patients’ experiences of the living with pain service. · 2019. 5. 24. · the living with pain...

Patients’ experiences of the Living

with Pain service.

Lucy Singer

Commissioned by Dr Romy Sherlock & Dr Fiona Purdie

Service Evaluation Project Patients’ experiences of the Living with Pain Service

Prepared on the Leeds D.Clin.Psychol. Programme, 2016 2

Background

Chronic Pain

From an evolutionary perspective pain serves an important role in survival; it is seen as a

helpful response to a specific stimulus at a given time (Flor & Turk, 2011). However, this

is in relation to acute pain; chronic pain (CP) on the other hand serves no benefit for a

person and can be perpetuated by difficult early life experiences rather than caused by a

specific stimulus (Davis, Luecken & Zautra, 2005). CP can be defined as pain that

persists longer than normal healing time (Bonica, 1953), which is usually more than 3-6

months (Merskey & Bogduk, 1994). CP has been highlighted as one of the world’s most

prominent causes of disability (Vos, Flaxman, Naghavi et al., 2012). From one-third to

one-half of the adult population experience chronic pain, which equates to approximately

28 million adults in the UK (Fayaz, Croft, Langford, et al., 2016). This is a worrying

statistic considering the huge impact CP has on people’s mental health. Burke, Mathias

and Denson (2015) found that people with CP consistently report significant problems in

all aspects of psychological functioning compared with controls. CP is not only a huge

burden on individuals, but also on people’s social and family life (Duenas, Ojeda,

Salazar, Mico & Failde, 2016) and economically (Anderson & Wallace, 2018). For

example, from an economic perspective, in 2016 over £537 million was spent on

medication for people with CP.

Understanding pain



Several important advances have been made in attempting to understand pain, most

notably the formulation of the gate control theory (Melzack & Wall, 1965), which

identified that pain was multidimensional. Furthermore, Fordyce (1976) introduced a

behavioural way of managing pain which was based on operant conditioning and positive

reinforcement of behaviours that are incompatible with pain and extinction of behaviours

that reinforced pain. Pain is now viewed as a complex response with biological,

emotional, cognitive and behavioural components. CP is a developmental process that

transpires over the course of a number of months or years, with pain coming and going in

a cyclical fashion rather than a single episode that becomes chronic after three months

(Linton, Flink & Vlaeyen, 2018).

Management of Chronic Pain

According to the medical model, pain management should involve removing the source

of pain or blocking the pain pathway (Flor & Turk, 2011). However, many CP conditions

have been found not to respond positively to the most advanced medical, surgical and

pharmacological treatments available (McMahon, & Koltzenburg, 2006). Medical

interventions such as opioids or surgery have not only been found to have poor long-term

benefits, but long-term use has also been associated with increased psychological distress

(Gatchel, McGeary, McGeary & Lippe, 2014). For some conditions, such as fibromyalgia

and headaches, no physical pathology can be identified (Flor & Turk). Therefore, it is

difficult for management strategies to be based solely on the medical model; a more

integrative, multidimensional approach would be best suited to manage CP.



Nowadays, the biopsychosocial model of pain is the most widely used model of

understanding and treating pain disorders (Gatchel et al., 2014). Pain management

services have now taken a biopsychosocial perspective and include interdisciplinary work

by physiotherapy, psychology, medical professionals and occupational therapy. This way

of managing CP has been found to be more effective in the long term than purely medical

methods such as injections or surgery (Weiner & Nordin, 2010). CP services often use

pain management programmes as a way of providing treatment to more people. This is

beneficial from a financial perspective and also on an interpersonal level for patients to

interact with other people with CP.

