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PROJECT REPORT, JANUARY 2019
Benjamin Wilkins M.Ost, MSc, FRSA
MSK Champion, Versus Arthritis.
COMMUNITY MUSCULOSKELETAL HEALTH
“Exploring the views and opinions of people living with a
musculoskeletal condition to attend and lead peer-facilitated
community musculoskeletal health and wellbeing services.”
1
Contents
Abstract Summary
Acknowledgements
Oxford Community Aqua Wellbeing
Background
Aims & Objectives
Methodology
Results
Conclusions
Recommendations
References
Appendix 1 – Rates of MSK Conditions in Oxfordshire
Appendix 2 – Focus Group Questions
Appendix 3 – Participant Informed Consent Sheet
Appendix 4 – Aggregated Group Averages
Appendix 5 – Overview of Key Variables Between Groups
Appendix 6 – Thematic Analysis
2
4
5-6
7-10
11
11-12
13-22
23
25
26-27
28
29
30
32
32-39
40-41
2
Summary
This project was funded through Healthwatch Oxfordshire’s project fund 2018.
Background
Musculoskeletal disorders (MSKDs) are a huge health burden on individuals, families,
society and health services. There is an increasing prevalence of MSKDs and a need to
provide services which support individuals to prevent, treat and manage these disorders
through greater options of self-management. Peer-led services, (services delivered by a
person living with a MSKD) may be a viable option to provide additional health services
to others living with an MSKD, thereby increasing health provision capacity, and promoting
wider choice and autonomy in local communities.
Oxford Community Aqua Wellbeing
Oxford Community Aqua Wellbeing (OCAW) is a social enterprise that delivers group
water-based, therapeutic exercise sessions in public pools in Oxford. The group uses
technology; every participant has a waterproof-tablet computer with an individual
exercise programme powered by artificial intelligence. There is increasing demand for
sessions, and peer-led sessions have been highlighted as a potential option to enable this.
Research Aims
To explore and analyse the views and opinions of people living with a musculoskeletal
condition on leading and attending peer-led health and wellbeing services.
Methodology
Focus groups were completed with members of existing patient support groups. All
respondents completed identical question sets. All responses were recorded or written
and later transcribed. All data was analysed to quantify the responses followed by a
thematic analysis to codify responses to identify trends.
Results
A total of 81 respondents were included in the eight focus groups. Almost half (49%) said
they would consider joining a peer-led service and approximately one-quarter (23%)
would consider leading or facilitating a service for others. Whilst views were positive, the
analysis highlighted many concerns and barriers to participating and leading services
including the considerations for training, time commitment requirements and levels of
liability and responsibility.
Conclusion
Creating peer-led services that are powered for and by the community are likely to be as
well attended as a professionally-led service. Furthermore, a sufficient number of
individuals living with a MSKD are interested to lead such services with suitable training,
3
support and service design. Ultimately this will provide more choice for people living with
a MSKD to access health-promoting services, thereby offering individuals greater
autonomy through better self-management of their condition. This in turn will improve
health and quality of life in addition to placing reduced pressure on already stretched
health services.
Recommendations
Representative MSKD condition organisations must enable more people living with a
MSKD to lead services by creating roles with an offering that incorporates the findings in
this report. This will increase the likelihood of people voluntarily leading and delivering
these services for the benefit of themselves and others.
1. For musculoskeletal condition representative charities and organisations to identify
and generate more opportunities for people living with long-term health conditions
to lead services to support peers which take into account:
o Co-designing and co-creating of services with beneficiaries
o Appropriate, recognised and certified training
o Ongoing support structures (telephone call, videocall, face-to-face, digital
reporting, regional workshops and peer mentoring)
o A reasonable time commitment (1 hour per week/ month)
o Role sharing with others to lessen time commitment and sole responsibility
o Minimal organisational responsibility for service logistics (venue, time, booking,
promotion)
o Services delivered in a format that minimises responsibility and liability o Options which are appealing and suitable for all genders to support greater
representative participation
2. Musculoskeletal condition representative charities and organisations to promote
these to potential service users in such a way so as to ensure:
o Appropriate channels for communication to beneficiaries that highlight the
certified training and credentials of the peer-leader(s)
o That peer-led services are not promoted as anything that would be interpreted
as a replacement for professional services
3. Musculoskeletal condition representative charities and organisations to
collaborate with local health networks, social prescribers and community
navigators to promote and share these services once established, in order to
maximise utilisation and impact.
4. Explore the role that emerging technology can play to reduce some level of direct
responsibility and liability of peer-leaders, such as wearable biometric devices,
video call exercise classes/ professional health advice and artificial intelligence.
5. Explore the role musculoskeletal representative charities and organisations can
play by working with local authority services (libraries, community centres) and
leisure providers to identify the venue, time, space and booking arrangement for
peer-led services, thus minimising organisational and logistic responsibility of the
peer-leader.
4
Acknowledgements
I would like to acknowledge the time, support and expert input to make this project
possible from:
• Prof. Stephanie Dakin, University of Oxford
• Dr. Toby Smith, University of Oxford
• Hannah Parr, Director, Oxford Community Aqua Wellbeing
• Healthwatch Oxfordshire
• Versus Arthritis (Arthritis Research UK)
• Arthritis Action
• National Osteoporosis Society
• National Ankylosing Spondylitis Society
• All the participants who offered up their time for the focus groups
5
Oxford Community Aqua Wellbeing
Oxford Community Aqua Wellbeing (OCAW) is a community interest company based
in Oxford. OCAW’s aims are to provide an affordable, accessible and community
driven musculoskeletal health service in local swimming pools. It delivers two sessions
of therapeutic aquatic activity every week at Barton Pool in East Oxford for £5 per
session. OCAW sessions involve group therapeutic aquatic exercise where every
participant completes a digital assessment, which generates a personalised exercise
programme that is presented on a waterproof tablet computer. OCAW sessions are
group sessions with up to 16 participants who each follow their exercise programme
on the tablet computer which is overseen by an aquatic instructor. The tablet
computer provides the instructional exercise videos for each participant’s individual
programme and collects feedback after each exercise is completed. OCAW has
been created and designed with over four years of testing and development,
designed by clinical specialists in aquatic exercise and rehabilitation for
musculoskeletal conditions, in particular hip and knee joint conditions.
