Community Pain Management Services - Liverpool CCG



2819400-445770Community Pain Management Services Consolidation reportMay 20152273300121285 Contents TOC \o "1-3" \h \z \u Community Pain Management Services PAGEREF _Toc423081665 \h 11.Introduction PAGEREF _Toc423081666 \h 52. Summary and Conclusions PAGEREF _Toc423081667 \h 63. Who did you engage with and how many people did you engage? PAGEREF _Toc423081668 \h 74. Reporting the outcome of the engagement exercise PAGEREF _Toc423081669 \h 85.0 What were the key findings from the engagement activity? PAGEREF _Toc423081670 \h 105.1 Response to the Proposals PAGEREF _Toc423081671 \h 105.2Usage and Experience of Services PAGEREF _Toc423081672 \h 115.3Travel PAGEREF _Toc423081673 \h 136.0 Information Reqirements PAGEREF _Toc423081674 \h 147.0Experience of Chronic Pain PAGEREF _Toc423081675 \h 178.0Overall Conclusion PAGEREF _Toc423081676 \h 1911.0 Were there any conflicting view points? PAGEREF _Toc423081677 \h 2112.0Did the engagement generate other feedback/comments not included in the findings above that the CCG should be aware of? PAGEREF _Toc423081678 \h 2213.0 Were there any unplanned outcomes or unexpected learning as a result of this engagement? PAGEREF _Toc423081679 \h 2314.0 Ongoing engagement with participants PAGEREF _Toc423081680 \h 2315.0 Understanding the engagement approach PAGEREF _Toc423081681 \h 25 Reflecting upon the engagement method are there any key issues we should be aware about when speaking with particular communities again? PAGEREF _Toc423081682 \h 2516.2 What, if anything, worked well about this engagement method? PAGEREF _Toc423081683 \h 2517.0 What should we do differently PAGEREF _Toc423081684 \h 26Appendix 1: -Structured Questionnaire and Briefing Paper for Voluntary Groups and Patients PAGEREF _Toc423081685 \h 28Appendix 2: Online survey patient demographics PAGEREF _Toc423081686 \h 34Appendix 3: Freetext comments PAGEREF _Toc423081687 \h 37Appendix 4: St. Andrews Group Discussions PAGEREF _Toc423081688 \h 45Appendix 5: Breakdown of people engaged PAGEREF _Toc423081689 \h 48Appendix 6 A note on the Statistics used in the Pain Management Services Consolidation Report PAGEREF _Toc423081690 \h 501.Introduction1.1 This report consolidates the findings of six separate engagement exercises gathering the views and opinions of patients and public to proposed changes to Pain Management Services. The six engagement exercises were:Praxis: A face to face survey of 11 patients attending Pain Management clinics across Liverpool using a structured questionnaire.Voice of Nations: Group explanation and one to one interviews with 35 respondents at LA Health and Wellbeing Clinic and Pentecost Baptist Church Kensington.Online survey: 55 respondents completed the on-line structured questionnaire. Respondents profile includes ‘communities of interest’, ‘members of the public’ and ‘existing service users’.St. Andrew’s Community Network, community pain management service: Consultation sessions, followed up with one to one interviews.Age Concern Liverpool and Sefton: Group discussions and one to one questionnaire completion with 25 older people.Chinese Wellbeing: Face to face interviews with 25 service usersSahir House: A focus group, and in depth interviews with 12 service users and one support worker.1.2In total 164 people were engaged as part of the Pain Management Services engagement project. The methodologies employed in each of these engagement exercises appear below. A copy of the structured questionnaire is included in Appendix I. All interviews took place between 9th and 27th March 2015.1.3Throughout this project, researchers had been mindful of the unique circumstances of individual respondents and had adjusted their approach and methodology accordingly. This poses a challenge in consolidating findings into one overall perspective but equally it is vital that the findings pertaining to particular ‘sub-populations’ are preserved in their entirety – such is the uniqueness of their experiences, opinions and concerns.1.4Finally, this consolidation report is based solely on the final reports submitted by the different agencies/organisations. We did not have access to the original data sets and this defines the limits of analysis such as our ability to report on a ‘sub-group’ within the overall sampling population e.g. gender or ethnicity.2. Summary and Conclusions2.1The proposal to introduce a community based pain management service was popular with all of the groups involved in the engagement exercise. This is demonstrated in the support shown for this option by respondents82% of service users favoured this option (Praxis)82% of online survey respondents100% of engagement activity participants (Voice of Nations)90% of older people (Age Concern)84% of members of the Chinese community (Chinese Wellbeing)85% of people living with HIV (Sahir House)St. Andrews Community Network group welcomed the suggestions for a more localised community pain management service2.2Most respondents (79%) thought the introduction of a community based pain management service would improve their experience of pain services2.3As a general overview most patients did not feel they had been involved in the development of their care plan(s). However this was not the case with older patients, who felt that they had been involved in over half of cases.2.4Most patients would want to receive appropriate information relating to their medical condition from a ‘professional’ at all stages of their treatment pathway i.e. at initial GP appointment, at first appointment with a professional and during the treatment.3. Who did you engage with and how many people did you engage?PopulationPraxisVoice of NationsOnline SurveyChinese wellbeingAge ConcernSahir HouseBME communities- please list 18(25)4People with Learning DisabilitiesPeople with disabilities / sensory impairments59People with Long Term health conditions – please list if specific e.g. diabetes, asthma...(11)41815People with mental health issues21083Older People531(25)(25)Children and Young People20Children & Young People in care/other vulnerable groups- please listReligion/belief groups – please list9157Men 12012127Women102317126LGBTIQ people47Pregnant womenMothers of young childrenVeteransVictims of abusePeople with addiction issuesHomeless peopleRefugees and Asylum seekers12People experiencing poverty20People experiencing social isolation30Traveller communities10Single parentsCarers10TOTAL NUMBER OF PEOPLE113555252513Table 1: engagement demographicsSee Chart One for the combined demographic profile of those respondents participating in the engagement exercise.Chart one: the combined demographic profile of those respondents participating in the engagement exerciseSt Andrews did not record the specific breakdown of the demographic profile of its participants, but it is known that they included people with disabilities, those with long term conditions, some with mental health issues and that the 26 people that took part were female.The St. Andrews Commnity Network group made many valid points and practical suggestions but did not follow the format of the questionnaire and therefore are not included in the statistical data. Their comments are in Appendix 4.4. Reporting the outcome of the engagement exercise4.1 Objectives and which organisation completed each component ObjectiveOrganisationObjective A: In depth feedback from members of relevant communities - likely to be gained from face to face discussion in either one to one or group settings (Qualitative data from smaller numbers of people).Voice of NationsSt. Andrew’sAge ConcernChinese WellbeingSahir HouseObjective B:Wider feedback from a broader range of relevant communities - likely to be through questionnaire (Quantitative data from larger numbers of people)Voice of Nations PraxisOnline SurveySt. Andrew’sSahir HouseObjective C:Feedback from existing service users - likely to be through questionnaire with patients as they attend pain services for their appointment.Voice of NationsPraxisOnline SurveySt. Andrew’sSahir HouseObjective D:Research synthesis and reporting are also required to bring the reports from each engagement Organisation together to producing an overall engagement reportPraxis Table 2: engagement activities 5.0 What were the key findings from the engagement activity? 5.0.1The following proposal was reviewed during the engagement activity: “Patients experiencing pain in Liverpool either receive care in their GP practice or in consultant led pain clinics in hospitals. These are focused on the treatment and relief of pain usually through injections or surgical procedures.The proposal is for a new community pain management service which would help bridge the gap between GP led care and consultant led clinics in hospitals, which would remain unchanged. The service would have a greater focus on helping people manage their pain.A pain management programme would form part of the new service. This is a programme for people with chronic pain which remains unsolved by existing treatments. A pain management programme is a short course during which people learn about pain and ways to try and control and limit the effect pain has on their daily lives. It is delivered in a group setting and looks at all the issues that contribute to a person’s experience of pain, such as depression, anxiety, disability and loneliness, issues we know can make pain management even more complex.”5.1 Response to the Proposals5.1.1The majority of questionnaire respondents thought that the proposal to introduce a community based pain management would better support people experiencing pain. In total 82% respondents answered ‘Yes’ (n=45), while 16% were ‘Not sure’ (n=9), and one person answered ‘No’. Participants in the outreach activities run by Voice of Nations were unanimously in favour of the proposed changes. The St. Andrew’s Pain Group consultation reported that they welcomed the suggestions for a more localised community pain management service and programme for chronic pain sufferers. Age concern reported that over 90% of the older people they engaged felt that the introduction to a community based pain management service would support people better and improve patient’s experience of pain services (n=23). 84% of participants engaged by Chinese Wellbeing answered ‘Yes’ (n=21) while 16% were ‘Not sure’ (n=4). 