The British Pain Society (2013) produced guidelines for pain management programmes

for adults which endorsed interdisciplinary working using cognitive behavioural

principles. A key part of these guidelines is that they note that pain relief is not typically

the primary aim of pain management programmes, but rather a focus on improving daily

functioning. Therefore, it seems reasonable that pain management programmes would

adopt principles from Acceptance and Commitment Therapy (ACT) as ACT emphasises

the importance of acceptance and focusing on psychological flexibility. In the context of

CP, psychological flexibility refers to the ability to accept painful sensations, feelings and

thoughts and focus on opportunities of current situations and understanding that

behaviour is focused on realising valued goals rather than pain control (McCracken &

Vowles, 2014). The British Pain Society’s guidelines focused on Cognitive Behavioural

approaches, only noting briefly that new approaches such as ACT could be good

alternatives. The guidelines were due to be reviewed and updated in October 2018 so,

given that recent literature has shown great effectiveness for the use of ACT to guide pain



management programmes (e.g. Johnston, Foster, Shennan, Starkey & Johnson, 2010;

Thorsell, Finnes, Dahl, Lundgren, Gybrant et al., 2011; Wicksell, Kemani, Jensen,

Kosek, Kadetoff et al., 2012), perhaps this will be reflected in the new guidelines.

Pain Services

Pain management services are run at a community, secondary care and tertiary care level.

Ten years ago, an NHS quality improvement report highlighted the need for investment

and improvement in pain management service provision (Scotland N. Q. I., 2007).

However, research has found that service provision for the management of CP in the UK

remains inadequate (The National Pain Audit, 2012; Faculty of Pain Medicine, 2015).

Although there are guidelines for pain services to follow, not all services are managing to

meet these standards (McGhie & Grady, 2016). It is clear that research is continuously

being carried out in order to improve pain services. However, this research is generally

being carried out as audits or looking at outcome measures. Few studies include service

users in their research to establish their perspectives on how pain services could be more

effectively and efficiently run.

Bradford’s Living with Pain Service

The Living with Pain (LwP) service in Bradford was established in 1998. The service is

run by clinical psychologists, physiotherapists and an occupational therapist.

Approximately 1000 people are referred to the service each year and as no evaluation of

the service has formally been carried out to understand the patients’ perspective of how

the service is run. When patients are referred in to the LwP service they are invited to an

introductory group which explains the use of the biopsychosocial model of managing



chronic pain rather than the medical perspective. From there, if patients feel it is the right

service for them they are then invited to a 1:1 assessment with a psychologist and

physiotherapist to determine what would be the best route for the patient. This could be

1:1 psychology, 1:1 physiotherapy, an 8-week ACT-based group run by physiotherapy

and psychology, a group run just by physios or signposted for other services which could

be of help. This service is different from medical consultant led pain clinics which take a

less holistic perspective and focus on medication as a treatment for CP.

Aims

Dr Romy Sherlock and Dr Fiona Purdie, Clinical Psychologists, commissioned this

evaluation project in the hope that the following aims would be addressed:

To gain an insight into patients’ experiences of the Living with Pain Service.

To create a list of any improvements that patients would like the team to develop

within the service.

Method

Design

The LwP service does not have any qualitative data about patients’ experience of the

service. A discussion took place to establish the most appropriate methodology for the

research. Semi-structured interviews were initially considered as a method for gathering

qualitative data as this method is most frequently used in healthcare settings (Gill,

Stewart, Treasure & Chadwick, 2008). However, in order to obtain qualitative



experiences from as many people as possible, it was decided that a focus group was the

best method. This was so that participant interaction could be observed and so that

participants could reflect amongst each other without the researcher having to have as

much involvement and therefore influence over responses (Stewart & Shamdasani, 2015).

Furthermore, focus groups tend to generate a more genuine social interaction rather than

a more artificial scenario of 1:1 interviews (Stewart & Shamdasani, 2015). It was

acknowledged that more detailed experiences would be identified from 1:1 interviews,

however, it was agreed that this research did not require in-depth personal experiences

but would benefit from the discussion around people’s experiences of the service. The

question schedule (Appendix A) asked questions such as ‘what was your experience of

the assessment?’ and was used as a guide throughout the focus group to gain a deeper

understanding of their experiences of the service. Towards the end of the focus group, a

flipchart was used in order to generate a list of recommendations for service

development.