A key reason for using tablet computers is to gather feedback from participants after
each exercise on pain, difficulty, enjoyment and breathlessness. This information is
reviewed by the OCAW team and processed using a system built by Good Boost
Wellbeing (www.goodboost.org). The software system will make recommendations
on the aquatic exercises a participant should complete based on their feedback and
their initial assessment before their first OCAW session, thereby providing a tailored
service rather than a generic exercise class.
OCAW participants regularly report improvements in reduction of pain and stiffness
and improvement of overall physical function and wellbeing. Similar outcomes for
MSKDs reflected in the body of published research evidence on the therapeutic
effectiveness of aquatic exercise and rehabilitation.
There is growing demand to deliver OCAW sessions in more swimming pools, with
increasing waiting lists and mounting referrals from health care professionals.
However, before OCAW expands it is important to consider the potential role of peer-
led sessions to understand participants’ views and opinions on the need for a
professional instructor, and if that instructor could be a volunteer or a person living
with a MSKD. If acceptable this would enable the programme to be run as a peer-led
community health service to reduce costs and increase the number of sessions
available at the same time as empowering service users in self-care of their condition.
6
Participant Feedback
Technology powered by:
“It helps me ease the
pain and makes mobility
easier and reduces
stiffness in my joints”
“I’m able to move better,
my muscles are better, my
posture has change
hugely, I used to be
hunched over before”
“I’m riding my bike again
now and finding that a lot
easier. I’m now bending
down and doing my shoe
laces, that was the biggest
problem before”
Yvonne Bridgit Tom
7
Background
Musculoskeletal disorders (MSKDs) is an umbrella term that covers a wide range of
conditions which involve muscles, joints and the nervous system with the primary
symptoms of pain, stiffness and alerted function. Almost 18 million people live with an
MSKD in the UK1. MSKDs range from the more common conditions of osteoarthritis
(arthritis) and back pain, to more advanced inflammatory joint conditions such as
ankylosing spondylitis and neurodegenerative conditions such as muscular dystrophy.
Collectively, MSKDs represent the 3rd largest spend in the NHS budget of £4.7 billion
and an indirect cost to the wider health system of £10.2 billion1. This includes at the
surface 2.27 million hospital bed days, 1 in 5 GP appointments and 220,000 hip and
knee replacement surgeries each year. In addition to pressure on the NHS, MSKDs
represent the second most common reason for short term sick leave and are the
primary complaint for long term sick leave. The total annual cost to the UK economy
of working-age ill health due to MSKDs, including direct and indirect (lost productivity,
sickness absence, informal care) health costs, is estimated to be £103-129 billion1. Back
pain alone costs the UK economy an estimated £1.6 billion direct and £10 billion
indirect costs. MSKD rates are increasing, even when other conditions such as
diabetes and heart conditions are reducing, and there is a significant increase in
MSKDs projected over the next 15 years. Subsequently, there is an overwhelming
economic case for improved treatment and management of MSKDs, particularly for
low-cost, high volume interventions that reduce pressure on an already stretched
health system.
Oxfordshire and its Clinical Commissioning Group region has MSK rates below the
national average1 (Appendix 1), however there is high variability between local
authorities within the county. Cherwell has rates of back pain, hip osteoarthritis and
knee osteoarthritis above the national average, and West Oxfordshire, South
Oxfordshire and the Vale of White Horse have higher rates of back pain than the
national average (Appendix 1). Additionally, Oxfordshire has a high proportion of
residents over the age of 65 relative to other counties, which is expected to grow at
twice the rate of the country’s population as a whole2. Osteoarthritis and hip and knee
replacement surgeries are MSKDs that are highly prevalent and people over 65 are at
greater risk. With Oxfordshire’s ageing population, the demands and pressures on
health services for managing MSKDs is expected to be greater than the national
average. Oxfordshire and the surrounding area is serviced by the Nuffield
Orthopaedic Centre in Oxford providing over 1,000 total knee joint (TKA) replacement
procedures each year, a surgery which often is performed due to advanced
osteoarthritis and primarily affects people over 65.
An ageing population is a challenge facing the whole of the UK and Oxfordshire is no
exception. There is a rapidly ageing population who have increased BMI3, a well-
8
established risk factor to developing knee osteoarthritis4, which is one of the most
common MSKDs for older adults1. Advanced Osteoarthritis is the primary diagnosis for
the requirement of knee joint replacement surgery in 99% of surgeries5. Additionally,
the average age of a patient undergoing a knee replacement in the UK is 69. The
number of people aged 65+ is projected to rise by 41% between 2015-2035 from 11.8
million to over 16 million6. This is expected to place excessive pressure on a health
system which is already struggling to cope with the current demand for joint
replacement surgery. There are lengthening waiting times and joint replacement
being given lesser importance as a non-emergency surgery7. This is potentially placing
patients at greater risk of worsening musculoskeletal dysfunction due to slow or no
intervention.
In 2015, the most comprehensive UK joint replacement projection study suggested
that the demand for TKA would rise to 118,000 annually by 203511. However, these
calculations were based on 2010 primary knee replacement numbers of 81,7515.
