The interpretative process helped to organize the narratives of equity in support needs into three interrelated thematic areas of perceived need for equity. These are summarized here as:
(1) Illness symptoms, functional limitations and illness management;
(2) Practical support and social care;
(3) Financial support.
(1) Illness symptoms, functional limitations and illness management
Participants all reported that before becoming ill with CFS/ME they had had an active family, social and productive life as housewives, parents, offspring, friends, students, researchers, professionals, manual or clerical workers. They reported illness-related experiences of a wide range of distressing and debilitating impairments and functional limitations, varying greatly in combination and intensity between participants and over time. Seeking support for managing their health challenges characteristically involved them in lengthy and problematic processes, reflected in the sub-themes which follow, of: gaining recognition of their symptoms, impairments and limitations as illness; achieving a diagnosis; and gaining appropriate health services support to manage their illness.
Experienced symptoms and impairments commonly included severe fatigue experienced as highly disproportionate to the activities preceding them, not relieved by rest, usually accompanied by cognitive impairments such as memory and concentration difficulties. Pain was another major and common symptom, as well as sleep problems, such as overwhelming drowsiness alternating with frantic sleeplessness. Other distressing symptoms reported by some participants were: gastro-intestinal problems,, sensory and chemical hypersensitivities,, tachycardia, dizziness on moving, and frequent infections.
Experienced limitations on activities were also seen to vary greatly between individuals and between differing periods of the same individuals' experience with this condition. These ranged from being able to maintain activities of daily living, employment and communication at the cost of much effort and restriction in other activities, to major limitations, being wheel-chair-, house- or bed-bound with multiple hypersensitivities and pain.
Participants revealed how they were facing distinctive illness-related barriers, in gaining recognition of their illness. To manage this complex illness required people to gain access to appropriate health expertise which, in turn, could affect their likelihood of gaining family and wider social support . However, their encounters with health professionals were reported as often problematic in ways which both delayed or reduced access to such support and greatly exacerbated emotional pressures.
There were reiterated experiences of not being listened to by healthcare practitioners, as one young Asian woman commented:
'...actually what she said to me.' I'm the doctor I know best....'. You see, when they say that to you, when they are not really listening to you, that's frustrating' (P30 White-Asian female, educated to university level)
This often posed particular problems in the earliest stages of the condition. Nearly all participants, from both white and non-White groups spoke of their illness not being taken seriously by GPs, with individual symptoms being dismissed, perhaps as 'a virus' or as a common cold. Many participants experienced this as a profound lack of acknowledgement:
'(...). when I was telling them it was like this (...). They said. oh no, just shhh, we'll give you anti depressants so you can just go, go be quiet somewhere and it's just like, they weren't listening' (P34 Chinese-White female college student).
This was echoed by most non-White participants as in:
'I don't think I was treated seriously, they didn't take on board what I was saying and my symptoms'(P29 White-Black Caribbean female, educated to secondary school level).
Such difficulties have a particularly marked impact on equity, as GPs are frequently required to act as gatekeepers to other health services, or to social resources, leading to treatment delays. As one person commented:
'She was often very reluctant to provide a formal letter and I always dreaded having to go and see her when I needed another letter because I felt I was always having to justify my illness and justify myself and I felt that she thought I was making an excuse.' (P2 White British female, educated to university level).
Such recognition was also central to gaining most forms of assistance from health or social care needed to enable them to participate in both public and private social life, including work, education, leisure and family life. While clearly an issue for the majority of participants challenging such lack of recognition could be especially difficult for people from ethnic minority groups in which such illnesses were less commonly identified as self-recognition and belief of the symptoms and experiences was also problematic.
'I never heard of any black person, or any other ethnic minority who's got this illness (...) I just thought maybe, you know, this is a white middle class illness' (P27 African woman, educated to university level).
This was reflected in participants across all ethnic groups wanting health care practitioners to have the time to help the patient feel 'empowered' (P24), and 'believed' (P1, P34), to increase their sense of inclusion and acknowledgement.
Achieving a diagnosis was seen as the crucial milestone for most participants (P1, P3, P4, P5, P7, P9, P11, P14, P32, P34). Where this led to advice from doctors and other health care professionals with particular knowledge of CFS/ME, this was almost invariably a positive experience. For example, one participant commented on his unusual luck in gaining a prompt GP diagnosis, leading to coordinated care and support from his manager, which allowed him to work part-time within his capabilities and to gain sick leave and retirement as the illness progressed (P32). Most participants, however, found doctors saying they could not help, resulting in their feeling abandoned to fight the problem by themselves:
'I don't think I have seen anybody for about two years now, and I haven't had my medication reviewed properly during that time or any specific help from a doctor since. I've been pretty desperate really, because (...) I want to move forward. (...) a lot of people don't believe me while the GP doesn't seem to believe that these symptoms exist.' (P1 White British female, educated to university level).