Participants and recruitment

Focus groups tend to have 6-11 participants (Stewart & Shamdasani, 2015) so the aim

was to conduct a focus group with this number of participants. Thus, 125 participants -

who had had an assessment with the Living with Pain team between August 2017 and

February 2018 - were invited to take part in the focus group via a letter. The letter

included practical information and an information leaflet was enclosed to provide more

detail. Ten people replied to the letter by calling the psychology department and

expressing an interest in taking part. Six participants arrived on the day to take part in the

focus group. Demographic information of the participants can be found in Table 1.



Table 1 Demographic details of participants

Participant

1

Participant

2

Participant

3

Participant

4

Participant

5

Participant

6

Gender Male Female Male Male Female Female

Age 68 53 41 38 52 81

Type of

pain

Widespread

joint pain

Lower

back pain

Widespread

pain

Neck and

lower

back pain

Back pain Widespread

pain

Length of

time

experienced

CP

15 years 5 years 4.5 years 5 years Unknown 10 years

Attended

LwP group

No Yes Yes Yes No No

Ethical Approval

Ethical approval was obtained by the University of Leeds Research Ethics Committee on

15th February 2018 (approval email Appendix B). The Bradford Teaching Hospital

Foundation Trust also approved the evaluation (email confirmation can be found in

Appendix C)

Procedure

Participants arrived at a familiar location, were given the information leaflet to read again

and were asked to sign a consent form (Appendix D). We started the focus group by



giving introductions together with a verbal explanation of what the aims of the focus

group were and the plan for the 90 minutes.

Analysis

The focus group was recorded using an encrypted dictaphone provided by Bradford

Teaching Hospitals Trust. Dr Romy Sherlock, the commissioner, scribed as the focus

group was taking place. When the focus group finished, the transcription was completed

by listening to the recording to ensure that there was a full transcript for analysis.

Thematic analysis was then used to establish themes within the data. Thematic analysis

was chosen as verbal interviews and focus groups tend to be at the root of thematic

analysis (Joffe, 2012). Furthermore, an approach such as Interpretative Phenomenological

Analysis (IPA) did not seem appropriate with this research as it is more often used in 1:1

interviews to establish a deep and meaningful interpretation of an individual’s personal

lived experiences (Smith & Osborn, 2015). Braun and Clarke (2006) outline a six-phase

method for carrying out the analysis; familiarising self with the data, generating initial

codes, searching for themes, reviewing themes, defining and naming themes, and

producing the report. In order to check the quality of the analysis, Dr Fiona Purdie also

went through the transcript and looked through the themes produced to ensure she agreed.

We discussed the analysis and changes were made accordingly to ensure that we were

both satisfied with the analysis.

Results

Thematic analysis on the data generated five main themes, as described below.



Figure 1. Diagrammatic representation of themes generated through thematic analysis.

This figure illustrates theme one as the ‘living with pain journey’ and how the pain is

constant and fluctuates at various timepoints. During this journey is the second theme of

‘frustrations around GP’s understanding of CP’ which encapsulated that participants felt

that GPs did not have a good understanding of CP and the best ways of managing it,

including the LwP service. The third theme is that of ‘burden’ and how the pain has had a

negative impact on people’s lives. Once an understanding of the LwP service is gained

and people start to benefits, the pain journey becomes slightly easier, as highlighted in

theme four, ‘moving forward’. Finally, the fifth theme is based on ‘recommendations’

that participants gave for improvements of the service.

Theme 1: Living with pain journey

All six participants described living with pain as a constant in their lives and they saw

this as a journey. They described a long journey before reaching the LwP service, where

they had tried to go down various avenues for managing their CP. They also described

their journey as continuing throughout being part of the LwP service and long after they



will be discharged. Each participant had their own story and it was clear that they each

regarded their story as a journey, with stages, and each of these stages always related

back to the CP. For some participants it was natural to use phrases such as “it was early-

ish into my journey” (participant 3) which highlighted how they had had to live with the

ups and downs of CP for a long time.

