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Rehabilitation in detail

Specialist physiotherapist Pete Gladwell explains the results from our survey on GET, GAT and exercise on prescription.

In 2010, Action for M.E. followed up on its 2008 health and welfare survey by further investigating the experiences of people who have tried graded exercise therapy (GET), graded activity therapy (GAT) or exercise on prescription. These are all examples of rehabilitation therapies.

Rehabilitation is defined by the World Health Organisation as “a set of measures which enables people with disabilities to achieve and maintain optimal functioning in their environments.” It is commonly offered for a wide range of health problems, such as MS or after someone has had a stroke.

We hoped that the results would give us an even better understanding of your experiences, and inform discussions on this topic.

Better understanding

The survey showed that people’s experiences of these rehabilitation therapies were mixed. Since the statistical analysis was carried out (InterAction 75, p 11), we have undertaken further analysis of the data in the ‘free text’ sections, which encouraged respondents to write about their experiences to build up a detailed picture of what was helpful and what was not. It is the first time that this level of detail about what the therapies consisted of, and the respondents’ experiences of therapy, has been collected.

The information has been analysed using a qualitative research method called “thematic analysis” which searches for themes or patterns in what people have written. The results have been published online in the peer-reviewed journal Disability and rehabilitation, and will feature in the printed version of the journal in early 2014.

This detailed analysis focuses on the 76 respondents who had started their rehabilitation after 2008. This date was chosen as their therapist should have had time to learn about the 2007 National Institute for Clinical Excellence (NICE) guideline for CFS/M.E. (see the section at the bottom of the page).

The nature of this research means that we can’t rely on the survey findings to tell us whether the therapy is likely to be effective for other people, or how each new patient who tries the therapy will experience it themselves.

However, the findings do give us important information about what seems to be working well for patients who have tried the therapies, and what may be going wrong. This information can be used to guide patients and therapists to improve the quality of care in the future. We also used it to devise a checklist of things to consider when working with a physical rehabilitation therapist (see ‘Making it work for you,’ InterAction 83, p 32).

Positive experiences

The positive experiences reported in the survey are balanced by people experiencing opposite, negative experiences around the same theme. The themes for the positive experiences are explained here first.

Several comments confirmed the importance of good communication and a supportive approach. One person reported their experience of a “very good verbal assessment with useful information provided.” This initial assessment is clearly important, and should allow the therapist to build a detailed understanding of the person’s history and current situation. Others indicated the importance of a therapist who “listened and asked me what I wanted to do” and another spoke of “having someone who understood the illness and believed in it.”

Contact with a physiotherapist was seen as an especially positive experience for one woman who said they were “the only person I have seen in 20 years who has a real understanding of this condition.” Another commented on the fact that staff were “well-informed, supportive and experienced in treating patients with severe M.E.”

Routines and goals

Encouragement to develop a routine was useful for some; for example, one person commented on how this gave “structure to the day.” Several comments indicated the value of having a rehabilitation goal to work towards, seen by some people as helping to focus the process. A rehabilitation goal should be individual to each person, and should be appropriate for the person’s level of severity. One person said she “liked to see progress” and another commented on feeling “much happier to be doing something towards better health.”

Other activity-related benefits were reported, additional to any improvements in health which might include social benefits: one woman said she could “enjoy the company in the ladies gym.” Other people valued being outdoors in the fresh air and being less isolated for a short time.

Being able to move about more was linked to increasing confidence: one respondent told us they felt “more stable around [the] house and confident outside [the] home.”

Setting a baseline

Some found the baseline setting and pacing involved in their rehabilitation to be helpful in setting manageable targets for activity. As one respondent reported, it was “better to do a little and often” than push herself too much. Others explained how this worked for developing a foundation for rehabilitation: one respondent said they were “told to keep a daily diary with hourly updates of what I was doing (including sleeping/resting) – this was to help measure my mental and physical activities, however little. This then gave me a baseline to work from and build on.”

One person told us that, as a result of analysing their activity, they could identify new skills they had developed, such as “learning how energy is used, that each task can be split into mental, physical and
emotional energy/exertion, and trying to pace it.”

Several participants described the sense of control over activities that could then be gained. One respondent told us: “I was able to see what activities I was doing, and what affected me the most.”

Negative experiences

The examples of poor communication from respondents’ therapists to some extent reflect the absence in clinical encounters of the kind of positive interaction described above. Some people did not feel listened to, or felt misunderstood. A particular problem described by a number of people was a difficulty trying to communicate to therapists their sense that GET was not successful: one person told us that “[my] therapist refused to accept my comments that GET was not working for me.”

A specific area of difficulty centred on differences in beliefs between patients and clinicians about the nature of their condition and the role of rehabilitation.

Surveys by patient groups have reported that GET is harmful for some people (for example, Action for M.E.’s 2008 survey found that 45% of patients found it helpful, but 34% said it made them worse). This, and some patients’ own experiences, have led to an overarching belief that this treatment approach will make them worse, however it is applied. For example, one person told us that “any form of exercise is proven to be harmful to patients with true M.E.”

An experience of this conflict in beliefs between patients and clinicians was summarised by one person who said they had been faced with “negative attitudes from therapists and doctors; they still don’t understand M.E. and I think never will.”

Pressure to comply

Some participants reported feeling unreasonably pressured to take part in rehabilitation. One respondent told us: “I felt bullied. Even when I was too tired to do things, I had to do them.” Specifically, some patients were asked to ignore their symptoms and to continue to try doing more activity than they felt was appropriate. One person experienced this advice as being told to “push through it, ignoring how I felt and do more than I could every day.”

Some people reported how worsening symptoms after each session put them off continuing with the therapy. One person doing exercise on prescription in a gym wrote: “I was increasingly discouraged by the adverse reaction I experienced to the exercise after each session.”

Some problems arose around the difficulty in establishing a sustainable baseline, and there were some clear indications that the idea of a baseline had been misunderstood by patients and therapists alike. A baseline is not meant to be an individual’s ