Extracts from the narrative accounts of the pain experience for each of our groups of interest (fibromyalgia, older adults in care homes and people awaiting elective orthopaedic surgery) are presented below. Additional references to the literature are combined with these accounts where appropriate to add explanatory depth. The narrative accounts are meant to share aspects of experiences as described, whilst recognising that not everyone’s experience was the same and highlight some of these differences.
Understanding the pain experience for people with fibromyalgia
Eight people living with fibromyalgia and four professionals working in musculoskeletal services were included in our PPI discussions. The professionals were a GP, a trustee of a fibromyalgia advocacy charity and musculoskeletal/pain clinic specialists.
Fibromyalgia is a long-term condition, where pain is felt all over the body and is thought to be neural in origin alongside disordered sensory processing . Several pathogenetic reasons are accepted (18–20),including ‘life changes’ particularly gynaecological [21–23], trauma or other forms of stress and vulnerability. The most common experience of fibromyalgia is of persistent musculoskeletal pain with increased fatigue, poor sleep, gastrointestinal symptoms, and cognitive decline (20–26). An estimated 1.8–2.9 million people are affected in the UK .
Key themes are presented below along with relevant information from the literature review.
Living with pain
People living with fibromyalgia describe their experiences of pain as “exhausting” and “all-consuming”; the illness and its associated symptoms affect all aspects of their lives. People feel excluded or cut off from normal life because of unpredictable fluctuations in their health. Levels of pain make it challenging to maintain regular employment and social relationships. This leaves people feeling isolated at home and makes the days hard to fill; hobbies can be difficult to pursue because of symptoms including joint pain and ‘brain fog’.
Pain is challenging to communicate, and other people cannot understand how it feels. Pain is both invisible and subjective and it is perceived that other people often underestimate the severity and impact of pain. Friends, colleagues, and extended family often only see people with fibromyalgia when they are well and therefore appear not to believe them when they try to express how unwell they sometimes feel. The condition is very individualised and there is a wide spectrum in terms of severity of debilitation.
Other people with fibromyalgia can be a great source of support and validation. Peer support groups and charities play a key role in supporting wellbeing and fill some gaps left by the healthcare system. It can be upsetting to hear about others who are able to engage in daily activities– for example, managing to work full-time. Newly diagnosed people can be confronted with seemingly contradictory advice as well as stories of trauma which are not always constructive. To reinforce this, healthcare professionals have been observed to characterise people with fibromyalgia in having a profile of complaining (27) or describing people as wanting to be ill (28).
There is a paradox around diagnosis. Diagnosis only happens by excluding other possible causes and in some cases, this can take several years. Getting a diagnosis is dependent on the willingness of health professionals to investigate symptoms as well as individuals’ inclination to pursue multiple, often frustrating, and fruitless conversations, tests and treatments. Many people give up during this process and fall out of the healthcare system, meaning that they are left without answers and miss out on opportunities for support. Those people who eventually do get a diagnosis may feel some temporary relief, but diagnosis also brings with it a realisation about the many assumptions and stigmas related to fibromyalgia. This includes contentions about whether fibromyalgia is “real”, which many people say they are regularly confronted with. Some people feel that the “label” of fibromyalgia has prevented them from being taken seriously when complaining of being in pain. They feel that medical professionals have labelled them as hypochondriacs or assume that they are mentally ill, resulting in a failure to get other health problems (unrelated to fibromyalgia) properly diagnosed.
Lack of control
Pain can be episodic and unpredictable. When pain flares up it can take weeks to subside. Consequently, people with fibromyalgia described living moment-to-moment out of necessity rather than choice. Most people said it was impossible to plan and this made it hard to commit to anything. Knowing that there is no treatment or cure, and no end to the pain feels exhausting, depressing and at times some people feel suicidal. They want answers and explanations and are anxiously seeking ways to alleviate their pain. This can include medical, non-medical and ‘alternative’ methods. There are no specific evidenced treatments that have been shown to be effective for all. Some people follow current research outputs, but this can provide false hopes and over time can be disheartening. Those who have suffered a long time with fibromyalgia are stoic and resigned to their adjusted lifestyle – they feel they have no choice but to “crack on”. This is not an easy position, instead it is one of reluctant acceptance.