One important point that all participants noted was that their pain was still present and

always will be, and that’s why it’s a journey. This appeared to be a point that all

participants wanted to make clear, that even since being part of the LwP service, their

pain was still present. This was evident by participants clearly stating that they were “still

in pain” (participant 1) or that “the pain is still there” (participant 2). However, they

spoke of being at a different stage of their journey since being part of the LwP service

and that now the plan was to learn to live with the pain rather than focusing on taking the

pain away; “it’s just me personally learning to live with the pain” (participant 1).

Theme 2: Frustrations around GP’s understanding of CP

Arguably the most passionately discussed point during the entire focus group was

participants’ experiences with their general practitioner (GP). These experiences seemed

to focus on frustrations around the way they perceived their GP’s to have a poor

understanding of CP and the view that GPs are not up to date with the correct ways of

managing CP.

Participant 2 stated that she had “been going back and forwards to the GP for 5 years”,

indicating the long process involved with seeking help for CP. The context around this

statement was that participant 2 felt that the GPs she had seen over the time were unsure



of what to offer her to help manage her pain. It was felt that there were often mixed

messages and confusion around the best course of treatment for CP. Participant 4 detailed

the agonising cycle of going on and off medication on the advice of his GP: “my GP just

says have some tramadol…get off tramadol…I’m in pain again – have some more

tramadol”. There was a strong sense that GPs are not confident in their knowledge of CP,

which from a patient’s perspective is worrying and induces feelings of helplessness and

hopelessness.

When participants were eventually referred by their GP to the LwP service they described

confusion around not knowing what they had been referred to. This is in part due to the

lack of information given by the GP and also due to the lack of information given on the

introductory letter written by the LwP service. Participant 5 stated “I thought I was at the

pain clinic” and participant 4 said “you don’t know what you’re coming to”. This is very

confusing for people who are attending the LwP service and indicates poor

communication which ties in with the narrative that the participants shared around the

GPs not knowing enough about the LwP service and therefore not being able to share the

information with them prior to the initial appointment with the LwP team.

Therefore, it was felt that “GPs need educating” (participant 3). Participants were

understanding of the limits and boundaries of the GPs profession but felt that with a little

more education around managing CP and the services in the area, it would be more

helpful for the vast number of people with CP. This is highlighted by participant 1 stating

that “a GP is not supposed to know everything, but they should know enough to be able

to signpost you”. Thus, some training and guidance for GPs would be beneficial in the



long run for not only the care and management of CP but also the mental well-being of

those seeking help.

Theme 3: Burden

The third theme is around the burden that pain has had on their lives, with participants

commenting that they felt “isolated”, “anxious” and “low” as a result of the pain. The

participants described great emotional distress associated with living with CP. The most

apparent impact was that pain is isolating and that this has a huge impact on emotional

well-being. This was illustrated by comments such as “you’re very isolated when you’re

in pain, it’s like an invisible devil” (participant 6). This isolation can be so powerful,

reinforced by thoughts that no-one understands CP; illustrated by statements such as

“I’ve gone from dealing with it on my own, not speaking to anyone about it and the

doctors not understanding, feeling like I’m going mad” (participant 3). The isolation can

be due to a number of factors, as participants described how the pain limited them from

participating in social events, furthermore, participants explained how they actively

pushed others away due to their pain. For example, participant 4 described “we [people

with CP] are difficult to live with and you almost live your own life, become isolated and

push people away”.

Theme 4: Moving forward

Once an understanding of the service was gained and people started to see the benefits,

the pain journey as a whole became slightly easier. As noted within the theme around the

burden of pain, CP had a huge negative impact on the participants’ lives, and when they



were introduced to the LwP team, they witnessed a huge improvement in their mood and

functioning. Participant 3 described the journey he undertook by joining the LwP group:

“I felt so isolated and so low, so you think how is sitting and talking about it for 6

weeks ever going to help? You don’t realise. It’s not until you start the course and go

through the process that without that you wouldn’t go through and process things.

You’d feel more alone and more lost without an initial start. You wouldn’t get

anywhere.”