Based on current trends TKA is likely to exceed more than 118,000 replacements by
2020. Additionally, the same study calculated the exponential extrapolation of surgery
rates using a log-linear model, providing an estimate of 1.2m TKAs in 20358,
representing a 1003% increase from 2017 figures. Reviewing annual average increases
in primary TKA projections, based on the mean rise in surgeries between 2013 and 2016
remaining static at 4.94% as a compound increase annually, would result in a figure
of 256,000 TKA in 2035, representing an equivalent rise in the number of procedures of
150% between 2016 and 2035 for the UK.
Due to the current volume of joint replacement surgeries and their projected growth,
it is essential that the medical community have transparent and sufficient knowledge
of pre and post-surgical interventions, that provide the most effective and sustained
recovery, and that cost-effective services surrounding joint replacement are
understood and implemented. If solutions are not identified, an already stretched
health service will be placed under crippling pressure, likely resulting in limited access
to care, and overall poorer outcomes for older adults’ ability to regain maximal
mobility and independence. This in turn has the potential to significantly reduce
patients’ quality with an even greater reduction in physical inactivity and loss of
independence, which itself creates an increased risk of multi-mobility that will require
additional NHS and adult social care services9,10.
Standardised practice for post-operative rehabilitation for knee and hip
replacements in the UK is Physiotherapy-led land exercise11. Land-based rehabilitation
exercise has a moderate evidence base, although this is reported in the most recent
systematic review5 as insufficient due to the number of underpowered studies. Land
exercise is a pragmatic intervention where patients can complete exercises in
outpatient departments, community gym classes and at home17. However, a recent
systematic review highlighted that post-operative aquatic exercise for both hip and
9
knee arthroplasty demonstrated improved outcomes for pain reduction and
functional improvement compared to land-exercise, or no exercise intervention at
both short-term and long-term follow ups12. This is further supported by the systematic
review published on active physiotherapy interventions in inpatient post-TKA
rehabilitation, demonstrating a greater benefit for patients following aquatic therapy
rehabilitation13.
A recent systematic review14 identified that the majority of TKA post-operative aquatic
exercise programmes delivered 3-5 sessions of aqua exercise per week over 3-5 weeks
achieving improved outcomes for function and pain. Given the limited access and
cost of hydrotherapy pools in the UK and the number of TKA patients, achieving an
equivalent intervention dose would pose a significant logistical challenge. A 2017
report highlighted that 84% of the UK population live within 2 miles of a swimming pool
site15. A community-based aquatic intervention utilising public swimming pools
therefore presents a practical approach for investigation.
Evidence for Therapeutic Aquatic Exercise in Managing MSKDs
Therapeutic aquatic exercise and aquatic therapy are broad terms that summarise
hands-on Physiotherapy and exercise-based therapies performed in water20. There
are many additional physiological benefits for patient treatment in water, but for
rehabilitation exercise, the principal benefits are buoyancy, which reduces load on
joints and therefore results in less pain experienced while exercising; reduced fear of
injury; reduced fear of falling; and hydrostatic pressure that reduces swelling15,16,17.
However, one review highlighted that the pragmatic barrier to aquatic exercise for
this patient group is poor accessibility due to limited numbers of hydrotherapy pools
and the high cost of the intervention compared to land exercise11,15. A report by
Muscular Dystrophy UK identified only 179 hydro pools, both NHS and Private in the
UK,16 offering a ratio of hydrotherapy pools to primary TKA surgeries of 1:572. In
comparison there are 3,161 public pool sites15 offering a ratio of 1:32.
There is a moderate quality body of evidence supporting the value of aquatic
exercise and aquatic rehabilitation for the treatment and management of MSKDs
(Figure 1). The table below (Table 1) highlights the MSKD condition specific area, the
number of studies captured in published systematic review, and an overview of their
conclusions. The conclusion of all studies is that therapeutic aquatic exercise is as
effective as land-based exercises in managing pain, physical function and quality of
life for MSKDs, with the therapeutic benefit of aquatic being greater than land-
exercise for improving older adult physical function and rehabilitation following hip
and knee replacement.
10
Table 1: Overview of therapeutic aquatic exercise systematic reviews
23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38
Figure 1: presentation of the weight of evidence for MSKDs treatment by therapeutic
aquatic exercise
One of the modern driving principles behind Physiotherapy land rehabilitation
following TKA is patient-centred progression18,20. Creating patient-tailored
programmes of aquatic exercise would require additional capacity and resource
from Physiotherapists. However, the NHS is facing a shortage of Physiotherapists18 and
there is a need for alternative approaches to manage and generate personally
tailored aquatic exercise programmes for pre-operative and post-operative exercise.
11
Aims & Objectives
This aim of this study conducted by OCAW is to understand the views and opinions of
people living with a musculoskeletal condition(s) on:
• The value of physical activity for their condition and wellbeing
• Peer-led community health services
• The prospect of themselves directly delivering or supporting to deliver a peer-
led community health service
• The therapeutic value and/or benefit of peer-led services
• The OCAW therapeutic aquatic activity sessions
• A peer-leading a therapeutic activity sessions such as OCAW
To achieve the study aim, the objectives of this study are to:
• Run a series of focus groups with participants living with a health condition
• Review and analyse the data collected
• Complete report with conclusions drawn from data analysis
• Disseminate results
Methodology
The focus group questions were developed through exploring what questions would
best answer the aim of this project. These questions were reviewed by researchers at
Botnar Research Centre at Oxford University to validate the suitability of the questions.
Once agreed, the focus group methodology was created as a blueprint to be
followed at every focus group session (Appendix 2).