Living with fibromyalgia means that people must prioritise every task and carefully manage their energy expenditure. Employment often takes priority because of financial needs, meaning that often leisure or personal activities get sacrificed. Musculoskeletal pain limits options when it comes to the types of work people can do. Pacing helps but it’s not enough to enable people to live “normally”. Complete inactivity and too much activity are both problematic but maintaining the “right” degree of activity can be a very difficult balance to find (activity can make you feel worse before you feel better and therefore tends to be avoided). Many people with fibromyalgia resent hearing that they need to ‘experiment’ to find the right level of activity because doing so can be exhausting and demoralising. Exercise is also a sensitive subject because of negative experiences people have had with “graded exercise”. Physical activity based pain management strategies should be considered on patient preference  as well as integrative conversations around motivations and barriers to exercise and some activities such as Yoga  and Tai-Chi [30, 31] have been shown to be effective for pain management.
Access to services
People with fibromyalgia do not feel that they fit anywhere in the current healthcare system; appropriate, specialist pathways do not exist. Fibromyalgia pain is complex and multifaceted, yet the primary care system is only set up to address symptoms in isolation. One person described having to play “top trumps” with symptoms when visiting the doctor, selecting the most problematic or the ‘most interesting’ symptom to share. Time-limited medical appointments are insufficient for professionals to provide a person-centred, holistic response. The trial-and-error nature of the medical approach leaves people feeling exasperated and unheard; many have been referred and forth between primary care and rheumatology. They either disengage altogether or develop a poor opinion of medics. This sours the future therapeutic relationships and makes them feel mistrustful of any support that is later offered. There seems to be a postcode lottery at play: geographical variation in local service availability e.g. social prescribing, community organisations.
The use of pain clinics reduces clinical needs of patients  and from a patient perspective, there is a higher acceptability of non-pharmacological interventions (33), despite similar levels of effectiveness with pharmaceutical interventions (34). Ashe and colleagues  conducted a qualitative study into patient experiences of living with and treatment experiences of fibromyalgia with patients interviewed liking the interdisciplinary nature of pain clinics and helping them to “engage in a nurturing therapeutic relationship...creating a fibro-family.” This provides an example of the impact of an ‘expert patient’ where individual self-management of pain might be more effective, especially when supported by peers [24, 31, 35–37].
People with fibromyalgia can experience a lack of understanding and acceptance from the medical community. GPs can vary in their attitudes towards  and knowledge about fibromyalgia and it is common for people with fibromyalgia to move GP surgeries to find someone more supportive. It is difficult for people with pain to travel because mobility can be very limited, but existing services are often beyond the comfortable range of travel. This lack of understanding from medical professionals and general public may make symptoms worse [31, 35] and has left people with fibromyalgia feeling stigmatised . There is a tendency towards pharmacological treatment and variable access to holistic pain support .
Some people with fibromyalgia have concerns about the use of pain medications, particularly side effects and possible addiction and some professionals share these concerns. Avoidance of and/or over-reliance on pain medication is a concern for some patients along with differing perspectives towards physical activity and other self-management strategies . Out of desperation for pain relief some people have spent vast amounts of their (already limited) income with little guidance or support from medical professionals. Many have benefited from some form of psychological or cognitive therapy. However, they often need multiple opportunities or offers to engage with therapy so that they can benefit when they are ready for it.
Impact of COVID-19
Initially COVID-19 provided some security and relief through shielding; people with fibromyalgia welcomed that everyone was in the same boat. Unfortunately, the consequences of longer waiting lists and limited face-to-face contact with healthcare professionals means that they are feeling more uncertain and isolated. Going out now makes people feel anxious because they worry about risk of COVID-19 transmission..
Changes to benefits assessments following COVID-19, e.g., eligibility for higher rate personal independence payments have had a particularly negative impact. Some people feel that they effectively have to behave like a “one-person campaign” advocating for themselves within both the benefits and healthcare systems which is draining and demoralising.
Differences in experiences by demographic
Those people who do not speak English well may be disproportionately affected by the issues presented above, as they may lack the health literacy and/or language skills to advocate and self-manage. Professionals report that medical terminology about pain does not translate across well to different languages or cultures. This makes it very difficult to access relatable information and support, and/or to digest advice about self-management.
It seems that males tend to under-report pain and symptoms of fibromyalgia and might also be less likely to pursue a diagnosis. This means that many men might not be accessing support. On the other hand, many females with fibromyalgia feel that they are not taken seriously. They believe that their symptoms are unfairly blamed on hormones or poor mental health. Professionals know that links exist to these aspects of health, but they are not well understood. Fibromyalgia diagnosis is nearly 4 times more prevalent in females than males (41) with some reticence in medical professionals to diagnose males with fibromyalgia reported much to the frustration of patients .
Understanding pain experienced by elective orthopaedic patients
Seven people awaiting elective orthopaedic surgery agreed to discuss their pain experiences plus two professionals (a nurse and an occupational therapist).