Although taking that first step is difficult, in particular when the there is little information

given about the service you are attending, participant 3 highlights that it is a necessary

step to make in order to help process details around the CP and managing it as part of

life. Beyond this first step, participants noted that they were finally able to do activities

that they hadn’t done in years; some even said that being referred to the service “changed

just about everything”, in a positive way, and others agreed with this (participants 1, 2

and 5). In particular, the psychological tools and strategies provided throughout the group

programme were found to have a huge impact on social and emotional well-being for the

participants as illustrated by participant 2: “it’s those tools that I’ve found I’ve really

needed to understand and accept to move forward with everything”.

Theme 5: Recommendations

The fifth theme was a collation of all the suggestions made by the participants of things

that they would find helpful if they were to go through the LwP service again. The

recommendations that emerged from the focus group seemed to cluster into two

categories, the first being this strong need for spreading the word about the LwP service



and CP management, and the awareness of the importance of using multiple medias to

make the service more accessible. The second category included the practical service

development points that the participants suggested. The recommendations are outlined

below.

Spreading the word using multiple medias to spread the word

Educate GPs about the service and pain management

Putting posters up at GP surgeries

YouTube page with information about what the service will offer, details of the

group, and including still pictures to show what the environment is like etc

Facebook group to demonstrate the need of the service and how important it is

Practical service development

An information pack to take away at the information group

Options for morning and afternoon groups

Could the course be longer? Understandable if not possible due to a lack of

funding

More funding; which could be used for making the LwP service more accessible

to the wider area of Bradford and beyond. Furthermore, more funding could be

used to employ more staff (Psychologists, Physiotherapists, Occupational

Therapists) to help support the large number of people with CP. More funding

could also help provide more resources and could allow for more programmes to

be introduced, including follow up sessions as part of the programme.



Telephone services for those who would like support over the phone, if they

cannot leave the house, or if they have attended a group and would like further

information or support. At the moment staff are not able to provide this as a

service.

Bringing partners to information group

Solutions for missed sessions on the group such as being given the resources and

some time with the facilitators, or not finishing the group and starting the next

group. Neither of these are ideal solutions, but a suggestion that could be thought

about in team meetings and perhaps further explored in a future focus group.

Have a dietician talk about nutritional advice during the course

Make the service accessible to everyone who needs it; this was mainly in relation

to making sure the service is accessible to those in Bradford and surrounding

areas. In order to do this, more funding would need to be put in place.

Information on hydrotherapy pool/swimming

Discussion

The main themes generated from the analysis of the focus group were ‘living with pain

journey’, ‘GPs lack of understanding of chronic pain, ‘emotional impact’, ‘positive

impact of service’ and ‘recommendations’.

Living with pain journey

The findings from the current focus group indicated that CP is a life long journey which

fluctuates depending on life events and psychological well-being. This is consistent with



the literature around this area which has found that CP is exacerbated by various life

events and stress (Abdallah & Geha, 2017; Asmundson & Katz, 2009). The theme around

CP being a journey is a theme which has emerged in previous literature around CP (e.g.

Noel, Beals-Erickson, Law, Alberts & Palermo, 2016). The word ‘journey’ is quite often

used to describe a difficult period of time and can indicate the lengthy road that people

have endured. The word ‘journey’ has neither positive nor negative connotations and

therefore encapsulates all experiences regardless of time, burden, strength and growth.

Therefore, this word accurately depicts each and every person’s experience of CP and has

a way of bringing people with different experiences together. Each person’s pain is

different, and they have each had a different experience of getting to the LwP service,

and yet they have all experienced the burden that CP brings with it, as well as the

resilience of living life with this pain and seeking help to manage it.

Psychological input

Although each person’s experience was so different, each described the psychological

impact of having lived with CP for such a long time. This is consistent with previous

research which has highlighted the negative impact that CP has on an individual’s daily

functioning, emotional well-being, relationships with family and friends and work life

(Duenas et al., 2016). This highlights the need for a truly biopsychosocial approach to

managing CP; which the LwP service in Bradford is currently providing. Participants

described a very beneficial and reliable service provided by the LwP service. The detailed

assessment, the options given at the end of the assessment and the LwP group were all

noted as being well-run and helpful. These were all important for the participants as it

meant that for the first time they felt heard; feeling listened to can empower patients to



have a sense of control over themselves and their situation (Skuladottir & Halldorsdottir,

2008).