83% of people living with HIV (PLWHIV) were in favour of the proposal (n=11) while 7% were unsure, citing issues linked with disclosing their HIV status (n=1). Chart two shows the combined results for these options.Chart two: response to proposal5.1.2Similarly most respondents thought the introduction of a community based pain management service will improve patient’s experience of pain services. Analysis of completed questionnaires showed that 76% responded 'Yes' (n=42), while 21% were 'Not sure' (n=12), and only one person responded 'No'. The participants of the Voice of Nations outreach activities thought that ‘a community pain management service will be ideal and very instrumental in empowering them to become an active and integral part of their own pain management choices, and thus greatly improve their overall experience and lifestyle’. 5.2Usage and Experience of Services 5.2.1Individuals who completed the online survey were currently using, (or had used previously) pain management services in either Broadgreen Hospital, the Royal Liverpool Hospital or the Walton Centre in 27% of cases (n=15). A further 13% had used non NHS pain management services (n=7), while 60%, had not used any of these services (n=33). 60% of participants in the outreach activities had not used any of the NHS reviewed services. Of those that had accessed pain management services 60% had done so at the Royal Liverpool and Broadgreen Hospital. The remaining 40% said they are using/have previously used other non NHS services to manage their pain (including holistic therapies, positive thinking and prayer). Over 50% of the people engaged by Age Concern had used NHS pain management services (n=13), while ‘a couple’ had used other services such as physiotherapists (n=2). Chinese Wellbeing reported that 48% of their respondents who suffered chronic pain had used an NHS pain management service (n=10). 46% of PLWHIV had accessed NHS pain services (n=6) of these 50% were happy with the services that they received (n=3), while 50% were unhappy, (n=3). 5.2.2Of the 22 survey respondents who have used pain management services 23% (n=5) felt the ‘right person was supporting them with their pain’. 50% (n=11) did not feel they were being supported correctly, while 27% (n=6) were unsure. Service users who had taken part in outreach activities were significantly more likely to consider that they had the right person supporting them with 71% responding favourably (n=15). Of the remainder, a single patient responded 'No' (5%) while the rest were unsure (24%, n=5). Older people engaged by Age Concern who had used the services felt that they were supported by the right person in 56% of cases (n=14). 5.2.3When the 22 survey respondents who have used pain management services, were asked if they felt the interventions they had received had helped them manage their pain, 27% of respondents replied 'Yes' (n=6), 45% replied 'No' (n=10) and the remainder were unsure, (27%, n=6). 60% of older people identified by Age Concern felt that the interventions had helped them manage their pain (n=15). 50% of pain management service patients interviewed by Chinese Wellbeing felt that the intervention they received had helped them to manage their pain (n=5).5.2.4Service users were asked if they felt involved in the development of their care plans. Only 20% of services users who had taken part in outreach activities felt that they had been involved, while the remainder said that they had not been involved at all. 27% of survey respondents felt that they were involved in developing their care plans (n=6), 68% felt that they had not been involved (n=15) and 5% were unsure (n=1). In contrast to this, over half of the older people engaged by Age Concern stated that they felt involved in the development of their care plans (n=13). Only 40% of Chinese Wellbeing respondents felt that they had been involved in the development of their care plans (n=4).5.2.5None of the patients who had taken part in outreach activities had attended a pain management course. 23% of survey respondents had attended a programme, (n=12), while 77% had not, (n=41). Of those who had attended a programme 33% said it had improved the quality of their life (n=4). Respondents were asked to comment further on their answers, typical responses included: “The person I saw was quite rude and not very understanding or prepared to listen to me properly, he liked the sound of his own voice and it’s his way or nothing.” “Due to language barrier, I could not attend the course.” “I have no doubt that I would not be in work today had I not attended a PMP.”48% of older people engaged by Age Concern had attended a pain management course, typical comments included:“Good service” “Felt much better after treatment” “Still in a lot of pain”No patients from the Chinese Wellbeing consultation had attended a pain management programme.5.2.6Questionnaire respondents mostly agreed that the Community Pain service offering home visits for housebound patients ‘would be helpful’ with 84% responding favourably to the suggestion (n=42), only 10% did not agree (n=5), with the remaining 6% being unsure (n=3). The vast majority of older people engaged by Age Concern felt that the Community Pain service should offer home visits. Similarly 100% of Chinese Wellbeing respondents stated that they felt home visits for housebound patients would be useful. 100% of PLWHIV expressed support for home visits, (n=13), particularly those who were housebound.5.3Travel 5.3.1Participants were asked how they would normally travel to their appointments; they identified the following modes of transport.Mode of Transport UsedPraxisOnline SurveySahir HouseActual No. (n = 10)% of All JourneysActual No. (n = 50)% of All JourneysActual No. (n = 13)% of All JourneysWalk110%48%431%Bus440%918%1078%Car550%2448%431%Train--24%--Taxi--918%18%Bicycle--24%--Other (Ambulance, Mobility Scooter)--8---Table 3: mode of transport used48% of the older people Age Concern engaged with used a taxi to attend medical appointments (n=12), other methods included travelling by car, with family or by ambulance. Most of the participants in the Chinese Wellbeing consultation use public transport to travel to appointments.6.0 Information Reqirements6.1Respondents were also asked how they would like to receive information about their pain. The results were as follows:How they would like to receive informationPraxisOnline SurveySahir HouseActual No. (n=11)% ResponsesActual No. (n=50)% ResponsesActual No. (n=13)% ResponsesFrom a professional1091%4080%969%From a leaflet327%1224%646%Training/education support545%2448%1078%Through peer support327%2346%1078%Personalised tools436%1836%860%Websites218%1836%646%Email436%1326%753%Social media327%918%431%Smartphone Apps19%1122%431%Other--612%--Table 4: receiving informationDuring the Age Concern engagement older people indicated that they would like to receive information from a variety of sources with professionals and leaflets being the most popular options, with many of the people indicating that they would like information from more than one source. Similarly participants in the Chinese Wellbeing indicated that they would prefer to receive information from either a professional or leaflets. Chart three shows the combined results for these options.Chart three: preferred option for receiving information6.2Respondents were also asked to indicate at which point in the appointment process it would be most beneficial to receive any information.Timing of this informationPraxisOnline SurveySahir HouseActual No. (n=11)% ResponsesActual No. (n=50)% ResponsesActual No. (n=13)% ResponsesAt your first GP appointment982%3366%860%At first appointment with specialist service1091%3060%753%During treatment218%2346%431%On discharge19%1428%216%Other--36%--Table 5: timing of informationThe vast majority of older people engaged with wanted information provided at their first GP appointment, however some people interviewed asked for this to be given more than once at other key stages of their treatment as well. Respondents from the Chinese community indicated that they wanted to receive information at their first appointments, with specialist services and during treatment. Chart three shows the combined results for these options.Chart Four: preferred time for receiving information 6.3The following factors were identified as issues to consider when choosing clinic locations:Factors to considerPraxisOnline SurveySahir HouseActual No. (n=11)% ResponsesActual No. (n=50)% ResponsesActual No. (n=13)% ResponsesAccessibility by public transport873%3264%1293%Car parking764%2958%753%The clinic environment545%2856%860%Other (friendly supportive staff)19%1020%--Table 6: clinic location factorsFactors identified as important when choosing a clinic location by older people taking part in the Age Concern consultation included, accessibility, car parking facilities and the clinic environment. The most important factor for respondents in the Chinese Wellbeing consultation is access by public transport. 7.0Experience of Chronic Pain7.1All 11 patients interviewed by Praxis had experienced chronic pain, with 71% of respondents in the online survey agreeing that they had (n=40), 29% had not experience pain that lasted for longer than three months (n=16). 10 Participants in the Voice of Nations engagement exercises were currently suffering from chronic pain. 84% of older people engaged by Age Concern experienced chronic pain (n=21). 84% of the Chinese community engaged by Chinese Wellbeing had experienced chronic pain (n=21).7.2When asked to comment on the impact that pain had on mobility the majority, 10 patients of Praxis interviewees had ‘some problems with walking about’, one patient had ‘no problem with walking about’. 70% of online survey respondents had ‘some problems with walking about’ (n=27), 15% were confined to bed (n=6) and 15% had no problems with their mobility (n=6). Of the participants in Voice of Nations activities who suffered from chronic pain 70% had some problems walking about (n=7), while 10% were mostly confined to bed (n=1). 81% of the Chinese Wellbeing respondents who suffered chronic paid said that they experienced some problems walking about (n=17). 7.3The impact of pain on respondents’ ability to look after themselves was also considered. 76% of Chinese Wellbeing's respondents who experienced chronic pain had some problems washing or dressing (n=16). 60% of Age Concern’s respondents had problems washing, dressing and performing their usual activities (n=15). 28% of online survey respondents had no problems looking after themselves (n=11), while 41% indicated that they had some problems washing or dressing, (n=16), and 10% were unable to wash or dress themselves (n=4), the remainder (n=8) had other comments, some of which are shown below. The patients interviewed by Praxis responded, saying that two ‘have no problems looking after themselves’, while eight patients ‘have some problems washing or dressing themselves’ and 1 patient ‘is unable to wash or dress themselves’. 