Patient support groups that included mostly musculoskeletal conditions that meet
regularly in the geography between Oxford and London were contacted through
representative websites. Contact was made through national patient support group
websites for their respective patient support charities. This was completed through a
combination of phone and email. A focus group information leaflet was sent to the
group organiser to enable a group decision of consenting to the focus group taking
place. Following agreement, dates were arranged to complete the focus group at a
public venue or at an existing patient support group meeting.
In total, eight patient support groups agreed to take part in the focus groups with
seven of the eight groups being musculoskeletal focused support groups, and one
support group being a breast cancer support group with members who have a MSKD.
The focus group facilitator provided all participants at the group with an additional
focus group information sheet for signed consent to take part in the research and
12
dissemination (see appendix). Each participant then completed a personal/
demographic information sheet to enable late analysis of common characteristics of
each group to determine any possible relationships between group characteristics
and qualitative feedback themes. These two forms were collected and checked for
consent before the focus group facilitator started the session.
The focus group facilitator followed a standardised format of questions for each focus
group to ensure maximum consistency. In total the focus group included eight
questions. To gather the qualitative data a mixture of audio recording and written
post-it notes were used. At the start of the session the facilitator turned on two audio
recorders (to cover a distribution of participants in a venue) and provided participants
with post-it notes. The purpose of the post-it notes was to enable all participants to
provide feedback in the event they were unable to contribute verbal feedback due
to a lack of time or unwillingness to articulate their opinions verbally. Using post-it notes
also enabled a quantitative understanding of the group distribution of opinion for
certain questions that involved an individual willingness to take part, or not, in a peer-
led activity or to lead a peer led activity.
Each question was read out by the facilitator twice and repeated if requested. Each
question was provided with 3-5 minutes for group feedback. The facilitator was
provided with best-practice prompts in the event the group was not forthcoming with
feedback. Before the reading of the next question, the facilitator collected the post-
it note feedback from every participant in a clear folder which included the question
number to enable simple organisation to review the written feedback.
The facilitator completed each question in sequence. Before question 7, the facilitator
showed the group a three-minute video of the type of session Oxford Community
Aqua Wellbeing delivers, which was captured on a news report in Autumn 2017 as
information about the programme. The questions 7 and 8 refer directly to this
programme. The sequence of the questions was designed intentionally as to not
influence the groups opinions of water-based exercise or exercise for the initial focus
group questions to minimise bias or social desirability effect.
Link to video: https://www.youtube.com/watch?v=hbsB0XjiuTI&feature=youtu.be
After completing the eight focus groups the participant forms were entered into the
spreadsheet to review group characteristics. The audio files were transcribed and
post-it notes transcribed. The analysis of these provided the data to enable thematic
analysis of individual groups and overall thematic analysis.
13
Table 2: List of Groups Visited
# Group Name MSKD Condition
1 Bosom Buddies, Oxford Cancer, some participants living with MSKD
2 Arthritis Action Group, London Osteoarthritis and other arthritic conditions
3 Arthritis Research UK Group, London Osteoarthritis and other arthritic conditions
4 Arthritis Group, Oxford Osteoarthritis and other arthritic conditions
5 Ankylosing Spondylitis Group, London Ankylosing Spondylitis
6 Osteoporosis Group, London Osteoporosis, Osteopenia
7 Back Pain Exercise Group, London Back pain
8 Aqua exercise group, Oxford Mixed
Limitations
Reflecting on the data collection process, there were methodological limitations:
• There was no representation from anyone under the 25-34 years old group
• There was limited representation from anyone under 44 years (12%)
• As the individuals who participated in the study were already part of a patient
support group where there are some or partial peer-led services and support
they are likely to have a degree bias towards peer-led services
• No responders who were not involved or a member of a patient support group
were engaged, therefore these results have limited generalisability to
individuals who live with a MSKD and do not currently engage in these services
• The breast cancer patient support group was principally a group to support
people following diagnosis of breast cancer however many of the included
participants presented with a musculoskeletal condition
Results
The eight patient support group sessions produced input from a total of 81
participants. There was the greatest representation from individuals aged 55-74 (57%),
however, as musculoskeletal conditions are most common between these age
ranges this is not an unexpected result and reflects the MSKD demographic.
The focus groups were biased toward a female representation with only 15% of
respondents reporting as male. This is significantly less than the gender representation
in the UK, although some conditions like rheumatoid arthritis more commonly affect
women. Nonetheless, there was an underrepresentation of men in musculoskeletal
patient support groups, yet men are equally affected by most musculoskeletal
conditions. This illustrates the potential need for more representative groups that
reflect the interests for men to better engage with support groups. It was not possible
to identify the demographic details of representative musculoskeletal charities and
organisation patient support groups and as a result it was not possible to determine if
this gender divide is representative.
14
The focus group which had the highest representation of men was the Back Pain
Exercise Group (44%) indicating that having an active component to patient support
groups may be an attribute men prefer. Nonetheless, Ankylosing Spondylitis, an
inflammatory musculoskeletal condition that more commonly affects men had a
greater representation of women (70%) than men (30%) in the group. The
representation of ethnicities in the focus groups was deemed reflective of the mix of
Oxford and London communities included in the focus groups.
The most commonly presenting condition was osteoarthritis (28%) followed equally by
breast cancer (16%) and osteoporosis/ osteopenia (16%). Given the demographic of
the support groups this is an expected result as osteoarthritis and
osteoporosis/osteopenia are two of the most commonly presenting musculoskeletal
conditions. 22% of respondents indicated that the severity of their condition was ‘mild’,
with the majority reporting it as ‘moderate’ (40%) or ‘severe’ (28%). 7% of respondents
indicated their condition was ‘extreme’ in severity, but there was no group that was
over representative of this response. The majority of respondents have been
diagnosed five or fewer years ago (51%), with 17% diagnosed less than a year ago.
