diseases and the hospital gained approval as the Royal National Hospital for Rheumatic Diseases, the first and only of it’s kind in the world.  

The Hospital became known for championing holistic care and rehabilitation and founded The Bath school of Hydrotherapy in 1946 with the Bath school of Physiotherapy shortly after. From its origin, the Hospital has also had a strong emphasis on research, from describing the conditions and remedies seen in the 18th century to multicentred trials today and has contributed a great deal to the knowledge of rheumatic diseases.

Evolution of AS care

In the early 20th century, across the UK the main medical treatments for Ankylosing Spondylitis were limited. Radiotherapy to the spine was popular to relieve symptoms and spinal plaster jackets were used to rest the inflamed spine and pelvis2. I still come across patients who have had (and survived) these treatments. Some, in-fact, claim radiotherapy was very beneficial but with awful side-effects. Others report their spine fused quickly when immobilised in a plaster-jacket, giving weight, I like to think, to the idea of movement and exercise delaying fusion. The association of higher incidences of leukaemia and other cancers stopped the use of radiation and Non-Steroidal Anti-Inflammatories Drugs came into use in the 1950’s

Hydrotherapy and physiotherapy had long been used in partnership with medical management at the RNHRD, but this moved up a gear in the 1970’s with the introduction of the residential AS course;

A crisis in nurse staffing in the summer of 1975 forced the hospital to consider closing the wards. This provided a unique opportunity for Physiotherapist R. Harrison and Dr. Allan Dixon to trial the admission of self-caring AS patients for intensive rehabilitation. Patients attended the physiotherapy department daily for exercises, hydrotherapy and education for two weeks. At the time this was revolutionary and paralleled a similar approach being used in the military sphere at roughly the same time. Army recruits with AS who were removed from duties demonstrated a better recovery after undergoing an intensive exercise and hydrotherapy regime, with up to 70% returning to full duties3. Similarly, these first AS course participants showed improved outcomes. Importantly, they also commented on the positive feelings of comradery and wellbeing, a message I still hear overwhelmingly today. Keen to continue with the peer-support they experienced on the course, these initial participants made efforts to establish a patient support group. From this, The National Ankylosing Spondylitis Society (NASS) was born, with Dr. Allan Dixon as the first chair.

Over the following decades, the AS course under the drive of Jane Barefoot (one of the founders of AStretch) became the corner stone of treatment for Spondyloarthritis at the RNHRD. Though it has inevitably evolved, with a now wider MDT input and a larger emphasis on self-management, the principles of daily exercise, hydrotherapy and education remain.


Outdoor exercise class for AS patients (see reference 1)

With participants staying on site for 2 weeks, the course has provided unique opportunities for clinicians and researchers to gain an insight into the challenges of AS. An example being the development of the Bath Indices in the 1990’s. A team of researchers in the hospital set out to develop a set of outcome measures to reflect all aspects of the condition. They consulted the AS course participants in order to develop relevant questions and used the course intervention to assess for sensitivity for the measures. an early example of patient engagement! AStretch’s own Juliette O’Hea was involved in this research in fact. The resulting BASMI, BASDAI and BASFI are still used as the primary outcome measures of AS throughout the world.

Perhaps due to it’s quirky beginnings, a holistic, personalised approach is ingrained within the culture of the Hospital. We are privileged to have the time to get to know our course attendees and build trust and rapport. We get to know their lives and problem-solve with them. Not very scientific, or easy to bottle, but I feel one of the biggest factors in successfully engaging people with lifelong exercise!

Though we will greatly miss our unique and historic building, and I will miss breezing past a two-thousand year old Roman pavement on the way down to X-ray, we will be taking it’s culture with us. The knowledge passed down through generations of clinicians, to which I owe much, will be preserved and ever-increasing layers of expertise added.

It is also heartening that in the climate of hydrotherapy pools closing nationally, the heritage of The Mineral Water hospital has been honoured through the building of a new, larger Hydrotherapy pool and therapies centre to adjoin the new RNHRD building. Now just need to remember to go to the right hospital!

Emily Clarke

Specialist Physiotherapist in Axial Spondyloarthritis

RNHRD, Bath

1. Kersley GD and Cosh JA. 1979. The History of the Royal National Hospital for Rheumatic Diseases Bath. Ralph Allen Press Ltd.

2. Uhrin Z, Kuzis  Sword MM. Exercise and changes in health status in patients with Ankylosing Spondylitis. Arch Intern Med. 2000. 160:2969-2975

3. Wynn Parry CB. Rehabilitation of the inflammatory arthropathies. Proc R Soc Med. 1974. 67:494-496.


Emily

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

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

comms@astretch.co.uk to submit features for peer review and consideration for website inclusion

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