In order to consider the psychological well-being of patients, research has found that

more CP groups are being informed by ACT principles which are highlighting that ACT

significantly improves psychological inflexibility and pain-related functioning (Wicksell

et al., 2012). The LwP team have adopted ACT principles not only to inform the group

work but also the rest of the services they provide, such as the information session, and

this seems to be well received by patients. This is important as ACT allows CP patients to

accept the pain as part of their lives and begin to work on flourishing other areas of their

life to promote well-being. This is an example of how the team is led by psychologically-

informed thinking and how this is so well received from patients as it incorporates both

the psychological and social perspectives that have previously been missed out of their

care.

GP Training

Although is difficult to fully know what training GPs are given in relation to what CP is

and the management of it, the undergraduate medical teaching on CP is poor (Briggs,

Battelli, Gordon, Kopf, Ribeiro et al., 2015). Furthermore, it is difficult to make sweeping

statements about professional training and services they provide. However, according to

the participants in the focus group, the GPs’ lack of knowledge of CP and the services

available to help support and manage CP was one of the biggest factors that they thought

needed addressing and, therefore, it would be dismissive not to highlight the issues in this

evaluation. Recent qualitative research carried out in Scotland illustrated that GPs



expressed concerns around treating CP with the thoroughness they desired in the given

timeslots allocated to appointments (Gordon, Rice, Allcock, Bell, Dunbar, Gilbert &

Wallace, 2017). Thus, this is perhaps an area that GPs are aware of as being somewhat

difficult to treat during their appointments. Therefore, it could be of some use to GPs for

the LwP team to develop training for GPs in the Bradford area which acknowledges the

difficulties they face and gives them practical strategies that will help them to better

understand the management of CP in order to implement this in their practice.

As approximately one-third to one-half of the UK population are living with CP then this

would equate to between 116,667-175,000 people in Bradford. However, the LwP service

receives 1000 referrals each year, which is less than 1% of the population of Bradford

who could be experiencing CP. Therefore, with such a low percentage, it is safe to say

that the service is not reaching everyone in Bradford who may need support. Perhaps

some of this can be attributed to the fact that GPs are unaware of the service that the LwP

team provide and therefore do not know to refer. Another possibility is that the LwP team

are stretched for time as it is and have therefore been unable to publicise the service for

professionals to know to refer. Furthermore, with funding cuts to the NHS, it is unlikely

that the service is in the financial position to manage any more referrals than they

currently receive and, therefore, although the need may be greater, the service would not

necessarily be able to provide for such large numbers.

The LwP Service

From a service perspective the results indicate that the team are doing a good job in not

only providing support but also practical psychological and physical strategies to help



better manage patients’ pain. However, the focus group was also helpful in identifying

some areas of the service that could be improved. This addresses the second aim of the

project which was to identify improvements that could be made to develop the service.

There is wide recognition that service user involvement in service development is vital

for strengthening services (Semrau, Lempp, Kevnejad, Evans-Lacko, Mugisha et al.,

2016) and therefore the LwP team placed this as a priority in order to develop the service

in a patient-centred way. The focus group allowed service users to provide an important

insight into their experiences and they provided some very useful recommendations for

how they saw the future of the service, in order to continue helping more people with CP.

Limitations

Although focus groups provide rich data due to participants responding to and building

on the contributions of other participants in the group (Willig, 2013), they are also reliant

on participants feeling comfortable to disclose their true opinions openly within a group.

