community musculoskeletal health - healthwatch oxfordshire · video call exercise classes/...

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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.”

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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

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32-39

40-41

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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 (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,

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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.

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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

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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.

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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

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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-

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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

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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.

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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.

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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

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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.

https://www.youtube.com/watch?v=hbsB0XjiuTI&feature=youtu.be

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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.

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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

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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

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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)

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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]

http://www.healthwatchoxfordshire.co.uk/

mailto:[email protected]

25

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Therapy versus Land-Based Therapy Alone on Range of Motion, Edema, and

Function after Hip or Knee Replacement: A Systematic Review and Meta-

analysis. Physiotherapy Canada 67(2): 133-141

17. Geytenbeek J. (2002) Evidence for Effective Hydrotherapy. Physiotherapy

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effectiveness of aquatic physiotherapy of patients with rheumatoid arthritis.

Physiotherapy 101(1): e465

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19. Muscular Dystrophy UK. (2015) Hydrotherapy in the UK: The urgent need for

increased access

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exactly does it mean? Protocol for a scoping review with thematic analysis

towards framing the concept and practice of person-centred rehabilitation.

BMJ Open 2016;6:e011959

21. Campbell D. (2017) NHS faces acute and growing staffing shortage, warns

agency. The Guardian

22. Bartels E et al. (2016) Aquatic exercise for the treatment of knee and hip

osteoarthritis. Cochrane Database of Systematic Reviews Issue 3. Art.

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conditions: meta-analysis. Archives of Physical Medicine and Rehabilitation.

95(9): 1776-86.

24. Waller B et al. (2016) The effect of aquatic exercise on physical functioning in

the older adults: a systematic review with meta-analysis. Age Ageing 45(5):

593-601.

25. Bidonde J et al. (2014) Aquatic exercise training for fibromyalgia. Cochrane

Database of Systematic Reviews

26. Foster D. (2015) A Systematic Review of Aquatic Exercise Programs on

Balance Measures in Older Adults. Utah State University

27. Shi Z et al. (2018) Aquatic Exercises in the Treatment of Low Back Pain: A

Systematic Review of the Literature and Meta-Analysis of Eight Studies.

Archives of Physical Medicine and Rehabilitation 97(2).

28. Al-Qubaeissy K et al. (2013) The effectiveness of hydrotherapy in the

management of rheumatoid arthritis: a systematic review. Musculoskeletal

Care 11(1): 3-18

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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:

22-28.

31. Valero R et al. (2012) Evidence-based review of hydrotherapy studies on

chronic obstructive pulmonary disease patients. International Journal of

Aquatic Research and Education. 6(3)

32. Valle M et al. (2017). Effectiveness of aquatic therapy interventions in the

management of children with cerebral palsy: a systematic review.

Developmental Medicine & Child Neurology.

33. Gets M et al. (2005). Effects of aquatic interventions in children with

neuromotor impairments: a systematic review of the literature. Clinical

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

36. Grande A et al. (2014). Water-based exercise for adults with asthma (review).

Cochrane Database of Systematic Reviews

37. YouGov (2016). A Quarter of British people don’t think they could swim to a

primary school standard. Accessed (20/12/2018)

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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

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


• 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


• 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:




diagnosis’:




11

65-74

Arthritis (5)

11 years

‘Moderate’

HBP (2), Heart Disease (1),

Stroke (1), Respiratory (2),

Neuro (3)


Use of walking aid:

Gender:

Ethnic Group:

Average number of minute exercise per

week:



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’



Appendix 5: Group 2 – Arthritis

33

Total participants:




diagnosis’:




13

45-54

RA (6), OA

(6)

3.4 years

‘Moderate’

Cancer

(discharged)


Use of walking aid:

Gender:

Ethnic Group:


week:



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




34

Total participants:




diagnosis’:




7

55-64

RA (1), OA (6)

4.25 years

‘Moderate’

HBP (3), Heart Disease (1),

Diabetes (1), Cancer

(discharged 1), neruo (1)


Use of walking aid:

Gender:

Ethnic Group:


week:



Y (1), N (6), PNTS (0)


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)


35

Total participants:




diagnosis’:




10

35-44

AS (10)

8.4 years

‘Moderate’

HBP (1), Heart

Disease (1),

Respiratory (2),

Inflam arthritis (5).


Use of walking aid:

Gender:

Ethnic Group:


week:



Y (1), N (9), PNTS (0)


F (7), M (3), PNTS (0)

WB (6), Caribbean (1), Arab

(1), WO (2)

185.5 minutes

34.3 mm

‘Slight Pain’



Appendix 5: Group 5 – Ankylosing Spondylitis

36

Total participants:

Average Age bracket

Diagnosis/condition


diagnosis’




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:


week:



Y (1), N (9), PNTS (1)

None (10, Wheel Chair (1)

F (11)

WB (10), PNTS (1)

14. 5 minutes

31.00 mm

‘Moderate’



Appendix 5: Group 6 – Osteoporosis

37

Total participants:




diagnosis’:




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)


Use of walking aid:

Gender:

Ethnic Group:


week:



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’



Appendix 5: Group 7 – Back pain exercise group

38

Total participants:




diagnosis’:




6

65-74

RA (1), OA (4),

TKA (1), OP (1)

3.8 years

‘Severe’

HBP (2), Heart

Disease (1),

Diabetes (2),

Respiratory (1)


Use of walking aid:

Gender:

Ethnic Group:


week:



Y (0), N (6), PNTS (0)


F (4), M (2), PNTS (0)

WB (4), WO (1), WI (1)

70 minutes

23.3 mm

‘Slight Pain’



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

[email protected]

Benjamin Wilkins

[email protected]

Twitter: @communitymsk

http://www.healthwatchoxfordshire.co.uk/



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