Even when bed-bound, participants encountered unsupportive attitudes from health professionals which greatly undermined their chances of wider belief and support:
'I was more or less bed bound for a couple of years, (...)and meanwhile the doctors were telling me there was nothing wrong with me. So I was under pressure from employers, family and everyone else to stop imagining that I was ill, and to get out of bed and get on with my life.'(P9 White British male, educated to university level).
Disagreements over diagnoses and over-attention to psychological symptoms could lead to inappropriate treatments which paradoxically contributed to deterioration in emotional well-being:
' (...)the only stress I'm suffering now is the stress of being ill, you know the frustration of it. I wanted to get back to work; I was anxious about my classes, so the doctor kept putting on my medical certificate chronic anxiety state.' (P20 White British female, educated to university level)
While these participants felt that the health care system should explore useful interventions, they more often encountered oppositional health services responses. Some therefore decided to use a private or alternative health services as a way of getting diagnosis or help, often exacerbating stress, uncertainty and financial pressures:
'I was lying on the floor in pain a lot of the time and all I had was the doctor just giving me pain killers. (...)I said I wasn't suffering from stress. I am stressed because you're not doing anything about it (....). Then I had some private medical insurance. (...I saw so many different people and I saw this osteopath that I paid privately. He thought I had ME so I paid privately to go and see Dr ** (NHS consultant) (...) so I could get a diagnosis.' (P16 White British female, educated to university level).
Illness management. Participants suffered from lack of control over choices of treatment for managing their illness, which they saw as due to both lack of resources in the National Health and social systems and relative lack of recognition or value given to their own experience with the illness. Where participants' and GPs' views differed on appropriate treatment, typically around graded exercises or antidepressants, a refusal to take antidepressant medication was often interpreted by the GP as a refusal of treatment. Participants desperate for relief of feelings of pain or illness reported finding treatments such as massage, osteopathy, dietary advice and acupuncture helpful, and it caused ongoing frustration that such interventions were not funded by either the NHS or by private health insurance for CFS/ME (P12, P16, P21 P27, P28, P29, P34). Citations show these as especially likely to be mentioned by participants from ethnic minorities.
People who had hospital care described their need for designated wards for CFS/ME, with environments adapted to their needs, as in keeping light and noise levels low (P10). Some participants highlighted the limited time for consultations as a barrier to appropriate care provision and another reason for seeking support outside the NHS. For example, one Asian woman (P30) explained that her NHS acupuncturist limited treatment to only three needles, whilst the private service she eventually attended but could only afford for a limited time allowed the acupuncturist time for enough needles for pain relief and to discuss her situation.
People from minority ethnic backgrounds reported particular difficulties in accessing health and social care support systems, experiencing more stigmatisation and stereotyped responses that did not fit their health needs. For example a Caribbean woman said she was not taken seriously because of her ethnicity, with all symptoms interpreted as psychiatric in origin;
'They sent a psychiatrist round to ask me if I was having problems and you've got so many children and you're separated from your husband and I was saying no, I've been separated from my husband for years why would it just come now' (P29 White-Black Caribbean female, educated to secondary school level).
They expressed a need for workers from the same culture who could relate to their background. An African woman (P27) observed that 'pain in Black people is stigmatised and you see more black people in mental health than other people...' going on to report being given injections roughly, within a system where attitudes were often unsympathetic to both her illness and her ethnic background.
Some non-White participants therefore experienced ethnic group-specific lack of understanding of their condition and situation in trying to access a diagnosis. Just as the quality of social relationships was seen to be closely bound up with processes of accessing health services, access to social care and support was seen as vital for managing their lives and for practical support.
(2) Practical support and social care
In relation to the theme of practical support and social care, sub-themes detailed the importance participants' attached to securing: practical support to avoid escalating the illness, and associated financial problems; social care given and received in gaining control over their lives; and so to secure social and cultural inclusion to optimise wellbeing within the limits of their illness.
Practical support for personal care, family roles, independent living and support for carers was invariably seen as extremely important for people with moderate to severe illness. Many participants described needing help with all personal and domestic tasks: with moving around the house, getting out of bed and from chairs, washing and dressing, feeding and self-care, running a home, including meals preparation, shopping or cleaning (P5, P6, P9, P11, P12, P35 P10, P27), and how these intensified with childcare:
'When you have children it's not just the meals, it's the homework, it's the washing and ironing, you know, it's the full Monty.' (P16 White British female, educated to university level).
One person described teaching her five year old daughter to phone for help and to make herself a drink in case she found her mother unable to move. She commented that in appointments GPs never asked her about how the home was being run (P26). Participants described other family members having to cover such family responsibilities, as with a young mother, a single parent, whose own mother covered this role (P35), whose ten year old child was doing the housework (P16) and, refused practical home social care support even when, as with a Chinese participant her older mother-carer, became ill, this led to an eleven year old friend cooking and doing housework for both of them (P21).