It is unclear whether all participants felt completely comfortable sharing their views,

however, as everyone participated in the discussion it could be assumed that people felt

safe enough to talk openly and honestly. An alternative design could have been used,

such as semi-structured interviews, however, this would not have provided the

conversation that the focus group allowed which enabled the researcher to gain an

understanding of how attitudes are formed and altered by others (Willig, 2013). Semi-

structured interviews were considered for the research to gain rich data for understanding

people’s experiences. This would also have provided an opportunity for more people to

take part in the research if we offered to do home interviews. However, it was felt that for

the purpose of this evaluation project detailed interviews would not be as valuable as



hearing from a group of people who could bounce their thoughts and viewpoints off each

other.

A further limitation of the focus group was the potential for bias. Firstly, Dr Romy

Sherlock was sat in the room taking notes throughout the focus group. Although not all of

the participants knew her, she had been involved in the provision of some of the groups

that participants had been part of. Therefore, Dr Sherlock’s presence was not neutral.

However, having more participants than researchers tends to dilute the researcher's

influence and therefore may reduce some of this bias (Forrester, 2010). A further bias is

that as only six people attended the focus group, these six people might have been those

who benefitted most from the service and therefore able to come in to share their view.

One way in which these biases could have been addressed is if two or three other focus

groups were conducted and therefore transcripts could be compared, as recommended by

Guest, Namey and McKenna (2017), who suggest that 80% of all themes are revealed

within two to three focus groups.

The current study had a sample size of six. Although this was large enough to provide

rich data and a good insight into how people felt about the LwP service, perhaps this was

not truly representative of the views shared by others who were not part of the focus

group. Approximately 1000 people are referred to the LwP service each year and of

these, 125 were invited to be part of the focus group. Therefore, the focus group accounts

for less than 1% of the people referred each year and less than 5% of the people who

were invited to take part. As this was the first focus group done to gain an insight into

patients’ experiences of the LwP, perhaps it would be beneficial for the service to

continue to facilitate these focus groups to allow patients to be involved in the



development of the service. A sample size of six would be ample for another focus group,

as an experimental study highlighted that two focus groups of four participants yielded

more information than one focus group of eight participants (Fern, 1982). In doing this, it

will not only allow more patients voices to be heard, but it will also increase the

reliability of the findings of this research.

Dissemination

The details of the findings of this evaluation project have been shared with the two

commissioners, Dr Romy Sherlock and Dr Fiona Purdie, the team leads for the LwP

service. They have been provided with a copy of the initial thematic analysis, this report

of the project and the poster for the conference. The findings were discussed in person

shortly after the focus group. This was beneficial as it allowed space to give praise to the

team for what they are already achieving and also time to discuss ways in which they can

keep improving the service they provide. It is hoped that the participants voices will be

heard and will contribute to any future changes in the service. Similarly, hopefully the

positive experiences that the participants shared will encourage the team to continue in

their great work and inspire them to continue to grow.

Conclusions

Hearing the patients’ perspectives of the service provided a good insight into many of the

positive aspects of the service that the team is providing. However, it also highlighted

some areas for improvement. Most importantly the participants consistently spoke of the

need for a service that is funded for, and has the authority to, educate other medical



professionals in supporting patients to have an appropriately biopsychosocial

understanding and management of their pain. Moreover, spreading the word about the

service that the LwP team provides is important to ensure that more people who need it

can access the service. This clearly answers the aims of the project which were to gain an

understanding of patients’ experiences of the service as well as identifying any factors

which could help to improve the service.



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Anderson, J. K., & Wallace, L. M. (2018). Evaluation of uptake and effect on patient-

reported outcomes of a clinician and patient co-led chronic musculoskeletal pain self-

management programme provided by the UK National Health Service. British Journal of

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Appendices

Appendix A

Question Schedule

Focus group questions

What did you think when you were referred to the service?

What was your experience of the information group?

o Things found helpful/unhelpful

What was your experience of the assessment?

o Things found helpful/unhelpful

Where were you referred to?

o What did you find helpful/unhelpful?

Where were you at when you started?

Where are you at the moment?

Flipchart list

What would you change about the service?

What would you like more of?



Appendix B

Ethical approval email

Dear Lucy

I have now received approval from the reviewers for your ethics, so you are now cleared

to start collecting data for your project.