77% of PLWHIV reported that they had difficulty with daily activity, including walking, washing, dressing and/or performing their usual activities (n=10). Online survey comments included: I have discomfort and some problems however I look after myself regardlessI struggle with washing and have adapted my clothing to no fastenersI am able to look after myself but have to take breaks between washing and getting dressed as with other tasks as I have pain associated with fatigue7.4Respondents asked about the impact of pain on their usual activities. Praxis interviewed 7 patients who ‘have some problems with performing their usual activities’, and 4 patients ‘are unable to perform their usual activities’. The online survey reported that 54% of respondents had some problems (n=21), with 36% being unable to perform their usual activities (n=14) and 10% having no problems (n=4). 80% of those attending Voice of Nations engagement activities who were suffering chronic pain had problems performing their usual activities. As noted above 60% of Age Concern’s respondents had problems washing, dressing and performing their usual activities (n=15). Only 14% of Chinese Wellbeing respondents were unable to perform their usual activities (n=3). As noted above, 77% of PLWHIV reported that they had difficulty with daily activity, including walking, washing, dressing and/or performing their usual activities (n=10).7.541% of respondents to the online survey experienced moderate pains or discomfort (n=16), while 59% experienced extreme pain or discomfort (n=23). Praxis interviewees reported experiencing moderate pain in four cases and extreme pain in seven. 67% of Chinese Wellbeing respondents indicated that they were experiencing moderate pain or discomfort (n=14), while 33% were experiencing extreme pain (n=7).7.6A majority of patients interviewed by Praxis considered themselves to be either ‘extremely anxious or depressed’ (n=3) or ‘sometimes anxious or depressed’ (n=5), only three patients did not consider themselves to be ‘anxious or depressed’. Respondents to the online survey were sometimes anxious or depressed in 41% of cases, (n=16), extremely anxious in 33% (n=13) and not anxious in 25%, (n=10). 70% of participants in Voice of Nations engagement activities who experienced chronic pain were sometimes anxious or depressed. Age Concern reported that over 50% of the older people they engaged with felt anxious or depressed at some point (n=13). Chinese Wellbeing reported that 57% of their respondents were sometimes anxious or depressed (n=12), while 33% were extremely anxious or depressed (n=7). 100% of PLWHIV stated that they suffered with Anxiety and Depression on most days as a result of their pain, (n=13).7.7Patients were asked ‘what would make you more confident about managing your pain?’ The results were as follows:Managing your painPraxisOnline SurveyActual No.%Actual No.%Personalised tools655%1932%Meeting other patients436%712%Understanding the underlying condition better982%2237%Having goals and targets436%47%Involving my family/carer in appointments545%712%Other0-1220%Table 7: managing painN.B. Care should be taken with small samples.52% of respondents to the Chinese Wellbeing consultation stated that they would feel more confident about managing pain if they had a better understanding of their underlying condition (n=11). ‘Other’ comments included:More tests to establish any additional conditionshaving something that works to reduce painAside from my wonderful GP an improved attitude towards chronic pain in the area, being taken seriously when accessing medical services. not everything is a result of my diagnosis... sometimes I feel as though specialists believe my condition causes the rain to fall soAll of above8.0Overall ConclusionThe majority of respondents from the different strands of the engagement exercise are in favour of the proposal to introduce a community based pain management. They were similarly supportive of the idea that a community based pain management service would improve their experience of pain services.9.0 Were there any findings/ points of view that were specific to a particular group or community?9.1The Voice of Nations engagements identified a number of specific concerns affecting the BME community:Two case studies identified BME men who had received inadequate treatment for their conditions from their GPsIt was felt overall that language, culture and communication were still barriers to getting appropriate services from GPsInitial and follow up appointments were areas of difficulty for participants who worked, with long delays being common9.2Ten of the eleven patients interviewed by Praxis were women and there was consistency in terms of their support for a community based pain management service. Clearly caution needs to be applied in relation to this finding given the very small size of the sample.9.3The St. Andrew’s Group noted that some members of their group were unable to attend due to mobility issues and would require support in the home. .4Age Concern’s findings indicated that the main views of older people were heavily in favour of introducing a community based pain management service as they felt it would improve their experience of pain management services. They also felt that home visits were a high priority, with cancelled appointments being particularly problematic when attendance is largely by taxi or ambulance. 9.5Chinese Wellbeing's respondents were largely older people, (68%, n=17) who speak very little English. The majority of general comments, (84%, n=21) related to providing language support and translated leaflets. A typical comment was: "I cannot speak English. I need Cantonese interpretation during my appointment. It is better to join a session together with other Chinese. I will feel more safe and easy to go through the treatment."9.6Participants from Sahir House had a number of specific concerns relating to disclosing their HIV status and attendant stigma. A typical comment was:“I wouldn’t feel very comfortable with settings outside the house (Sahir House) for reasons of confidentiality.” 9.7The online survey data was not suitable for drawing any reliable conclusions in this area.10. Were there any pros and cons that came out of discussions/qualitative feedback?10.1Voice of Nations conducted discussions and gathered qualitative feedback. The pros and cons that were identified were as follows:Pros:Participants achieved greater understanding about underlying causes of conditions and how to manage their lifestylesGroup sessions were popular as they allowed communication with other groups and patients with similar conditionsCons:Use of questionnaires was considered stressful by some participants, due to lack of confidenceNot all areas of the questionnaire were appropriate for the participants10.2The St. Andrew’s Group felt that the proposals were welcome and identified the following issues:Pros:Discussing pain with psychologistsAttending occupational therapy sessionsLearning pacing and activity management skillsCommunicationMindfulness and information on balanced lifestylesCons:Tailoring exercises around groups of chronic pain sufferers with different needs would be difficult.Possible impact on benefits if attending sessions and doing physical exercises10.3The older people engaged by Age Concern felt that a community based pain management service would be beneficial and improve their experience of pain management.10.4The respondents in the Chinese Wellbeing consultation were all agreed about the benefits of home visits for housebound patients. Additionally language support was indicated as a key issue to be considered in creating a fully accessible service.10.5PLWHIV in the Sahir House engagement were in favour of home visits, as well as stressing the benefits of further help, support and training in managing their pain, which would help to empower and encourage them, while bringing them out of isolation.11.0 Were there any conflicting view points?11.1The Voice of Nations engagement exercises drew out some conflicting view points, particularly between participants who suggested that pain management services should have a more pronounced religious aspect and those who felt that this would be inappropriate for some service users. 11.2The results for the Praxis survey showed that the majority of patients (nine and ten respectively for the first two questions) were in support of the community based pain management service; there were no dissenting voices to the proposal.11.3The online survey provided a similarly uniform response, with only one reply suggesting that the community based service would not better support people.11.4The St. Andrews group did not contain any conflicting viewpoints. 11.5The Age Concern consultation did not contain any conflicting viewpoints.11.6The Chinese Wellbeing consultation did not contain any conflicting viewpoints.11.7The Sahir House consultation did not contain any conflicting viewpoints12.0Did the engagement generate other feedback/comments not included in the findings above that the CCG should be aware of?12.1There were a number of comments and pieces of feedback from the Voice of Nations engagement exercises. A brief summary of these follows:Time slots for GP appointments are too brief. Professionals did not appear to have time to deal with patients as individuals once notes and records had been takenThe assessment exercise was repetitive, which is especially problematic for patients who are in pain and fatiguedPatients need reassuring that they are being listened to and their concerns are taken seriouslyPatients from BME communities were not always able to afford to access optician and dentist services, which affected their quality of life significantly12.2Members of the St. Andrew’s group reported experiencing a lack of continuation of services across between different services. Issues included frequently having to describe their situation, medication and symptoms to new professionals as well as needing to describe previous appointments and activities to them. Additionally there were a number of comments related to negative responses from medical professionals, these included:medical professionals not believing their symptomsmedical professionals denying their diagnoses being sent away again and again with tablets had little or no effect or had adverse effect, and an unwillingness to look into anything elsebeing told they should be able to deal better with their symptomsbeing offered treatments that weren’t considered relevantBeing put on waiting lists but never receiving the serviceLack of continuity of staff – having to re tell their story over and over to different peopleNon uniformed services – some medical professions were excellent and really helpful, others were un-empathic, lacked knowledge on chronic pain or unwilling to support or listen. It was noted that young GP’s were generally better at empathising and taking time to understand and listen and felt like generally this would improve over time as training seems to have improved. As well as characteristics of services that were considered to be the most successful:Brought together people with similar experiences that enabled individuals to feel less aloneProvided practical tips that enabled them to cope with their pain on a day to day basis, including relaxation and meditation, distraction techniques, coping mechanisms etc. Made them feel like their symptoms and experience were validated by professionalsWere peer led 512.3The Age Concern consultation noted that some of their participants commented upon the waiting time to get appointments, and the lack time being spent on them once their treatment programmes were in place.12.4The Chinese Wellbeing consultation identified lack of language provision and cultural awareness as issues preventing easier access. 