The number of patients who are waiting for elective surgery has increased dramatically during the pandemic and, the longer patients live with pain there is a risk of reduced functioning, and decreased mobility through muscle wasting . Waiting times are the biggest cause of dissatisfaction within the NHS [44, 45]. Long waiting lists for elective surgery defined as greater than the targeted 18 weeks for treatment  has been associated with worse health perceptions , deterioration in quality of life and raised anxiety [48, 49] as well prolonging sick leave[48, 50] and loss of income [48, 51]. International agencies (The European Hip Society and Knee Associates) and National Groups (Versus Arthritis) have emphasised the need to assess impact of delaying hip and knee arthroplasty and prioritise waiting lists [52,–54]
Beliefs about elective surgery and pain
People we spoke to were accepting of and resigned to the long wait for surgery. This might be because they are used to seeing media reports about long waiting times or know someone else who has waited several years for surgery and/or because they understand that waiting times are significantly affected by COVID-19. Despite general fortitude about waiting times, people would find it useful to have more information about how long they might expect to wait, or a general idea of their position in the “queue”. Most people waiting for elective surgery also feel resigned to having pain. This is because pain is often normalised as an inevitable aspect of waiting for surgery and they therefore regard it as something to be tolerated.
Impact of pain
Despite stoicism and pain tolerance, it can have a major impact on peoples’ daily lives. For several people, their pain causes mobility problems which have resulted in them having to stop work. Depending on the type of employment they had, this varies from being signed off on long-term sickness absence to taking voluntary redundancy. Whilst pain is the main reason for stopping work, depression might also be a contributing factor for some. It’s not easy to tell whether this depression is directly related to the pain or is something separate.
For most people, pain is variable and can range in severity on different days. Whilst this is largely tolerable, it does mean that they need sufficient knowledge about how to effectively manage their pain on any given day. For some people, pain causes disruption to sleep which also affects quality of life.
Communication with healthcare professionals
People describe difficulties accessing their GP as well as physiotherapists and other professionals. Some would have liked to see a health professional for a face-to-face appointment, and they have struggled with the lack of access to professionals during the pandemic. Seeing professionals one to one basis is reassuring, and generic mailings or information is no substitute for this. In addition, receiving a ‘keeping-in-touch’ information mailing is very welcome, mostly because people appreciate feelingremembered by the health service. Patients welcome access to more information about their situation including what to expect and when.
Self-management of pain
Most people already have pain management strategies in place, which for some tends towards medication. Those who have had pain for a long time, feel that they have been “through it all before” with their GP and have exhausted any possible options for reducing their pain. Pain medication has side effects which can be significant. Information is power – letting people know early in their wait what they can do to manage their pain would be best. Most people are very willing to be proactive in managing their pain and welcome any information or advice that is offered. More information would be particularly welcome about non-pharmacological self-management strategies including exercise and the use of heat and ice. People want to know not just what to do but why it is going to be useful. Generic information is acceptable (ie. from the internet) but many would prefer that it is personalised, to give confidence that it is “right for me”.
Exercise and/or movement are among the most used self-management strategies for pain. Some patients take the initiative and experiment to work out which physical activities work for them. Others would welcome more information about what type of exercise is right and safe to do and some further people would like to be supervised while they exercise. Regardless of their level of confidence, everyone would welcome more reassurance and guidance about how to use exercise and activity in the management of their pain.
Differences in experiences by demographic
The patient's perspective of being on long waiting lists for elective surgery has received relatively little attention . But the National Voices  whitepaper on improving our understanding of the experience of waiting for elective care included an extensive literature review to understand factors that impact patients' experiences. Individuals’ experiences get worse over time with pain affecting sleep or activities of daily living, particularly with older patients. The British Orthopaedic Association reported that between April and September 2020 there were 212,000 (73%) fewer operations during the first surge of the pandemic, but also that many people avoided healthcare settings due to perceived risk of infection of COVID-19, 
Understanding pain of older residents in care homes
Six individual discussions took place with professionals working with older adults in care homes. This included a deputy care home manager, a Care Home pharmacist, and a GP with specialist interest in care homes. These professionals shared rich insights into the management of pain in care homes but were not able to report lived experiences. During the pandemic it has become more difficult to engage people working in care homes or residents and their family carers.
