The following five themes were developed from the interview data: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. These are set out in Table below, which displays each main theme with associated subthemes and illustrative quotes from participants. These themes and incorporated subthemes are set out in the following sections.
Main themes, subthemes and illustrative quotes from interviews with health care practitioners (HCPs)
It was generally acknowledged that reaching a firm diagnosis of CFS/ME can be challenging for GPs working in primary care, who may have little experience of the condition. Even though several participants thought that the NICE guidelines were proving helpful, they saw the lack of any diagnostic test giving conclusive proof of the condition as impacting on practitioners and patients alike. One view was that until such a test is developed the existence of the condition will remain in doubt amongst some medical practitioners and policy-makers; patients on the other hand may continue to demand more investigations to try and prove the authenticity of their condition. However, the process of diagnosis in primary care was thought to have improved in recent times: becoming more timely, with earlier referral to specialist services, more certain and more accurate.
Exposure to new presentations of CFS/ME was considered important for improving primary care practice. It enabled practitioners to recognise the condition and develop confidence in their diagnostic skills. Very careful case history-taking, listening carefully and patiently to presentation of symptoms, with appropriate investigation were all considered vital elements of practice. It was acknowledged that some people with CFS/ME had had "quite a rough time with the medical profession" (HCP2) or worse still, "had been terrified by their previous contacts with medical services" (HCP6). Specialist practitioners develop awareness of the wide range of symptoms, whether physical or psychological, that can be associated with the condition, and their significance, through extensive exposure to CFS/ME.
The negative impact of 'no diagnosis', a delayed diagnosis or a mis-diagnosis were clearly acknowledged by these participants. Consequences of delayed diagnosis for improvement and recovery were considered significant, acknowledging that this left patients uncertain and with entrenched and often unhelpful patterns of behaviour. Misdiagnoses which were mentioned by these participants included depression and treatment for depression. One respondent talked about a woman who had been on antidepressants for two years and described her as feeling, "emotionally numb but not physically any better" (HCP3). One practitioner spoke about a patient who had been told by her GP, "it's in your mind" (HCP5) and pointed out that she was clearly depressed because she was tired, struggling to get up, and facing disbelief even from family members and friends. They realised that there are still patients whose diagnosis remains uncertain and where practitioners face the continuing challenges of unravelling conflicting evidence and beliefs. They affirmed that confirmation of diagnosis may represent the end of a long period of uncertainty for a person with CFS/ME and may thus be a significant relief: "they know what's wrong with them and they have an idea of what to do" (HCP1). However, they also observed that for someone who may have only been experiencing symptoms for a short period of time, the presentation of this diagnosis may not be quite so welcome.
2. Professional perspectives on the impact of living with CFS/ME
These practitioners felt that despite the periods of great uncertainty, doubt in themselves and growing mistrust of the medical profession, experienced by people living with CFS/ME, they may still find it very hard to accept the ultimate diagnosis. They highlighted how negotiating such ambivalence on the part of their patients could in turn create particular challenges for the health professionals engaged in imparting the diagnosis and supporting patients in managing its consequences. Adjusting to and accepting a long-term illness and its disabling consequences was acknowledged as being extremely testing, whatever walk of life a person may be from; yet people living with that illness may also be faced with the doubts of others about the authenticity of their condition. Practitioners found that while some people will accept that this is a long-term condition which may entail slow progress towards recovery, others will struggle to accept and then adjust or even to acknowledge that they have made any progress. People may go through a grieving process and experience bereavement for the things they have had to let go; this often takes time to work through and deal with, all issues which may call for sensitive support from the health practitioner.
Specialist practitioners found they therefore needed to provide holistic and flexible support for patients faced with managing serious restrictions to their lives and lifestyles which may lead them to stop work, and in extreme cases to become bed- or housebound for long periods. At the very least they have to constantly manage their activity levels so as not to push themselves into over-activity which can trigger the 'boom and bust' experience described by most of these practitioners, and being forced to remain in bed for several days to recover. These practitioners felt that people with CFS/ME may be stigmatised in the workplace, pressurised into downplaying their symptoms; living in fear both of losing what they have and of having a relapse due to consequent overactivity.
Specialist practitioners highlighted that CFS/ME impacts not only on the 'big things' such as employment, but even on basic day-to-day leisure activities such as reading or watching TV, which need concentration and entail a significant memory load. People's ability to sustain a conversation and take in information may also be impaired, with implications for how intervention is managed by healthcare practitioners. Even very simple things can cause a great deal of stress: not being able to get the children to school, getting into difficulties with the Local Education Authority, and consequently unable to do anything else until such ramifications are all resolved.
These practitioners identified that such dilemmas can further complicate access to support. Perhaps because of fears that family, friends or colleagues will not understand the condition, people with CFS/ME may try and keep other people, including members of their support network, away when they are at a low ebb. This can also prevent them really understanding the seriousness of the condition. People who do have good support tend to do better, but some people's lives and commitments make it very hard for them to act on advice. Parents of people seriously affected by CFS/ME may come under extreme pressure to have them back at home. It can be very difficult for carers to know how to act for the best, and they may end up giving very mixed messages, which may be confusing.