12.5Neither the Sahir House Survey, Praxis survey nor the online survey produced any significant findings or comments that do not appear in the report. All comments from these surveys are provided verbatim in Appendix III.13.0 Were there any unplanned outcomes or unexpected learning as a result of this engagement?13.1The Voice of Nations engagement identified unexpected learning. They were concerned by the proportion of BME community members that ‘seemed to be completely ignorant, isolated and unaware of available NHS services within the community’, they identified churches and faith groups as useful venues to attempt to rectify this situation.13.2The St. Andrews group reported that their consultation had lead to information and resources being provided to enable the group to deliver their own mindfulness sessions. Additionally it had encouraged further participation with members of their Facebook page.13.3The Chinese Wellbeing consultation engaged many respondents who lived alone and had mobility issues, which alongside language barriers are often causes of social isolation in the community, a noted concern. The engagement process served to ensure the wellbeing of service users, providing company and a sense of being valued.14.0 Ongoing engagement with participants 14.1Voice of Nations identifed a number of venues for ongoing engagement with their paricipants, these include, the senior pastor of PBC in Kensington, who would like to welcome many more of such empowerment sessions, and engagement activities in his church. Additionally five current service users would like to be involved in ongoing involvement with NHS Liverpool CCG, and be updated on services.14.2Chinese Wellbeing identified six service users who expressed an interest in becoming more involved, learning more about Living Well and Healthy Aging. This would be dependent on clear objectives and language support however.15.0 Understanding the engagement approach 15.1The following issues were identified by Voice of Nations as areas to be aware of:Language, faith and cultural barriers must be acknowledgedEngaging someone from a similar background, culture or faith group makes an engagement activity more productive Empowering groups must be an integral part of engagement activity 15.2The St. Andrew’s group felt that the questionnaire did not adequately reflect the experiences of chronic pain sufferers and contained questions that were difficult to answer. Questions 4,5,6,7 and 8 were noted as being particularly problematic.15.3Age Concern identified the following issues as areas to be aware of:Terminology when speaking to older people needs to be as concise as possible Giving plenty of time to engage with them Giving 1 to 1 support A lot of older people through poor eyesight and dexterity issues find it difficult to complete surveys etc on their own and the support of someone to assist is very helpful Depending on the individual it can be difficult getting them to engage any further than answer the question presented to them15.4Chinese Wellbeing identified the following issues in respect of the Chinese community:Language issues Taking time to clearly explain the engagement process and aims16.0 What, if anything, worked well about this engagement method?16.1The Voice of Nations engagement identified several successes, including:The Community Health Empowerment DayOne to one sessionsHolistic therapiesProvision of lunch and services for children16.2Participants in the St. Andrews group reported being pleased with the engagement process, they compared it favourably to negative experiences with medical professionals. They also found the discussions around finding solutions both empowering and enjoyable.16.3The Praxis engagement showed that the questionnaire appeared to work well, questions could be answered without the need for any clarification by the interviewer. The online survey also appeared to work well, with a significant number of completed surveys.16.4Age Concern identified several areas where the engagement worked well, including:Each older person could express their views openly Confidential information could be discussed as it was on a one to one basis Any additional explanation specific to the individual can be given Given that each engagement was on a one to one basis gave the individuals time and help to answer the questions and express their views The method of collection was structured using the questions supplied16.5Chinese Wellbeing identified areas in which the engagement worked well, including:One to one process was appreciated by respondentsRespondents were able to understand questions fully and consider answers carefullyExisting knowledge of the community and service users enabled engaging service users at short notice16.6Sahir House conducted a comprehensive engagement including a literature review, focus group, semi structured interviews and questionnaires. They did not identify any areas for improvement.17.0 What should we do differently17.1Voice of Nations suggested that more time and detailed explanations were needed to allow participants to begin to grasp and better understand their conditions. They recommended more face to face engagement activities with patients who share similar background and values. They were critical of structured questionnaires particularly for respondents whose first language is not English – they have the potential to leave participants disengaged.17.2The St. Andrew’s group identified improvements that could be made in the future, including allowing more time to target individuals who struggle to attend sessions due to mobility issues and consulting service users when designing future questionnaires.17.3Age concern had a number of improvements that they felt could improve the process:More time to be allocated for the engagement activity and conversations to take place The terminology used was confusing and needed further explanation The questions could get a little confusing and some of them should have had a “not applicable” option such as Q11, Q12 and Q13 so that we could record accurately 17.4Chinese Wellbeing identified a number of areas which could be improved in future:Longer lead in time to facilitate translation of written materials and questionnaireLonger face to face interviews to ensure service users’ full understanding, particularly where they are older people with English as a second languageEngagement process is ongoing and dynamic17.5Praxis offered four suggestions:A structured questionnaire should always be piloted even if it is to eliminate simple design flaws or routing problems. The questionnaire could have been more efficiently designed.Thought should be given to a more appropriate method of classifying patients and not simply relying on the standard ‘diversity’ classification. The degree of patient disability and mobility might have provided some relevant insights that could have influenced service design and delivery.The idea of using a video to describe the three options was not tested but it could be useful in future engagement exercises. It would ensure a standard description was given to each patient removing the possibility of some unintended influence/bias by the interviewer.The printed brochure offered no obvious advantage over the printed card used by interviewers to communicate details of the three options.Appendix 1: - Briefing Paper and Structured Questionnaire Liverpool CCG created a briefing paper and structured questionnaire for use by the voluntary groups to guide their discussions and was made available online.Briefing PaperPain Services Asking for ViewsWho are we?NHS Liverpool Clinical Commissioning Group is made up of all the GP Practices in Liverpool. We are responsible for planning and buying local health services - this includes hospital and community services. What do we want to know?We are interested in hearing your experience of pain services and your views on how a possible new service for patients with chronic pain could be improved to benefit patients. By chronic pain we mean physical pain that lasts for longer than three months.What will we do with the information?All of the information that you provide to us will be kept confidential. It will not be shared with your GP, hospital or anyone else involved in your care. The information that is shared with us will be used to help improve pain services for patients.What are we proposing?Patients experiencing pain in Liverpool either receive care in their GP practice or in consultant led pain clinics in hospitals, these are focused on the treatment and relief of pain, usually through injections or surgical procedures. The proposal is for a new community pain management service which would help bridge the gap between GP led care and consultant led clinics in hospitals, which would remain unchanged. The service would have a greater focus on helping people manage their pain. A pain management programme would form part of the new service. This is a programme for people with chronic pain which remains unresolved by existing treatments. A pain management programme is a short course during which people learn about pain and ways to try and control and limit the effect pain has on their daily lives. It is delivered in a group setting and looks at all the issues that contribute to a person’s experience of pain, such as depression, anxiety, disability and loneliness, issues we know can make pain management even more complex. During the programme, patients will attend sessions with physiotherapists, psychologists, pain clinicians, pharmacists, and occupational therapists. Patients will learn why people experience pain and how to set personal goals, learn pacing, communication and mindfulness skills and receive information