Older residents have difficulties expressing and communicating pain and self- reporting pain with residential care populations is a key challenge for the sector. Residents are dependent on the professionals and family/friends around them to understand their experience by virtue of their behaviours and there are often subtle signs of pain (e.g. body language, facial expressions, sounds, agitation, food and fluid intake, signs of movement distress and restlessness at night) that make it evident that they are not comfortable. Reports of care staff feeling “traumatised” and exhausted since the pandemic and lockdown, has resulted in an overall drop-in activity but has also exacerbated the previously endemic problem of ‘normalised acceptance’ of pain. Residents have suffered through prolonged periods of isolation and heightened confusion caused by disruption to normal routines and carers wearing personal protective equipment, but some are experiencing ‘unbearable pain’ that they can’t express, or which isn’t fully managed within their care plan.
The prevalence of pain in older people in the community is 25–76% [57–60] whereas in residential care it is assumed to be far greater at 62–93% of the population [61–64]. Pain is a major burden of illness experienced by older people in care homes but it is unclear whether pain is based on disease processes or resulting from the sedentary lifestyle experienced within these institutions . Older adults in care homes are prone to physical inactivity and sedentary behaviour  and older adults and the care workforce often collude in promoting inactivity  with, for example, ‘wandering’ activity perceived as unsafe and disruptive . There have been several large scale trials associated with changing practices to improve physical activity in Care Homes, with mixed success, more often reporting some of the barriers to changing practices that are intended to improve quality of life [69, 70].
Assessing pain experience
Some professionals suggest that it is common for older residents to understate or diminish their pain. Stoicism and/or beliefs that pain is a normal and inevitable consequence of ageing appears to result in many older residents not mentioning it unless explicitly prompted. Older people frequently dismiss musculoskeletal pain as “just a niggle” or nothing more than what they “usually” experience. When staff hear about pain very frequently, they can become desensitised to it and/or the issue can become normalised for that patient. This makes it challenging for staff to assess, and for the patient to communicate, when changes in their pain occur (e.g., escalation of existing pain or new pain).
Professionals highlighted the importance of understanding the emotional component of pain. Identifying triggers and sources of pain and distress as key – but not always simple. Professionals such as doctors, nurses, pharmacist, dentists, physiotherapists who are more likely to address the pain, are heavily reliant on the observations of the carers which can be a subjective assessment of the pain by the observer. Significant time can be necessary to investigate and understand an individual’s pain but many care professionals and visiting health professionals lack adequate time to undertake in-depth assessment or consultations. Interactions with external medical professionals (GP, district nurses) are particularly brief and often (currently) virtual, making it even more challenging to assess and identify pain-related issues[71–73].
Older adults can hold attitudes, beliefs and expectations affecting pain reporting  with stoicism particularly prevalent in the care home population. This stoicism is linked to under-reporting of pain  with numerous studies evidencing age related differences in stoicism, pain reporting and chronic pain experience [76–79] With dementia the neuropathological changes disrupt neural pain networks  especially those involved in pain perception, and there is some evidence that people with dementia fail to recognise and evaluate their own pain [81, 82] making treatment all the more complex .
Communicating pain experience
The ability to communicate distress depends on the degree of cognitive, sensory and/or speech impairment an older person experiences, for example people with dementia can sometimes display aggression or agitation which may be because pain has worsened, is not taken seriously or sufficiently investigated. Recent work to understand facial expression of pain[84, 85] using the facial action coding system  rather than self-reported outcome measures, has been successful with facial responses in dementia patients  leading to non-verbal cues [88, 89].
Individual differences in pain tolerance, beliefs about pain and preferences for its management are not obviously reflected in current management strategies with an apparent emphasis on pharmaceutical management. Residents often consider their role in pain self-management to be medication adherence but with little knowledge or critical reflection on what they are taking and why.. Patients have limited, if any, access to other supportive therapies including exercise-based rehabilitation, physiotherapy and occupational therapy is generally limited to the provision of equipment for safety purposes.
Lack of agency and access to services
Older care home residents have very little agency when it comes to their living situation, and this extends to how their pain is managed. Older people spend large amounts of time sedentary and/or in bed with muscle wastage, nerve compression, postural issues and stiffness all potentially contributing to increased pain. Mobilisation is an important aspect of pain management, but older people are not always able to initiate movement themselves. Care home protocols prioritise safety and the minimisation of falls risks, meaning that residents are moved infrequently and those who can stand, transfer or walk with support are sometimes discouraged from doing so (e.g. by hoisting). Professionals indicated high levels of depression in care home residents, partly related to boredom, neglect and/or lack of stimulation. Limited (nil, in many cases) engagement from family members can be one of the contributory factors to depression and psychosomatic pain for many older people, highlighting the social aspect of care.