Kind regards

Debby

Debby Williams

Student Education Service Officer(Programme Co-ordinator)

Clinical Psychology Training Programme

Leeds Institute of Health Sciences

Level 10 Worsley Building

Clarendon Way

University of Leeds

LS2 9NL

Tel: +44 (0)113 3430815



Appendix C

Email thread from R&D department

Hi LucyWe were advised by Rutger Clarke (see below) to use the guide, and decided it is serviceevaluation, not audit.Therefore neither R&D (as it is not ‘research’) or audit (as it is not an audit) needed toknow about your SEP.Hope that helpsRomy

Romy SherlockClinical Psychologist | Clinical Health Psychology | St LukesBradford Teaching Hospitals NHS Foundation TrustT: 01274 36 5176F: 5177http://www.bradfordhospitals.nhs.uk

From: Rutger ClarkeSent: 18 October 2017 15:27To: Romy SherlockSubject: RE:

Hi Romy,

Publishing your work should not impact that, however you should refrain from referringto the project as ‘research’ in your publications as you may be challenged and asked todemonstrate proof of regulatory/ethical approval.

Kind regards,Rutger

Rutger ClarkeResearch Co-ordinator | Research Management & Support Office | Bradford Institute for HealthResearch, Temple Bank house, BRIBradford Teaching Hospitals NHS Foundation TrustT: 01274 383942F: 01274 382640http://www.bradfordhospitals.nhs.uk



From: Romy SherlockSent: 18 October 2017 15:19To: Rutger ClarkeSubject: RE:

Hi RutgerThanks, this is helpful, and seems to show that neither service evaluation we areproposing require NHS ethics or research approval.Just checking – as it doesn’t mention it anywhere here – does it make a difference if youwant to publish the outcomes?ThanksRomy

Romy SherlockClinical Psychologist | Clinical Health Psychology | St LukesBradford Teaching Hospitals NHS Foundation TrustT: 01274 36 5176F: 5177http://www.bradfordhospitals.nhs.uk

From: Rutger ClarkeSent: 13 October 2017 15:25To: Romy SherlockSubject:

As promised;http://www.hra-decisiontools.org.uk/research/http://hra-decisiontools.org.uk/ethics/

BW,Rutger

Rutger ClarkeResearch Co-ordinator | Research Management & Support Office | Bradford Institute for HealthResearch, Temple Bank house, BRIBradford Teaching Hospitals NHS Foundation TrustT: 01274 383942F: 01274 382640http://www.bradfordhospitals.nhs.uk



Appendix D

Consent Form

Consent to take part in: an evaluation of the Living with Pain service

Thank you for agreeing to take part in this evaluation. Please initial after the following

statements to ensure you have understood what will be involved and confirm that you are

willing to take part.

Name of Participant

Participant’s signature

Date

Add your initialsnext to thestatement if youagree

I confirm that I have read and understand the information sheet providedexplaining the above evaluation project and I have had the opportunity toask questions about the project.

I understand that once the focus group has begun I cannot withdraw fromthe research. Up until the beginning of the focus group, I may withdrawfrom the research without there being any negative consequences. Oncompletion of the focus group my data will be anonymous and form part ofthe data set

I give permission for members of the research team to have access to myanonymised responses. I understand that my name will not be linked withthe project materials, and I will not be identified or identifiable in thereport or reports that result from the evaluation. I understand that myresponses will be anonymised.

I agree for the data I provide to be archived at the University of Leeds.

I understand that other members of the research team will have access tothis data only if they agree to preserve the confidentiality of theinformation as requested in this form.

I understand that other members of the evaluation project team may usemy words in publications, reports, web pages, and other research outputs,only if they agree to preserve the confidentiality of the information asrequested in this form.

I agree that the focus group will be voice recorded, knowing that it will berecorded on an encrypted device and the recording will be stored securelyon a password protected secure computer.



If you would like a summary of the findings from the focus group please leave either your emailaddress or home address below and we will send you a copy on completion of the evaluation.

patients’ experiences of the living with pain service. · 2019. 5. 24. · the living with pain...

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