on balanced lifestyles as well as signposting to support groups and information. The outcome of the programme is not treatment; it will not ‘cure’ pain but will empower patients to better manage their day to day lives.The Walton Centre currently offers the only pain management programme for patients with chronic pain. This is very successful, however it is limited to patients with severe pain and there is a long waiting list. The new service would accept a much wider group of patients. This would be anybody aged 18 and over, who has experienced pain for longer than three months, whose pain is not associated with cancer, whose pain is present most of the time with varying intensity and who is not attending other pain services. What are the benefits for patients?We think the benefits of the proposed community pain service will be:To develop people’s understanding of their causes of pain and how to manage it.Signpost people to additional rm, empower and support people to determine their own goals, priorities and treatment, which can help people improve the management of their pain and their quality of life.Check that the best medication for the individual patient has been prescribed and it is being taken correctly.Reduced waiting times for Hospital Pain Clinics as only patients whose pain can be relieved with treatment will be referred.Increased access for patients as there will be an additional pain clinic/s in the community meaning patients potentially will travel less for their pain appointment.To offer an enhanced service which focuses on pain management not pain treatment, which we know is not always possible with chronic pain. At present patients whose pain is not treatable have limited support from NHS services.Once established, the Community service could offer domiciliary visits for housebound patients.Pain Services Asking for Views Location (if applies)……………VCSE organisation (if applies)…………QUESTIONS1. Do you think the proposal to introduce a community based pain management service will better support people experiencing pain? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure2. Do you think the introduction of a community based pain management service will improve patient’s experience of pain services? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure3. We define chronic pain as pain that lasts for longer than 3 months. Do you currently experience chronic pain as defined here? FORMCHECKBOX Yes FORMCHECKBOX No - If no move to question 104. Thinking about your pain on most days and the impact it was on your mobility, please tick one of the following options FORMCHECKBOX I have no problems with walking about FORMCHECKBOX I have some problems with walking about FORMCHECKBOX I am confined to bed5. Thinking about your pain on most days and the impact it was on your ability to look after yourself, please tick one of the following options FORMCHECKBOX I have no problems with looking after myself FORMCHECKBOX I have some problems washing or dressing myself FORMCHECKBOX I am unable to wash or dress myself FORMCHECKBOX Other – please specify______________________________________6. Thinking about your pain on most days and the impact it was on your usual activities (e.g. work, housework, school, family or leisure activities), please tick one of the following options FORMCHECKBOX I have no problem with performing my usual activities FORMCHECKBOX I have some problems with performing my usual activities FORMCHECKBOX I am unable to perform my usual activities7. Thinking about your pain on most days and the discomfort you experience, please tick one of the following options FORMCHECKBOX I have no pain or discomfort FORMCHECKBOX I have moderate pain or discomfort FORMCHECKBOX I have extreme pain or discomfort8. Thinking about your pain on most days and any anxiety or depression you may experience, please tick one of the following options FORMCHECKBOX I am not anxious or depressed FORMCHECKBOX I am sometimes anxious or depressed FORMCHECKBOX I am extremely anxious or depressed9. What would make you more confident about managing your pain? FORMCHECKBOX Personalised tools FORMCHECKBOX Meeting other patients FORMCHECKBOX Understanding the underlying condition better FORMCHECKBOX Having goals and targets FORMCHECKBOX Involving my family/carer in appointments FORMCHECKBOX Other – please describe ____________________________________10. How would you describe yourself? FORMCHECKBOX I am using/have previously used, the NHS pain services provided by The Royal Liverpool and Broadgreen Hospital FORMCHECKBOX I am using/have previously used the NHS pain services provided by Spire Hospital FORMCHECKBOX I am using/have previously used the NHS pain services provided by The Walton Centre FORMCHECKBOX I am using/have previously used other non NHS services to manage my pain - Please describe ___________________________________ FORMCHECKBOX I have not used any pain services but may do in the future FORMCHECKBOX None of the above11. If you have used a pain services, do you feel the right person is supporting you with your pain? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure12. If you have used pain services, do you feel the interventions you have received have helped you manage your pain? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure13. If you have used pain services, do you/did you feel involved in the development of your care plan/s? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure14. A pain management programme is a short course during which people learn about pain and ways to try and control and limit pain. Have you attended a pain management programme? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure15. If you have attended/are attending a pain management programme, has the programme improved your quality of life? FORMCHECKBOX Yes FORMCHECKBOX No Please tell us why you have chosen this answer ____________________________16. The Community Pain service could offer home visits for housebound patients. Do you think this would be helpful? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Not sure17. How would you like to receive information about your pain? FORMCHECKBOX From a professional FORMCHECKBOX From a leaflet FORMCHECKBOX Training / education session FORMCHECKBOX Through peers support – i.e. somebody who has gone through what you’re going through FORMCHECKBOX Personalised tools FORMCHECKBOX Websites FORMCHECKBOX Email FORMCHECKBOX Social media FORMCHECKBOX Smartphone apps FORMCHECKBOX Other – please specify18. When would you like to receive information about managing your pain? (You may tick more than one option) FORMCHECKBOX At your first GP appointment FORMCHECKBOX At your first appointment with the specialist service FORMCHECKBOX During treatment FORMCHECKBOX On discharge19. How do you/would you travel to your appointments? FORMCHECKBOX Walk FORMCHECKBOX On the bus FORMCHECKBOX By car FORMCHECKBOX By train FORMCHECKBOX By taxi FORMCHECKBOX By bike FORMCHECKBOX Other (please specify20. What do you think we should consider when choosing clinic locations? FORMCHECKBOX Accessibility by public transport FORMCHECKBOX Car parking FORMCHECKBOX The clinic environment FORMCHECKBOX Other – please state ________________________________________________ 21. What are the first digits of your postcode? e.g. L1, L18, L422. Do you have any other comments about the Community Pain Management Service, or issues that you feel we may not have considered? Appendix 2: Online survey patient demographicsDo you identify yourself as:Answer OptionsResponse PercentResponse CountMale45.5%20Female52.3%23Prefer not to say2.3%1answered question44Table 8: online survey genderIs your current gender identity the same as the one you were assigned at birth?Answer OptionsResponse PercentResponse CountYes97.7%43No2.3%1Unsure what the question means0.0%0answered question44Table 9: online survey gender identityPlease select from one of the following age categories:Answer OptionsResponse PercentResponse CountUnder 180.0%018 -250.0%026-4436.4%1645-6447.7%2165-759.1%476+6.8%3Prefer not to say0.0%0answered question44Table 10: online survey ageDo you consider yourself to have a disability?Answer OptionsResponse PercentResponse CountYes56.8%25No36.4%16Prefer not to say0.0%0answered question44Table 11: online survey disabilityPlease tick if you have any of the following:Answer OptionsResponse PercentResponse CountPhysical disability40.5%17Visual Impairment7.1%3Learning Disability0.0%0Hearing Impairment / Deaf7.1%3Mental illness/ distress21.4%9Dementia0.0%0Long term illness that affects your daily activity45.2%19Prefer not to say2.4%1Other (please specify)4answered question42Table 12: online survey specific disabilityPlease describe your sexual orientation:Answer OptionsResponse PercentResponse CountBisexual2.3%1Heterosexual81.8%36Gay/Lesbian6.8%3Prefer not to say9.1%4Other (please specify)answered question44Table 13: online survey sexualityWhich of these options best describes your ethnic background?Answer OptionsResponse PercentResponse CountAsian or Asian British0.0%0Bangladeshi0.0%0Indian0.0%0Pakistani0.0%0Black or Black British4.5%2African4.5%2Caribbean0.0%0Chinese or Chinese British0.0%0Chinese0.0%0Asian & White0.0%0Black African & White0.0%0Black Caribbean & White0.0%0Arabic0.0%0British40.9%18English34.1%15Irish4.5%2Scottish0.0%0Welsh2.3%1Polish0.0%0Latvian0.0%0Gypsy / Traveller0.0%0Prefer not to say9.1%4Other (please specify)2answered question44Table 14: online survey ethnicityDo you have a religion or belief?Answer OptionsResponse PercentResponse CountYes59.1%26No29.5%13Prefer not to say11.4%5answered question44Table 15: online survey religious beliefIf yes please tick one of the below:Answer OptionsResponse PercentResponse CountBuddhist0.0%0Christian80.8%21Hindu0.0%0Jewish3.8%1Muslim0.0%0Sikh0.0%0No religion3.8%1Prefer not to say11.5%3answered question26Table 16: online survey religion Appendix 3: Freetext comments Thinking about your pain on most days and the impact it has on your ability to look after yourself?Varies day to dayDue to an unsteady gait and ataxia tremors and spatisicityI have discomfort and some problems however I look after myself regardlessi struggle with washing and have adapted my clothing to no fastenersI get tired quite easily.problems sleeping due to painI have great difficulty with these activitiesI am able to look after myself but have to take breaks between washing and getting dressed as with other tasks as I have pain associated with fatigueWhat would make you more confident about managing your pain?More tests to establish any additional conditionsSurgeryhaving a medical profession that can provide appropriate help and supportDocs not having great knowledge in chronic painBeing confident that