Long service waiting times on referrals can have profound adverse effects for care in terms of delayed identification of the issues. Heat relief, cold compresses, distraction therapies, mobilising or at least increased repositioning can all be useful non-pharmaceutical strategies but are not used widely enough.
Complexity of pain medication for older residents
Physical and mental health co-morbidities for older people often manifest into polypharmacy . Inappropriate or high dose pain relief medication(s) adds to the polypharmacy which can potentially aggravate kidney damage, oversedation and confusion, constipation, rebound pain and increase risks of falls and fractures. Oversedation or withdrawal from pain medication can exhibit symptoms which can be misinterpreted (e.g. as psychiatric symptoms, with possibly more medication being prescribed) and people in residential care are more susceptible to side-effects from polypharmacy, especially delirium .Professionals described a “sundown syndrome” for residents with dementia in which pain becomes worse in the evening and night-time causing increased aggression, restlessness and sleep disturbances and cognitive impairment potentially resulting in undermedication [93, 94]. This can lead to hypnotic prescribing whereby hypnotics are prescribed alongside strong opiates. Such medication can cause psychiatric symptoms and/or a hangover effect the next morning with increased risk of falls.
Older people discharged into care straight from acute hospital settings can tend to be prescribed strong pain relief. This is not intended to be a permanent dosage but intentions to reduce this once under primary care management are often thwarted by a lack of GP time to conduct proper follow ups and medication reviews, inadequate pain care planning resident or family misperceptions about pain medication (i.e. stronger = better). This results in residents remaining on strong pain relief with significant side effects where pain could be reasonably managed through less intrusive medications and other strategies. Lack of understanding and demands for medication by the carers and the family often puts pressure on the professional making it difficult to reduce the inappropriate prescribing.
Lack of pain care planning and documentation
Pain management in care homes is largely reactive, but it could be more effective if tackled pre-emptively.
Older people in care homes particularly with memory loss or dementia need regular objective pain assessments and documentation to aid holistic medication review and care. It is difficult for professionals to monitor what is working/not working in terms of pain management because it is usually poorly documented. Professionals suggest that proper pain management care plans, with specific documentation for adoption in care homes, clear recommendations and escalation plans are warranted. Digital care plans and/or quick access to the correct documents may further help professionals. Better training and consistent use of pain assessment tools may also be warranted.
Differences by demographic
There are clear sociodemographic influences on pain too with examples of military veterans who are considered to have a higher pain tolerance compared to the general population (96). There also appears to be some influence of spiritual or religious beliefs having positive outcomes for pain [96, 97]. Studies show that women have a higher prevalence of pain [98, 99].
Effects of Covid 19
There have been enhanced measures to protect and isolate the very old and vulnerable from infection  but inevitably the specific needs of individuals in relation to under assessment and reduced access to specialist care during the COVID19 pandemic .
Findings from the Synthesis of pain experiences
Two members of the team collated and identified cross-cutting statements from the three PPI narratives, grouped as i) statements about pain experiences ii) service improvement priorities and iii) future research priorities. The three lists of statements are included in Appendix A.
The nominal group method  was conducted on-line with participants, using an on-line polling tool that enabled individuals to prioritise the statements. Twelve participants attended – including professional experts and people with lived experience from across our three identified subgroups (Fibromyalgia, Care Home residents and waiting elective orthopaedic patients). Thetatements were discussed and some minor refinements made to the language based on feedback from participants. Statements were then sorted and combined into a list of priority areas.
The Top Five Final statements, prioritised by participants were as follows;
Pain experience is difficult to communicate to professionals and others
Pain is exhausting, frustrating and socially limiting
Pain results in exclusion from usual daily activities e.g. regular employment
Pain makes you resigned to being/feeling unwell and may be constant and enduring
Pain is poorly understood by some health professionals, and this affects trust
Everyone with pain should have an individually tailored care plan that includes supported self-management and pain medications
People with pain most want to feel heard and validated by health professionals
Pain is different in intensity for everyone so needs to be properly and continuously assessed
It is necessary to consider lots of different approaches that alleviate or make living with pain easier
Pain should include identifying and addressing emotional needs, triggers and sources of pain
More research is needed to inform professionals’ prioritisation of effective pain management strategies that tailor the care plan to the individual.
Professionals and agencies need guidance on age-appropriate and culturally appropriate opportunities for people to learn to manage pain
Healthcare professionals need evidence-based knowledge and training about the perception of pain medicine
Best practices in pain assessment tools and implementation of continuous assessment is required
Professionals and agencies need guidance on how to communicate about pain