Financial pressures were identified as having a significant negative impact on health and recovery for people with CFS/ME. Personal and workplace pressures may be exacerbated by negative or inflexible responses from agencies involved in assessing eligibility for incapacity benefit (although there was some praise for doctors who conducted the medical assessments entailed here), potentially causing additional stress. People with CFS/ME may also end up paying for various types of private treatment, such as holistic or alternative treatments, but also CBT. Again, this makes access to health practitioner support less straightforward and more complex.
3. Treatment and management
Practitioners from specialist services felt that initially, receiving a diagnosis of CFS/ME may be so overwhelming that some people are unable to contemplate the implications or take anything in. Others, however, are well-prepared and well-informed, expecting to manage the condition themselves and implement changes to their lives and lifestyles. Those who do so tend to do well, whereas those who expect "you to do something to them and make it better" (HCP1) are inevitably disappointed and may not do well. They saw these patients as needing time to adjust to the necessity of making life changes; but even so, some may carry on, "fighting the idea" (HCP2) of CFS/ME.
The vast majority of people seen by the HCPs from specialist services were described as being 'up and about', able to attend a clinic and hold conversations. However, participants emphasised the variability between patients presenting with symptoms apart from the fatigue and where some other symptoms, such as headaches, gut symptoms or muscle pain may be predominant for some individuals. Additional complications arise with co-occurring medical conditions where, "the fact that they've got their ME means they're struggling to do what they should be doing" (HCP2). A very small proportion of people seen by specialist HCPs were living with a severe condition and were significantly unwell, confined to home, or bedbound in a darkened room, unable to communicate. Even the specialist HCPs found this extremely challenging and they may have very few helpful suggestions. Specialist HCPs would visit people with a serious condition at home, or if appropriate maintain contact by phone, especially to offer support for the family. People who had been living with a serious condition for a long period (e.g. 7 to 10 years) were particularly vulnerable due, for example, to the complex psychological issues associated with making the transition from childhood to adulthood while socially isolated and set apart from their peer group.
For this, admittedly minority, group these practitioners saw progress and change for the better as fraught with difficulty. They saw some of these patients as not knowing how to move forward, how to recognise or acknowledge improvement, even when this seemed obvious to the practitioner, and that their experience might well be enhanced with highly specialist psychological support, which, however, practitioners may not be able to access on their behalf. For other patients, even those with a severe condition, the messages tended to be positive - that "most people do come out in the end and they do start to move forwards" (HCP1).
These specialist practitioners recognised that for those with long-term illness, changing established patterns can be very hard. Some did report success stories, such as examples of people making a full recovery and returning to work, as well as examples of relapse and the breakdown of family support systems. While they thought that most of such individuals coped, "incredibly well" (HCP1) progress in itself can be difficult. Some people continue to fight the idea of CFS/ME and its implications, including actively seeking to engage with health professional services. It may take many months before they accept the condition and decide to make positive steps to change their lives by giving up work, reducing working hours, and making significant lifestyle changes. Then they may return to a specialist HCP for support. However, it is often hard for people to see that they have made progress, and progress when it comes may never be quick enough, in turn placing understandable pressure of expectations on the practitioner-patient relationship.
People try all sorts of alternative treatments and therapies, including diets, acupuncture, herbal remedies, tonics and lifestyle interventions. While some of these are reported as helpful, or at least found helpful by people with CFS/ME, from an NHS practitioner's point of view making any recommendations of such treatments is difficult because there is no evidence base for them.
Aspects of cognitive behavioural therapy (CBT) can be very useful in helping people break counterproductive patterns of thought and behaviour in some cases. However, engaging in the whole formal CBT process may not be necessary. Specialist practitioners were of the view that, in fact, for those who are very poorly, it is pointless. The stage at which CBT is brought in is important and relevant, but for many, the sort of counselling service available through a GP practice may be enough. Specialist HCPs said they often used CBT principles in their practice, especially where unhelpful patterns of thought and behaviour, anxiety or stress were evident. NHS HCPs all emphasised how difficult it was for adults with CFS/ME to access formal CBT, despite there being a small proportion of patients who would definitely benefit. Adults with CFS/ME rarely met the strict acceptance criteria set by NHS mental health services for CBT.
4. Professional values and support for people with CFS/ME and their families
Specialist HCPs identified a core minority group of GPs in their region who made referrals to their service, but contrasted these GPs with the many who did not understand CFS/ME, and who see it as a psychological rather than a physical condition. They reported whole practices as having decided that CFS/ME did not exist and that many GPs would never make a referral to a specialist service. Participant HCPs reported how some patients told them that their GP openly stated their lack of belief in the existence of CFS/ME.