independent bio medical research is being undertaken to find the cause.having something that works to reduce painI would say there's not just one answer, 1,3 & 4 stand out to meAside from my wonderful GP an improved attitude towards chronic pain in the area, being taken seriously when accessing medical services. not everything is a result of my diagnosis... sometimes i feel as though specialists believe my condition causes the rain to fallI would've ticked all of the above but there was no option to do soAll of aboveCoordinated care across disciplines & trustsAnswers 1,3 & 4If you have attended/are attending a pain management programme, has the programme improved your quality of life?Expected a 1.2.1 with pain specialist and it was all group activity focusedThe person I saw was quite rude and not very understanding or prepared to listen to me properly, he liked the sound of his own voice and it’s his way or nothingNo one inform me about the course, and I have no confidence to attend because I cannot speak EnglishNo one inform meI cannot go because of language barrierDue to language barrier, I could not attend the course.No information and cannot speak EnglishNo one tell me or escort me to attendNo informationNo one escort me to attendFrom feedback from other participants with the same diagnosis I am confident that the pain management course is useless for fibromyalgia. every fm sufferer I know that has been in the course has feedback to me that it is no use for fm because our pain is migratoryI went to see pain consultant wasn’t put on a programmeI was assessed at The Walton Pain management clinic, after a very early start and fifteen pounds taxi journey I was told I was unsuitable for the programme because I have severe and enduring mental health condition and the programme was for people who had mental health issues due to painsee No.16Haven’t attended any.I have no doubt that I would not be in work today had I not attended a PMPcheap way to deal with genuine painI am a pain nurse in Aintree Hospitals FazakerleyI am a GP it has definitely improved my patients' livesBetter understanding of limits and what causes my painDo you have any other comments about the Community Pain Management Service, or issues that you feel we may not have considered? E.g. do you think there is anything missing from the proposed range of services? Is there a service/treatment that you have found helpful in managing your pain that we should include? Are there obstacles you have you experienced in managing your pain that we should be aware of?ProposalThe proposal does not state which type of clinician patients would see, consultants, nurse led etc, whether they would have the same level of expertise or ability to prescribe, particularly in the case of medication. It also provides no like for comparison with the current offer. The question about walking around does not consider wheelchair users. The main barrier I have experienced with the current offer is the extremely long waiting time for the initial consultation.This is a cheap useless way to avoid dealing with the pathology of a patient's pain, where there may be deep significant undiagnosed causes.The possibility of self-referral would be good.Great to travel only to local centre for service. This may increase social networking and informal meetings of group participants Chronic pain leads to a range of other linked issues including depression and anxiety. In my opinion support services for these, and other, linked issues should be offered or at least signposted from any chronic pain facility/services.The reason for that it’s going to be more of a community rather than just going into a GP or other clinic to just to be seen as a one off thing. There’s always a power in anything community based because then you know that definitely you know the group of people coming into that communities area going through the same if not exactly the same a similar situation they would be able to talk as a group or even on an individual level and offer moral support and discuss things that if you go to a GP who never have time to show out and all that that’s why the community based would be better Boy you couldn’t get better than the Director of the Pain Management. Yes I think that I was fortunate to get that. I think for other individuals I think it would be an absolute nightmare especially if they haven’t got a diagnosis I don’t know how they would go about it for other people. In that respect I was fortunate because my neuro surgeon was based at the Walton Centre they could refer across gave made it more accessible to me for other people I have no idea. I think it would be a real challenge and battle which it shouldn’t be it needs to be more accessible and potentially I would say GPs or other based community service should be able to refer into community based programmesDifficulty accessing servicesAccess to professionals with knowledge of chronic pain during times of crisis or flare up is difficult and rarely available when is needed which can lead to reverting to old coping mechanisms that are not necessarily helpful habits. Access to complimentary therapies would be wonderful!!!As a GP I fully support this idea. At present pathway is unclear and pts have to wait ages to go on pain management programme and travel far and we need to get in there earlier to improve peoples' quality of life.I only obtained a referral to Walton after a relative told me a new treatment had been authorised, as I asked my GP about it. How do patients know what is available, without asking their GP repeatedly? I don't think anyone was much aware of my pain issues for some years. I didn't moan enough!Some of the issues that we have in our community is that our older generation have difficulty accessing many services which are based around the NHS are the availability of services for pain, transport to and from services and careers to help get them to and from any pain management therapies, There can even be a problem for them to access the doctors surgery as you have to try and book an appointment through a small window of opportunity early in the morning. So many just give up trying to see their GPs and just bare the pain or buy pain killers over the counter at the chemist to managed their own pain.The obstacles I have faced have been in waiting months for referral/assessment I was considered unsuitable for the pain management clinic at Walton due to my mental health issues. This was so distressing to someone who is in constant daily pain and was desperate for some help and support. It actually says on the service website page that people with existing mental health conditions will not be suitable for the pain management programme. I waited months for that appointment, I had to be at the centre for 8am and travelled by Taxi costing ?15 one way, after half an hour of assessments I was refused as I was in treatment for my mental health. I was devastated. I also attended the Fibromyalgia course where one of the senior physiotherapists mimicked slashing her wrists to demonstrate how it would be to feel anxious and depressed every day. I complained and the hospital apologised but...I do not think current pain management services have sufficient training/experience to deal with co-existing mental health conditions. Also when receiving treatment at The Royal for Fibromyalgia, I many times stated I was experiencing severe pain in my back, I was discharged after 8 weeks and offered a referral to the gym as I was told this would help. Eventually after requesting further treatment, I was diagnosed with 3 bulging discs in my spine, one of which is impinging on the nerve and arthritis in my spine. I do think that service need to understand Fibromyalgia/CFS more and that not every symptom can be attributed to this diagnosis. People are being failed in their treatment if this happens.I would like, if possible that Knowsley should be made aware of the lack of pain management clinics in the area. And to please rectify this.Cost of parking to attend hospital clinics, I feel is quite expensivePersonal commentsYes I think there needs to be Ali more research and training for NHS staff who know nothing about our illnesses and them giving a lot of meds to get rid of us they all need retrained and no better way through the patient also holistic approach acupressure massage and reiki reflexology and hydro pool is all proven to work I go weekly it's expensive and should be avail to us all considering the amount of meds is been unnecessary spent I would not go to a pain management programme unless I knew by question exactly what training the pain management staff have and know to me that's vital as the PM today is a waste of tax payer money and doing nothing to help the patientsDue to the insomnia most people can cope better with afternoon/early evening appointments - maybe a morning clinic for those with children and a later clinic for the others. Also the time people are able to sit and focus. Informal surrounding where people can move around but with very comfy chairs for sitting on, not the usual clinic style.I have been assessed and treated by many physiotherapists over the many years I have suffered with debilitating pain. I have mixed results and have been made worse by therapists who do not understand my conditions (fibromyalgia, joint hypermobility and osteoarthritis). I would like to see therapists educated to treat a diverse range of conditions and not offer a one size fits all programme that was originally designed for acute pain not chronic pain. I attended a course of hydrotherapy due to long term pain and limited mobility, and my daughter had to come along to help me dress/undress, and still the therapist offered me a gym membership to follow on from my course - totally inappropriate for me - this was following an assessment!I ended up having a nervous breakdown because of the constant pain I was. I felt like I wasn't being heard and was told on many occasions to just go home take pain relief and see how I felt in a few weeks. Just someone having the time to listen to me and directing me toward the right treatment would of made a huge differenceThrough our work, we have found that sufferers of chronic pain really benefit from meaningful activity that is available to them as chronic pain sufferers but which does not focus on the pain itself. The Reader Organisation delivers shared reading within the pain clinic at Broad Green Hospital. Evaluation of this intervention produced by the University of Liverpool, in partnership with TRO and Dr Andrew Jones, Consultant in Anaesthesia and Pain Medicine at Broad Green, shows that participation in this activity improves quality of life for people with chronic pain by enabling social