While participants were aware of the need for a balanced diet to maximise their limited health and energy, several described having to go without food when they were physically unable to prepare it:
'I needed complete rest and somebody to do the shopping, to do the cooking and (...) sometimes I needed weight builders' food because I didn't even have the energy to hold a fork so I needed complete care really.' (P9 White British male, educated to university level).
Social care, both given and receivedcould be seen as an issue of paramount importance for most participants' life priorities which often included sustaining their own roles as family caregivers. A participant who was mostly bedbound with hypersensitivities to sound, light, touch and chemical products said that, to support an independent life, she would need trained carers and highly specific home adaptations (P35). These required improved access to social care.
They highlighted how lack of access to social care and practical support was exacerbated when health practitioners would not recognise their illness, making a profound impact on their ability to carry out their family caregiving roles, particularly as parents. Participants described how 'most people with CFS/ME don't get social care' raising serious questions about how people might go on and manage their lives with the debilitating symptoms they reported. Nonetheless, until a diagnosis was gained, social services often could not even assess their needs (P5). Without social care support, often partners, parents and sometimes children had to become carers. One, not unusual, example was described:
'On my bad days I didn't have any help. I've got a four and a half year old and a six year old (who) couldn't have gone to school. She would have been here on her own with me. (...) ...I couldn't do anything physical at all. (...) I had to tell her how to programme the phone in case I collapse.' (P3 White British female, educated to university level).
Inevitably minimal access to other forms of support also had an impact on carers, as P1 explained:
'My husband has been ill at times and I'm sure it's just the stress because he never stops, he has to do all the shopping, (...). He has to do everything. Without him I would just never survive on my own. We paid for a cleaner to come in for three hours on a Wednesday morning (...) as my husband has to work and we get no social help or no disabled badges or anything.' (P1 White British female, educated to university level).
A participant whose mother had given up work to care for her described the severe strain on family life in providing care for two adult offspring with CFS/ME and her grandchildren (P8). A male participant recounted the collapse of his relationship with his partner, under such strain (P13).
Maintaining social and cultural inclusion. Participants' daily living was therefore greatly affected, both directly and indirectly, by CFS/ME, from inequities in access to health and, relatedly, social support and social inclusion. Participants recognised that CFS/ME was a chronic condition, which could have a catastrophic impact on their lives, with no ready 'cures'. However, even if treatments were not available, they still needed services to help reduce the impact of the condition, to make life more bearable and to reduce exclusion:
'(...) if somebody cannot use their legs properly you should give them a wheelchair' (P20 White British female, educated to university level).
Instead many underlined their heightened experiences of social isolation and dependency.
'I'm house trapped and my husband does most things' (P15) linking these to extensive needs for practical support: 'I couldn't lift a cup or get downstairs by myself. I couldn't get out of the house.' (P6, White British, educated to secondary school level). Such perceptions of exclusion were heightened for some non-White participants:
'I know if I happened to be a white person the story will be different. They'd probably be more sympathetic, yes it does affect whether you're black or white, Asian' (P27 African woman, educated to university level).
Where people could not find alternative ways of getting support for practical tasks, the home environment, where they had to spend most of their time, becoming, not their refuge, but a further source of stressful experiences of deteriorating well-being. Such issues pointed up further inequities in the financial burden arising from the health and social demands of living with this condition.
(3) Financial support
Financial support was consistently identified as crucial for illness- and life-management, and to maintain education, social relationships and material well-being. Yet all participants described many financial constraints arising in the absence of other forms of support to live with CFS/ME. There were primary consequences of impoverishment, but then secondary consequences for social standing, relationships and future entitlements. Limited incomes imposed hard choices about what money would be spent on, which debts to run up. These are presented in sub-themes concerning: private income, savings and insurance; accessing welfare benefits and; accessing employment.
Private income, savings and insurance. As well as finding their ability to gain income reduced, participants faced additional expenses with CFS/ME. Feeling 'written off' by state health provision, many described paying for relatively expensive treatments to manage pain, or diets to optimise their wellbeing (P23, P34). Some participants had benefited from resources such as medical- or employment-related insurance (P16, P13, P11, P25), some using these to get specialist assessment and diagnosis more speedily. One participant found that private insurance quickly stopped paying for treatments for CFS/ME, arguing that they were not known to be effective (P13). Another refused to pay out on a critical insurance policy when the participant had to give up work through CFS/ME, seemingly just as poorly acknowledged in the private sector. A few participants had managed by living on savings or renting out property, but saw their financial situation drastically reduced by the impact of CFS/ME (P13, P25). For participants affected from school age, their parent(s) may have had to reduce or to stop working altogether to care for them, affecting the whole family's income (P30, P35).