24% of respondents had been diagnosed for more than 10 years.
The physical activity levels of the groups, reported in number of minutes per week
spent exercising, was most commonly none (25%), 1-30 minutes (26%) and 31-60
minutes (22%). The World Health Organisation guidelines for physical activity is 150
minutes of moderate intensity activity per week and there is a strong body of
evidence demonstrating that physical activity is beneficial for managing the majority
of musculoskeletal conditions. However, 85% of respondents reported to completing
less than 150 minutes per week. Interestingly, in the question responses, all groups
highlight the benefits of physical activity and exercise for their condition and overall
health, however the participation in these activities is disproportionately low
representing a disparity between knowledge and behaviour.
The reason for low participation in physical activity may be related to pain
experienced during physical activity. For all respondents, a pain measure was only
included where the respondent also stated that they had completed some physical
activity in the last week (a minimum of 1 – 30 minutes). The responses from inactive
respondents were not included as they had not reported completion of any physical
activity from which to report pain on. Pain was measured using a visual analogue
scale (VAS) which is a commonly used measure for reporting pain which ranges from
0 as no pain to 100 highest pain possible12. Overall, half (50%) of respondents reported
a score of 30mm or less in pain during physical activity. It is not possible to distinguish
if this was a reflection of pain experienced throughout the entire activity or a measure
of the worst pain experienced during exercise. Additionally, it is not possible to
understand from the results if there was any relationship between exercise type or
intensity and pain scores reported as this information was not collected during the
focus groups. The most physically active groups included in this report were the
Ankylosing Spondylitis, Low Back pain and OCAW groups. However, all of these groups
were activity specific patient support groups which indicates that individuals who are
15
engaged in support groups that include physical activity programmes are the mostly
likely to be active. Yet these groups averaged a VAS score of 34mm, 36mm and 23mm
respectively, suggesting that for participants in these groups, pain during activity was
not a barrier to being active.
Approximately one-quarter (28%) of respondents identified as having a disability. The
only disproportionate group was Group 3, Arthritis Patient support group. In this group
69% of respondents identified as having a disability. There are no other
disproportionate responses in this group as respondents identified their condition
severity as similar compared to other groups. 89% of respondents used no walking aid
with only one wheelchair user who was part of Group 6, Osteoporosis. 72% of
respondents were able to swim which is similar to the 2016 YouGov survey illustrating
that 73% of UK adults can swim unaided of 73%37.
Collected responses from all groups indicate that of the 81 respondents, 22% would
consider leading a peer-led service. However, the most common requirements to
enable this for respondents was:
• Certified training and appropriate support
• Having sufficient time to volunteer or an option for role-sharing
• Not to be personally liable or ultimately responsible
• To be able to join in and benefit from the service they were delivering
The highest responding groups to agree to lead peer-led services were from Group 7
(56%), Group 4 (43%) and Group 5 (40%). Group 7 and Group 5 are both exercise
focused patient support groups that are already facilitated by a peer and this is
therefore likely to have influenced the group responses to view peer-leading as
positive. Interestingly, Group 8 (OCAW) scored slightly above average for yes
responses (33%) even though OCAW are a physical activity group, however they are
led by a professional instructor which may have influenced the desire to retain this set-
up resulting in reduced willingness for participants to lead an OCAW session.
Nonetheless, the OCAW respondents highlighted that a particular participant would
make a good peer-led instructor, indicating that the group were happy if a suitable
peer took on the role.
Focus Group respondents reported a nine percent increase in the number who would
consider leading an OCAW session (32%) compared to other peer-led services (23%).
This increase may be due to focus groups viewing a video of an OCAW session before
answering these questions which provided a clearer definition of peer-led role at
OCAW compared to the earlier question of ‘would you consider leading a peer-led
physical activity session if you have the right training, support and guidance’
(Question 6) which is open to individual interpretation. Respondents may have
interpreted physical activity as an exercise they view as undesirable or negative (i.e.
running) leading to a reduced willingness to lead a physical activity session.
Nonetheless, just under one-third of respondents (32%) would consider leading an
OCAW session as a trained instructor using the waterproof table computers. The
16
additional reason for the increase may be that through OCAW the ‘instructor’ is able
to take part in the activity along with the participants in the water and the artificial
intelligence that powers the service would mean that the instructor does not make
any decisions on the activities and therefore is not personally liable or responsible
which were two of the key concerns raised by focus groups.
Almost half (49%) of respondents were happy to take part in a peer-led service with
another 19% who would consider it, highlighting that where peer-led services can be
offered they are likely to be accessed by a large number of people who live with a
musculoskeletal condition. Common responses included the recommendation that
peer-led services should not be seen as a replacement for health professional services
but as complementary or an adjunct.
The verbal and written responses and cumulative frequency from all groups are
included in a thematic analysis graph in Appendix 6. Thematic analysis was
completed through codifying key words or phrases for answers of each question. The
most frequent answers to each question and their frequency count are listed below.
Q1- Do you think physical activity is beneficial for (insert patient support group)?
Reduce stiffness (11), Reduce stress (11), Reduce pain (14)
Q2 – What are your opinions of peer-led services (such as advice, emotional support, sign-
posting, counselling?)
Dependent on peer (personality) (8), Patient Knowledge is valuable (13), Positive (16)
Q3 – Would you consider joining a peer-led physical activity programme?
Patient Knowledge is valuable (9), If suitably trained (14), Social support valuable (17)
Q4 – What do you think the outcome for (insert patient support group) could be for taking part
in peer-led physical activity?
Same/Equal benefit to other activity (7), Social interactions (15), More benefit (16)
Q5 – What do you think are the positive, negative or neutral outcomes for YOURSELF by taking
part in peer-led physical activity?