connections, building community, providing mental stimulation and improvements in mood. All participants agreed that the literature was a vital component in bringing about these benefits. In addition to pain-focussed interventions, we find that people thrive when they have the opportunity to take part in an activity that is well-ness rather than illness focussedI use a combination of the NHS an Osteopath, Chi Kung and Aroma therapy to keep myself fit and mobile. There seems to be little on offer to enable individuals to improve their own situation and become less reliant on the NHSMy experience of the pain management clinic was first through a pain management season at Broadgreen hospital then through referral by my doctor to the clinic. It is a very long process which could be streamlined and more efficient and many appointments are cancelled by the clinic and not rearranged meaning patients are left alone longer. Also GPs then have to bridge the gap and just carry on with the same medication routine without back up from the hospital which is quite frustrating. A service allowing patients to talk to each other would be useful so that those who are unable to socialise can still feel connected to the outside world particularly to those who can relate based on symptoms and illnesses. This could also be used as a way to explore the options open to patients allowing them to feel more involved in their treatments and the various services availablePain killers are affecting my stomach and I feel that perhaps this should be something that should be considered instead of just having to try one lot of medication after anotherI just live with it every night every day it just makes you feel more lonely and with HIV the stigma. How would you tell a person if you met someone else would you get rejected or I don’t know it’s just a very lonely life it just feels as your life is finished A group session once a month and it’s been led by a therapist at Sahir house also other people have chaired it was the community nurse. Brought in a pharmaceutical and the pharmacist from the Royal and they brought in Dental people because a lot of HIV meds can affect your teeth and health on that side. They brought in other occupational people to help support it and run it each month but I haven’t been to every meeting so I couldn’t comment on all of them the ones I have done have been very useful From inside the NHS yes I physically got assaulted attacked. I got myself sectioned and because they found out I was gay because I went in voluntary I had to leave for my safety which wasn’t great so that’s why I have a caution over the NHS running it and not being maybe led by Independents Well I have found meeting other people with similar conditions is of brilliant help. Just listening to other peoples experiences I you know like I said before it makes you feel you are not the only one and they have ideas of when they were feeling like that they got round it and ideas Where my house is because I have this pain I find it hard to climb the stairs to the third floor so I have to go crawling crawling to get there but if I tell them the pain I am going through I take them where I really go I think maybe it would be of help The therapies did work 1 to 1 therapy and yoga and things like that. Mindfulness worked what didn’t work I don’t know what didn’t really work because I always try and do different things. I can’t really find anything that didn’t work because most of the therapies do work in different ways wouldn’t feel very comfortable with settings outside the house (Sahir House) for reasons of confidentiality FibromyalgiaIt would be nice to be able to attend a dedicated fibromyalgia fitness class with an instructor who is qualified and aware of the issues of fibro, ME and other conditions. I believe this would really help with goal setting and motivationFitness group specifically for fibro sufferers would help support and motivateIf you are going to build or delegate a building for Fibromyalgia sufferers, then you should provide an exercise programme that runs weekly, also make it like a community centre that sufferers can go to a couple of times a week, for support and the exercise group, at this moment in time the majority of Fibro sufferers feel pretty much left alone to suffer in silence with no help whatsoever once they have been diagnosed, this I know as I help to run and the Facebook page Fibropool. Hope that helpsPain management for FIBROMYALGIA is very different from managing static chronic pain, what works for people with static pain rarely works for migratory pain, therefore courses should be separate. Specialist need to understand that not everything is the result of a diagnosed condition and they need to approach patients with n open mind. It is crucial to remember that people with chronic health issues are often expert in their own body. We do not choose to have these problems and it is vital for medical professionals to be respectful and listen. This is rarely the case in the present situation. Pain management courses are not conducive to people with widespread pain and related sleep disturbances. Aside from the feedback from FM patients regarding the course at Walton, I would not commit to the course because of the time commitment, I cannot guarantee that I would be able to attend all sessions. In fact I can be pretty sure that I would not have the stamina to get to and from Fazakerley as regularly as required to attend. This should not be held against a patient looking to manage their pain. The knowledge that 3 days a week all day for 6 weeks is too much is positive pain management. Refusal to sign up to scheme has resulted in discharge from Ainsdale Pain ClinicI went to pain clinic and was just told I was being discharged GP care who has little knowledge of fibromyalgia and pain managementLanguage issuesI cannot understand English. I need language support in Cantonese / Chinese whenever I attend the service and read the materials information.My English capacity is not well. I need language support in Cantonese/Chinese to help me attending the service as well as need the leaflets in Chinese version.My first language is Cantonese/Chinese. All along I need language support to use the service and also the leaflets should be in Chinese version.I cannot speak or read English. I must need language support in Cantonese / Chinese when I attend the service and get the leaflets about the service.I cannot speak or read English. I need language supporting Cantonese/ Chinese to help me to access the service as well as to understand the materials information.I can't speak or read English. I need language support in Cantonese / Chinese in assisting me to use the service. I also need to read any materials information in Chinese version.I cannot speak or read English. If I have no language support in Cantonese / Chinese, I definitely am able to attend the service or read the materials information.The service would be useful. However, I need language support in Cantonese/ Chinese if I will use the service in future. I also need the materials information in Chinese because I cannot speak or read English.English is not my first language. I cannot speak or read English. I need language support in Cantonese / Chinese when I attend the appointment and read the materials in writing.I am unable to speak or read English. I need language support in Cantonese / Chinese. Not only interpreter, I also need the leaflets in Chinese version.I definitely need language support in Cantonese / Chinese to assist me to use the service. I also need the leaflets in Chinese version.I cannot speak English and will not to be able to use the service if there is no Cantonese / Chinese interpreter to help me. I need material information in Chinese too.Need Chinese language supportNeed Cantonese interpreter Provide sessions in sheltered housingNeed Chinese language supportLanguage barrier, need Chinese interpreter.Need Cantonese interpreter provided.Provide Cantonese interpreter. Leaflet printed in Chinese.Need Cantonese interpreter Need to provide transport to attend servicesI have mobility problems and would prefer home visit only. Need Cantonese interpreter.Language supportProvide Cantonese Interpreter Come to sheltered housing to give talksI cannot speak English. I need Cantonese interpreter to support me to get through the service. I would like to join a group with Chinese together because I feel more comfortable and safe.I cannot speak English. I need Cantonese interpretation during my appointment. It is better to join the session together with other Chinese. I will feel more safe and easy to go through the treatment.Other CommentsNoI don't think this is a well constructed survey NoPaging back to health exercise, movement back to healthIntermittent, sometimes unpredictable nature of the painWhilst I personally have not been in need of this service my son has and I think it is necessary to be able to cope with patients who are in extreme pain.Neuropathy is particularly difficult to manage, and could have a separate section with medical supervision.Appendix 4: St. Andrews Group DiscussionsDiscussion 1: What services/ experiences have been beneficial to you in coping with your Chronic Pain? Experts Patients ProgrammeWhat was successful? During the course I made contacts and formed long term friendships with others with similar experiences. The fact that the programme was peer led and everyone in the room understood and had experienced chronic pain was really beneficial. Everyone was there to help and support each other and no one was the expert/ professional. The programme gave us useful coping techniques and ideas to help us cope on a day to day basis as well as information on the services available to provide support. Attending this programme gave me the inspiration, confidence, contacts and information I needed to set up a peer support group that brings together and supports anyone with chronic pain. The Hand book given out has been really useful to continuously refer to the information that was covered.Pain Management Clinic at Royal Hospital What was successful? After years of GP’s telling me to go away and not believing me, it was a huge relief the first time I met a pain management specialist who listened to me and said ‘I believe you’. He diagnosed me with Fibromyalgia. Talking it through with a specialist that understood listened and empathised made a huge difference. Medical staff having time to really listen and affirm how I was feeling. Attending this course led to other courses. However these weren’t really beneficial partly as I was the youngest by a long way and felt like I was alone. Chronic Pain Support Group at St AndrewsWhat is successful? It brings together