All participants emphasised the importance and powerful therapeutic value of listening. One specialist said that, "patients will often say 'you're the first people that have actually listened to me'" (HCP2). Time limits in the primary care system often constrain patients from recounting their full story, and, "the doctor is too busy, they don't have time really facing the patients for five minutes just to say OK, then the computer, then done" (HCP5). However, these participants reiterated the need for practitioners to be knowledgeable, empathic, inventive and capable of learning, acknowledging the patient's condition and taking it seriously. They should be able to respond flexibly to people's needs, accommodate the difficulties inherent in the condition that affect concentration and/or physical access, remain positive and encouraging and work in ways that engender a trusting relationship.
Trust was considered to be a primary issue. For example, specialist practitioners were very clear in saying that not all sources of information were to be trusted. For some people with CFS/ME the internet may provide valuable information on specialist services; for others, it may be hard to access and a source of confusing and misleading information, "offering all kinds of magical, wonderful answers" (HCP1). Practitioners therefore reported exercising care about where they direct people for information which will help them understand or explain their condition to others; HCPs from specialist services reported using standard information packs and DVDs, and directing people to local support groups or expert patient programmes. They also reported recommending leaflets produced by Action for ME or the ME Association, and referring people to the Citizen's Advice Bureau (CAB) or Disability Information and Advice Line services (DIAL UK) for advice on disability-related support matters such as benefits or mobility issues. They highlighted the importance of providing appropriate and accurate information for employers of people with CFS/ME as well as employees with the condition. It could take pressure off the employee by making it clear that, "recovery [would] be a matter of months rather than weeks" (HCP4). One specialist practitioner felt that people with CFS/ME were stigmatised when it came to the workplace and advised them to, "tell their employer that you've just got post viral fatigue and it will get better, don't tell them you've got low grade ME" (HCP6). Specialist HCPs would often see people from high-stress, highly demanding jobs but felt it was unusual to get them back into the same type of job. They would often choose not to return to the kind of work that might have been part of the problem. However, some people might not have the choice, and would have to continue in full-time employment, limiting the potential for the practitioner to support life and work change strategies. Participants found that patients who were not in work mostly wanted to get back to employment, but that they needed to be supported to establish a consistent pattern of activity as an essential precursor to any successful return.
5. Health professional roles and working practices
Specialist HCPs all focused on the importance of engaging patients and enabling them to manage their own condition. Succeeding in doing this depended on their developing a relationship of trust, where they could support people to think things through, and then make their own decisions based on a clear understanding of what might need to be changed. Specialist HCPs described using a number of skills to enable patients to gain clarity and insight. They encouraged people with CFS/ME to manage their overall activity in different ways, rather than always just to reduce their activity. To develop a constant and consistent expenditure of energy, people with CFS/ME needed to understand their symptoms but it was not helpful for them to become too symptom-focused. These practitioners recognised that the challenges for people with CFS/ME were often highly complex and not to be underestimated.
Specialist HCPs acknowledged how much pressure some people had had to exert just to get a referral to their service. They emphasised that there was a need for specialist services to be more 'visible' and to provide education for other HCPs, GPs especially, because, "there is quite a lot of ignorance about the condition in the GP population" (HCP3). This perhaps was understandable because GPs lacked frequent exposure to these patients. Specialists had both experience and expertise to be able to support GPs and other HCPs in reaching or confirming a diagnosis (e.g. post viral fatigue vs CFS/ME), giving advice on appropriate medication, or providing services such as specialist Occupational Therapy. Specialists were involved in supporting people applying for benefits, often trying to help other agencies understand the variability inherent in the condition. They reported working in flexible ways with families or partners as well as with the person with CFS/ME themselves. This is partly because the family is naturally implicated due to the nature of the condition in restricting many everyday activities, but also because the person themselves may be unable to take in information and advice. They did indicate that referrals to the specialist service from GPs who did refer were becoming more timely.
Most of the specialist HCP caseload was reported to be white middle class and female, despite the participants' services being located in an ethnically diverse area. Patients seen were mostly in the twenty to thirty age group, far fewer men than women and far fewer people from manual or routine occupations, again despite the demographic structure of the catchment areas. One specialist HCP thought that the people from ethnic minorities who were seen in their service tended to be middle class anyway, and that men in particular, found it hard to come to terms with the loss of role associated with giving up work. The one exception was the HCP from London who was a holistic practitioner and who saw a range of nationalities: "...Pakistani, Indian, English local...no huge difference [in treating people from different ethnic groups]" (HCP5).
All HCPs who were interviewed described several sources of professional frustration in the course of working with people with CFS/ME. These included the lack of recognition or common acknowledgement of the condition by society and its institutions, such as health or benefits agencies; poor access to resources such as CBT or other psychological services when they were thought to be necessary; people with CFS/ME themselves, who either refused to acknowledge progress or ignored the advice that had been given but came back again and again; and finally, feelings of inadequacy due to the general limitations of knowledge and understanding about the condition and how to help people who are stuck and not making progress.