Patient knowledge is valuable (8), Positivity/Feel Good (10), Social support (15)
Q6 – Would you consider leading a peer-led physical activity session if you have the right
training, support and guidance?
No - Too old (9), Needs right training (14), No - Would not want responsibility (17)
Q7 – What is your feedback, views and opinions of the service in Oxford (OCAW)?
non-swimmer (8), Body confidence (11), would join/positive (21)
Q8 – Would you consider leading a peer-led session like the service in Oxford if you had the
right training, support and guidance?
Time (7), Not tech savvy (7), Low confidence (9)
17
PNTD – Prefer not to disclose
Demographic Details of all Groups Collected
Total number of respondents = 81
Age Group Gender Ethnicity
18-24
25-34
35-44
45-45
55-64
65-74
75+
PNTD
Male
Female
PNTD
White British
White Other
White Irish
Black British
Black African
Caribbean
Arabic
Asian
PNTD
18
Health Condition Details of all Groups Collected
Presenting condition Severity rating of condition
Arthritis/OA
Breast Ca.
Ost Por/Pen
Ank Spon
Rhu Arth
Back Pain
Knee Replacement
Sciatica
DMD
PsA
Hi-Mob
Sjorgens
Mild
Moderate
Severe
Extreme
PNTD
0 - 1
2 - 3
4 - 5
6 - 7
8 - 9
10 - 15
15+
Time since diagnosis (years)
19
Pain score today Pain during exercise (VAS) Minutes of exercise per week
Physical Activity Details of all Groups Collected
0
1 – 30
31 - 60
61 – 90
91 – 120
121 – 150
151 – 180
180+
None
0 - 10
11 - 20
21 – 30
31 – 40
41 - 50
51 – 60
61 – 70
71 – 80
81 – 90
91 – 100
None
Slight Pain
Moderate
Severe
Extreme
20
Mobility and perception of disability details of all Groups collected
Identify as having a disability? Able to swim? Use of mobility aid?
Yes
No
PNTD
None
Walking aid
Wheel Chair
Yes
No
21
Lead Peer-Services, Participate in Peer-Services, Lead Oxford Community Aqua Wellbeing
Lead peer-services Lead OCAW sessions Participate in peer-led services
Yes
No
Maybe
Yes
No
Maybe
Yes
No
Maybe
22
1. Bosom Buddies
2. Arthritis Action
3. Arthritis Research UK
4. Arthritis Group
5. Ankylosing Spondylitis
6. Osteoporosis
7. Back Pain Group
8. Aqua Exercise Group
1. Bosom Buddies
2. Arthritis Action
3. Arthritis Research UK
4. Arthritis Group
5. Ankylosing Spondylitis
6. Osteoporosis
7. Back Pain Group
8. Aqua Exercise Group
Between Group Differences in perspective on leading or participating in Peer-led services
Would lead peer-services Would participate in peer-led services
Yes
No
Maybe
Yes
No
Maybe
23
Conclusion
This report illustrated that the majority of respondents included in the focus groups who
are living with a musculoskeletal condition view exercise as positive. Nonetheless, the
majority are not participating in the recommended levels of physical activity that are
regularly prescribed as an intervention for musculoskeletal conditions. Negative
factors reported that may be influencing low physical activity levels include risk of
injury, over-exercising and not completing the ‘right’ exercises or knowledge of ‘right’
exercise.
Peer-led services are viewed as valuable due to patient knowledge, empathy, social
support and shared understanding of how a condition may affect someone.
However, they are not considered a replacement for professional medical services
and should rather be presented as complementary. The level of training, support and
the personality of the individual providing the peer-led services are the key themes for
willingness to partake in peer-led services. The level of training needs to be evidenced
and validated by an authoritative institution to enable credibility and trust.
The key themes for barriers in leading peer-led services are age (‘too old’), which may
be related to confidence, lack of time to volunteer, needing the right level of
training/support and not wanting the responsibility or liability. Nonetheless, the
majority of participants would attend peer-led services that were appropriate (sign-
posting, counselling, exercise), and many believe these services could be more
effective when delivered by a peer rather than a professional instructor or health care
professional.
To conclude, there is a need for more accessible services to treat, manage and
prevent musculoskeletal conditions. This requirement will continue to increase with the
growing prevalence of musculoskeletal conditions and restricted public health
budget. These services can be delivered by people living with a musculoskeletal
condition and there is interest in delivering these services if the correct roles, training
and support are offered. Crucially, many people living with a musculoskeletal health
condition are willing to access and participate in peer-led services.
24
Recommendations
Representative MSKD condition organisations must enable more people living with a
MSKD to lead services by creating roles with an offering that incorporates the findings in
this report. This will increase the likelihood of people voluntarily leading and delivering
these services for the benefit of themselves and others.
1. For musculoskeletal condition representative charities and organisations to identify
and generate more opportunities for people living with long-term health conditions
to lead services to support peers which take into account:
o Co-designing and co-creating of services with beneficiaries
o Appropriate, recognised and certified training
o Ongoing support structures (telephone call, videocall, face-to-face, digital
reporting, regional workshops and peer mentoring)
o A reasonable time commitment (1 hour per week/ month)
o Role sharing with others to lessen time commitment and sole responsibility
o Minimal organisational responsibility for service logistics (venue, time, booking,
promotion)
o Services delivered in a format that minimises responsibility and liability o Options which are appealing and suitable for all genders to support greater
representative participation
2. Musculoskeletal condition representative charities and organisations to promote
these to potential service users in such a way so as to ensure:
o Appropriate channels for communication to beneficiaries that highlight the
certified training and credentials of the peer-leader(s)
o That peer-led services are not promoted as anything that would be interpreted
as a replacement for professional services
3. Musculoskeletal condition representative charities and organisations to
collaborate with local health networks, social prescribers and community
navigators to promote and share these services once established, in order to
maximise utilisation and impact.