people who understand and have similar experiences. I am able to get things off my chest with people who understandIt’s a safe space where I am not judged It great for sharing advice with othersI no longer feel alone.As a result of being part of the group I experience less pain and feel more positive generally about lifeWe have covered subjects that have been really helpful dealing on a day to day basis including:distraction and coping techniques which have been really usefulRelaxations exercises and breathing techniques VisualisationDiscussion 2: What the pain support group at St Andrews Community Network means to me.It’s a place I feel comfortable to share my feelings and experience with othersSharing and supportPeople who understand me and not judgeA place to sound offSafe placeBeing able to help and encourage othersI’ve built up good friendshipsI experience less pain Now looking forward to the future My experience is validatedNo longer feeling alone, others out there experience and cope with similar pain.Very beneficialInfo on how to cope physically – what aids and gadgets can helpNo one says ‘you shouldn’t feel like this’Tips and tool to distract from painPeople on my wave lengthGreat to talk about anything and not be judgedSharing practical help and advice from people who know what it’s like Helps me to help othersSharing tips and adviceFree coffee and biccies!! Services that would be beneficial for sufferers of Chronic PainServices neededWhen / how oftenWhereBy WhomExperts patients programme or similarA 6 week one off programme with yearly reunion/ refreshersCity wide, run locally and rotated around venues to ensure accessible to allPeer led but training provided through NHSHydrotherapy. Pools accessible within the community Accessible to book in/self-referral / drop in if possibleAcross the city – Possibly through lifestyles gymsNHS / LCCPeer support groupsBi weekly meetings both daytimes and evenings to enable as many people as possible to attendRun in community Peer led but supported by NHS and training provided Social media ie- Forums, Facebook support groupsRegularly updated with tips, info and adviceOnlinePeer led (private groups)OT Led Skills trainingOne off 6 week programme with ongoing refreshersCity wide, run locally and rotated around venues to ensure accessible to allNHSRelaxation sessions with music/ led meditation/ mindfulness sessions Regular sessions available. One off trail through Peer Support groups to learn techniqueLocally Expert led Talks on services and equipment available. One off with updates when necessaryThrough peer support groups/ social mediaOccupational Therapy team Training for GP’s Nurses and other medical professional on understanding and empathising with Chronic Pain sufferersOne off with ongoing refreshersNation wideSpecialistsSpecialist counselling/ psychologistsProgramme for as long as needed and when needed for specific patients Locally Councillors / psychologistsGentle Exercise programme i.e. Yoga, Pilates, Thai Chi Regular sessions available. One off trial through Peer Support groups to learn techniqueLocally Personal Goal Setting sessionsProgramme to identify goal and ongoing support LocallyTable 17: services for pain sufferersAppendix 5: Breakdown of people engagedWho you engaged withWhenWhereEngagement method usedBME community at risk of isolationWednesday 18th MarchLA Health & Wellbeing ClinicL15 4LLProvision of a half day 1-2-1 Pain drop in information/ management session through Holistic therapies Community at risk of isolationWednesday 25th MarchLA Health & Wellbeing Clinic, L15 4LLProvision of a half day 1-2-1 Pain drop in information/ management sessions through Holistic therapiesMixed Community Target of InterestSaturday 21st MarchLA Health & Wellbeing Clinic + L’Espace FlavoursL15 4LLCommunity Health Empowerment Open Day Education and empowerment on Orthopaedic and Rheumatology conditions and group discussion and feedback on available services and proposed optionsBME Community of Faith at Pentecost Baptist Church KensingtonSunday 22nd MarchPentecost Baptist Church SpekeGroup Education and empowerment on the causes of Pain/ awareness on NHS community services. DiscussionsBME Community of Faith at Pentecost Baptist Church Kensington Sunday 29th MarchPentecost Baptist Church KensingtonGroup Education and empowerment on the causes of Pain/ awareness on NHS community services.Questionnaires completed/ case study interviewTable 17: who was engagedWho you engaged withWhenWhereEngagement method used11 patients attending Pain Clinics. Of these, 6 patients are using or have previously used NHS pain services provided by The Royal Liverpool and Broadgreen Hospital, 1 patient is using or has used NHS pain services provided by The Walton Centre, 1 patient has used non NHS services to manage their pain and 5 patients have not used any pain services but may do in the future.Monday 9th March to Friday 27th March 2015Royal and Broadgreen Pain ClinicsFace to Face Interviews with Structured Questionnaire80 respondents from ‘communities of interest’, ‘members of the public’ and ‘existing service users’9th March to 27th MarchOnlineSubjects completed the online survey toolChronic Pain Group members23/03/2015St Andrews Community Network Consultation Session including individual story collecting and group discussionChronic Pain Group March 2015Facebook PageInformation given and feedback requested via questionnaireChronic Pain Group23-31st March Facebook PageWrite up of consultation session provided and feedback requestedChronic pain group members23-31st MarchSt Andrews Community NetworkOne to one interviews with members who missed consultationChronic Pain Group9- 12th AprilFacebook PageDraft report uploaded to Facebook for final commentsVulnerable older people9th to 20th March 2015Poppy Centre Social ClubGroup discussion to explain the activity then One to one discussions & form completion25 service users11 to 27 March 2015Service users home addressesFace to face interviews8-12 people living with HIVMarch 2015Sahir HouseFocus group to develop semi structured interviews12 People living with HIV and 1 support workerMarch 2015Sahir HouseIn depth, semi structured interviewsAppendix 6 A note on the Statistics used in the Pain Management Services Consolidation ReportSeven independent engagement exercises were used to obtain opinions about the preferred options for the future of pain management services in Liverpool. Merging these 7sets of findings into one consolidated report presented a number of methodological challenges. This note is designed to provide the reader with the nature of these challenges and potential implications for the accuracy of the statistics contained therein. These challenges were as follows:Representativeness of the Sample to the Population of Pain Management Service UsersOne fundamental question is how representative is the sample of respondents, who were interviewed as part of the engagement exercise, of the total population of service users. Without a detailed statistical profile of service users it is impossible to say. However, by sampling from a wide range of different groups, and arriving at a broad consensus, then it is reasonable to assume the results provide an accurate estimate of user opinion. For some groups that have been narrowly defined, such as older Chinese people we can be much more certain that we know how these groups feel. However we have no way of knowing what proportion they make up of the total sampling population and therefore we have no way of weighting their involvement to their ‘correct proportionality’.This is in contrast to the online survey, Age Concern and Voice of Nations research which covers a much broader category of respondent and it is entirely possible respondents could have been included in one or more groups. Again we have no way of knowing how relevant these groups are to the total population of service usersThere is also the issue of service users and non-service users to consider and these were not identified as one of the analysis variables. Both service users and non-users were merged in some of the analysis.Actual Statistics AvailableGiven the challenges faced by the different groups in administering the questionnaire there was considerable variation in the standard of statistics produced. Praxis used a statistical survey analysis package to generate statistics about one group of respondents i.e. service users. No other engagement exercise (with the exception of the online survey) appeared to use any form of automatic analysis – they did manual analysis. As a consequence the standard of analysis was, understandably, not as comprehensive or as detailed as those using an electronic process. Very often the base statistics on which percentages were calculated was missing and therefore there was no way of knowing who or how many people answered the question. Subsets of qualifying questions were similarly affected. The main consequence of this is that we had to make a ‘judgement’ or an ‘estimate’ based on incomplete information in order to capture something meaningful from the data. We were cautious in not merging such statistics across different groups because of the danger of producing a statistic that had more credibility than it deserved – a kind of ‘false exactitude’. For example, where we have produced a statistic such as 80%+ it is because we don’t have the actual numbers to be more precise. All we can conclude from the accumulated evidence is that the statistic is almost certainly over 80%.Merging Qualitative and Interpretative Data into the Consolidation ReportThroughout the consolidation report we have retained the wording used by the original author. We adopted this approach because to do otherwise would risk misinterpreting both content and sentiment. For example where an author used the word “unheard” it was obviously used to convey a particular meaning and it would have been dangerous for us to assume what point they were actually intending to communicate. Similarly, where an author has made a generalised suggestion such as “the terminology needs to be appropriate” we cannot provide the evidence that prompted the comment.Suggestion for Future Engagement ExercisesWhere the intention is to merge statistics from different engagement exercises then there should be one consistent methodology for analysing responses to structured questionnaires. Ideally the information output specification should be agreed in advance and one option might be for one organisation to manage data analysis for all organisations involved. Primary statistical data could be returned to the relevant organisations for them to interpret and add their own unique insights. ................
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