For people with no private insurance or savings to fall back on, and unable to work, the main way forward was to apply for state benefits.
Accessing welfare benefits. Participants described the frustrations of attempting to apply for welfare benefits while affected by CFS/ME.
'I have recently been running around even though I've got problems, because of the DLA [Disabled Living Allowance], to try and get everybody to speak to each other' (P28 female White-black African)
The nature of CFS/ME symptoms, with extreme fatigue, pain and cognitive impairment, meant that complicated forms having to be completed even to start the process, were especially daunting. Where benefits assessments were based on questions about function, people felt acutely that their limitations, which often varied greatly over a time period, could not be adequately represented and recognised.
'the way they ask the questions and (...) when you answer, can you prepare a meal, (...) because you say "occasionally I can" they disregard you straight away.' (P33 White European female, educated to secondary school level).
Many participants described the clear official lack of understanding of the variable nature of the condition, and that despite occasionally being able to carry out certain activities, the overall impact on functioning was severely limiting. One person insisted on an assessing doctor spending several hours with her to appreciate the impact on fatigue and function of carrying out tasks (P10). Participants frequently found the benefits system complicated and confusing, something to 'fight' rather than a source of support. Not being able to predict what they were entitled to, people found out in a hit-and-miss way, making arduous applications for benefits that were then often refused. While some from both White and non-White groups, pursued appeals, with help from welfare rights services (P10, P14, P7, P35, P32, P33, P23, P29, P34, P1, P16), several did not feel well enough to pursue such battles (P5, P9, P30, P29, P3). Many participants, especially from non-White groups, expressed their needs for much more information on entitlement to help focus their applications on attainable benefits (P3, P5, P7, P16, P19, P20, P21, P23, P27, P28, P32, P34, P35). However, most participants saw the inflexibility of such forms as "inappropriate for assessing the level of disability in ME term: they don't give scope to express the worsening of symptoms restricting activities" (P35, White female, educated to university level).
Some described the irony of only being able to appeal and succeed in gaining benefit when they were better. One Chinese woman, advised by welfare rights workers to make claims on the basis of symptoms such as anxiety and depression rather than CFS/ME, saw her diagnosis of CFS/ME as impossible for the system to recognise (P21).
Some participants, unable to claim any benefits, whether through lack of support from benefits staff or their current financial situation, experienced profound effects on their lives, being bereft of resources, and enforced total dependence on family or partner.
'Me never having any income of my own really became a really big issue with me and my partner and that became the stick he beat me with metaphorically (...) and the same with your social standing with your peers (...) if you are not getting sickness benefit you are seen as a sort of a drain.' (P5 White British female, educated to college level).
Where not getting benefit and feeling too unwell to sign on for unemployment benefit, people could then experience a lack of acknowledged civil status and, without being credited for National Insurance payments, worries about the implications for later claiming pensions (P27, P5).
Where benefits were successfully secured, these were always perceived as helpful. Two participants were able to use their Incapacity Benefit to regain social engagement by supporting themselves to study part time (P2, P16). A few gained Disability Living Allowance (P6, P15, P32). One person described being helped by Social Services staff to apply for 'direct payments', to employ somebody to carry out personal and domestic tasks, help with managing finances and, importantly, leaving the house for social contact (P32).
Some people could use state benefits, private insurance or savings to pay for different forms of practical help, including: employing an au pair for help with domestic tasks and childcare, (P24, P6), and employing a 'personal assistant', not just for physical domestic tasks but with home administration, like managing finances (P26).
Accessing employment: For people beginning to recover and wanting to increase their activities gradually to include limited part time work, income support was seen as too inflexible to allow this. The benefit stopped if people started work, even when they could not work sufficient hours to earn enough money to support themselves (P15, P19, P24). Their condition posed other dilemmas; to obtain essential benefits they needed to represent themselves as very impaired, yet in attempting to move back into employment or education, they had to represent themselves as minimally affected (P16, P18, P19, P12). Pressures from both rigid benefits systems and inflexible routines were found often to impede their recovery and continued employment or social participation.
The specific inequities participants faced were therefore closely linked to the attitudes, knowledge and behaviours of practitioners in health and social services and the lack of appropriately responsive, personalised services to meet their complex needs for health and other practical support, including means to manage financial demands. The interactions between these factors frequently increased rather than reduced barriers, so creating a socially unsupportive system experienced as unresponsive and inequitable. However, while non-White groups were seen to highlight their difficulties in securing financial support (as for social and practical support) they mostly did not draw further, explicit links with their ethnicity. Most participants called for more research to help evidence the treatment, management and social support for CFS/ME, together with more training for health professionals (P2, P15, P15, P18, P20, P21, P22, P25, P26, P35).