4. Explore the role that emerging technology can play to reduce some level of direct
responsibility and liability of peer-leaders, such as wearable biometric devices,
video call exercise classes/ professional health advice and artificial intelligence.
5. Explore the role musculoskeletal representative charities and organisations can
play by working with local authority services (libraries, community centres) and
leisure providers to identify the venue, time, space and booking arrangement for
peer-led services, thus minimising organisational and logistic responsibility of the
peer-leader.
This report is recommended to be shared with patient support groups, representative
charities of patients support groups and clinical commissioning groups.
The research and production of the report was supported through Healthwatch
Oxfordshire’s Project Fund 2018. The fund enables voluntary sector and self-help
groups to gain funding to carry out small pieces of research with support.
www.healthwatchoxfordshire.co.uk [email protected]
25
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Balance Measures in Older Adults. Utah State University
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management of rheumatoid arthritis: a systematic review. Musculoskeletal
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systematic review. European journal of Physical Rehabilitation Medicine.
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systematic review and meta-analysis. International Journal of Cardiology 186:
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31. Valero R et al. (2012) Evidence-based review of hydrotherapy studies on
chronic obstructive pulmonary disease patients. International Journal of
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Rehabilitation 20:927-936.
34. Wilkins (2017) The effectiveness of aquatic therapy following total hip or total
knee arthroplasty: a systemic literature review. Aqualines.
35. Yeunge & Semoiw (2018). Aquatic therapy for people with Lymphoedema: A
systematic review and meta-analysis. Lymphatic Research Biology. 16(1): 9-19
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british-swimmers-dont-think-they-could-ach
27
Appendix 1 – Rates of MSK conditions in Oxfordshire
Source: Arthritis Research UK (Versus Arthritis) Musculoskeletal Calculator
https://www.arthritisresearchuk.org/arthritis-information/data-and-statistics/musculoskeletal-calculator.aspx
28
Appendix 2 – Focus Groups Questions
Question 1
Do you think physical activity is beneficial for (insert patient support group)?
• In what way do you think it is beneficial?
• Can you give examples of any physical activity you attend and how you think
it is beneficial
Question 2
What are your opinions of peer-led services (such as advice, emotional support,
sign-pointing, counselling)?
• Like/Dislike/Neutral
• Why?
Question 3
Would you consider joining a peer-led physical activity programme?
• Yes/No/Maybe?
• What type of exercise/activity
• Why?
Question 4
What do you think the outcomes for (insert patient support group) could be for taking
part in peer-led physical activity?
• Positive / Negative / Neutral
• Why?
Question 5
What do you think are the positive, negative or neutral outcomes for YOURSELF by
taking part in peer-led physical activity?
• Positive / Negative / Neutral
• Why?
Question 6
Would you consider leading a peer-led physical activity session if you have the right
training, support and guidance?
• Yes/No/Maybe?
• Why?
• What would the training, support, guidance need to be/look like?
Question 7
What is your feedback, views and opinions of the Fluid Motion programme?
• Is it something that you would join/attend?
• What would be your questions or concerns before attending?
• What are the reason why you may not attend?
Questions 8
Would you consider leading a peer-led Fluid Motion session if you have the right
training, support and guidance?
• Yes/No/Maybe?
• What would the training, support, guidance need to be/look like?
• If any, what are you concerns, barriers or challenges a peer-led programme?
29
Appendix 3 – Participant Informed Consent Sheet
30
Appendix 4: All Group Aggregated Averages
31
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
14
65-74
Breast Cancer
8.75 years
‘Moderate’
HBP (3), Heart disease
(1), Diabetes (2), Stroke
(1), Arthritis (5), Neuro (1).
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per week:
Average pain during exercise:
Self-perceived pain response today:
Yes (3), No (10), PNTS, (2)
None (12), Aid (2)
Female (100%)
WB (9), WO (2), PNTD (1),
WI (1)
22.1 minutes
26.6 mm
‘Slight Pain’
Comparison of Group 1 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 1: Breast Cancer
32
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
11
65-74
Arthritis (5)
11 years
‘Moderate’
HBP (2), Heart Disease (1),
Stroke (1), Respiratory (2),
Neuro (3)
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Yes (5), No (4), PNTS (2)
None (10), Walking Aid (1)
F (11), M (0), PNTS (0)
WB (7), BA (2), Caribbean
(2)
61.8 minutes
43.75 mm
‘Slight Pain’
Comparison of Group 2 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 2 – Arthritis
33
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
13
45-54
RA (6), OA
(6)
3.4 years
‘Moderate’
Cancer
(discharged)
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (9), N (3), PNTS (0)
None (9), Walking aid (2)
F (10), M (1), PNTS (2)
WB (5), BB (1), Caribbean (1),
WO (1), PNTS (3), Asian 1), WI (1)
41.5 minutes
42.0 mm
‘Slight Pain’
x
Comparison of Group 3 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 3 – Arthritis
34
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
7
55-64
RA (1), OA (6)
4.25 years
‘Moderate’
HBP (3), Heart Disease (1),
Diabetes (1), Cancer
(discharged 1), neruo (1)
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (1), N (6), PNTS (0)
None (6), Walking Aid (1)
F (5), M (2)
WB (4), BB (1), (WO) (1),
Asian (1)
48.6 minutes
27.0 mm
‘Slight Pain’
Comparison of Group 4 responses (outer) to
aggregate average responses from all groups (centre)
Appendix 5: Group 4 – Arthritis
35
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
10
35-44
AS (10)
8.4 years
‘Moderate’
HBP (1), Heart
Disease (1),
Respiratory (2),
Inflam arthritis (5).
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (1), N (9), PNTS (0)
None (1), Walking Aid (1)
F (7), M (3), PNTS (0)
WB (6), Caribbean (1), Arab
(1), WO (2)
185.5 minutes
34.3 mm
‘Slight Pain’
Comparison of Group 5 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 5 – Ankylosing Spondylitis
36
Total participants:
Average Age bracket
Diagnosis/condition
Average number of years since
diagnosis’
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
11
65-74
OP (11)
4.75
‘Moderate’
Arthritis (1), cancer
(discharged) (3),
Respiratory (1), Neuro (1)
Identify as having a disability
Use of walking aid
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (1), N (9), PNTS (1)
None (10, Wheel Chair (1)
F (11)
WB (10), PNTS (1)
14. 5 minutes
31.00 mm
‘Moderate’
Comparison of Group 6 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 6 – Osteoporosis
37
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
9
45-54
Back Pain (8),
Arthritis (3)
3.2 Years
‘Moderate’
HBP (1), Heart Disease
(1), Diabeties (3), Arthritis
(3), Respiratory (1),
Neuro (2)
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (3), N (6)
None (9)
F (5), M (4) PNTS (0)
WB (4), BB (1), WI (1), Asian
(2)
79. 8 minutes
35.5 mm
‘Moderate’
Comparison of Group 7 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 7 – Back pain exercise group
38
Total participants:
Average Age bracket:
Diagnosis/condition:
Average number of years since
diagnosis’:
Average self-perceived severity of
diagnosis/condition:
Other health conditions:
6
65-74
RA (1), OA (4),
TKA (1), OP (1)
3.8 years
‘Severe’
HBP (2), Heart
Disease (1),
Diabetes (2),
Respiratory (1)
Identify as having a disability:
Use of walking aid:
Gender:
Ethnic Group:
Average number of minute exercise per
week:
Average pain during exercise:
Self-perceived pain response today:
Y (0), N (6), PNTS (0)
None (5), Walking Aid (1)
F (4), M (2), PNTS (0)
WB (4), WO (1), WI (1)
70 minutes
23.3 mm
‘Slight Pain’
Comparison of Group 8 responses (outer) to aggregate
average responses from all groups (centre)
Appendix 5: Group 8 – OCAW participants
39
Appendix 6: Thematic Analysis of Qualitative Feedback (both verbal and written)
0
2
4
6
8
10
12
14
16
Bo
ne
De
nsi
ty
Circ
ula
tio
n
Low
mo
tiva
tio
n b
y s
elf
We
igh
t b
ea
rin
g e
xe
rcis
e
Zu
mb
a
Inc
rea
se t
rea
tme
nt…
Sw
im/A
qu
a
Yo
ga
Mo
bili
ty
Inc
rea
se s
tre
ng
th
Wa
lk
So
cia
l
Re
du
ce
stiff
ne
ss
Re
du
ce
str
ess
Re
du
ce
pa
in
Question 1
0
2
4
6
8
10
12
14
16
18
Ne
ve
r H
ea
rd /
Un
kn
ow
n
En
co
ura
gin
g
Be
tte
r e
mo
tio
na
l su
pp
ort
Re
ass
urin
g
Em
pa
thy
Lac
k o
f G
P s
erv
ice
s
De
pe
nd
en
t o
n p
ee
r
Pa
tie
nt
Kn
ow
led
ge
Po
sitiv
e
Question 2
0
2
4
6
8
10
12
14
16
18
Less
Be
ne
fit
Fu
n
Sa
me
/Eq
ua
l
So
cia
l in
tera
ctio
n
Mo
re B
en
efit
Question 4
0
2
4
6
8
10
12
14
16
18
If e
xe
rcis
e a
ctivitie
s
Pa
tie
nt
Kn
ow
led
ge
If s
uita
bly
tra
ine
d
So
cia
l su
pp
ort
Question 3
40
Appendix 6: Thematic Analysis of Qualitative Feedback (both verbal and written)
0
2
4
6
8
10
12
14
16Ti
me
to
ta
ke
pa
rt
No
t re
pla
ce
me
nt
for…
Pa
tie
nt
kn
ow
led
ge
Po
sitiv
ity/F
ee
l Go
od
So
cia
l su
pp
ort
Question 5
0
2
4
6
8
10
12
14
16
18
If J
ob
sh
are
/ro
tatio
n
If I c
an
be
ne
fit/
take
pa
rt
No
t e
xp
ert
re
pla
ce
me
nt
If n
ot
liab
le
No
t c
on
fid
en
t
No
t e
no
ug
h t
ime
Too
old
Ne
ed
s rig
ht
tra
inin
g
Wo
uld
no
t w
an
t re
spo
nsi
bili
ty
Question 6
0
1
2
3
4
5
6
7
8
9
10
If r
igh
t tr
ain
ing
no
n-s
wim
me
r
Lia
bili
ty/R
esp
on
sib
ility
Tim
e
No
t te
ch
sa
vy
Low
co
nfid
en
ce
Question 8
0
5
10
15
20
25
Ag
e/a
bili
ty
De
pe
nd
s o
n lo
ca
tio
n
If w
arm
wa
ter
De
pe
nd
s o
n c
ost
No
t te
ch
sa
vy
no
n-s
wim
me
r
Bo
dy c
on
fid
en
ce
/im
ag
e
Wo
uld
Jo
in/P
osi
tive
Question 7
41
www.healthwatchoxfordshire.co.uk
Benjamin Wilkins
Twitter: @communitymsk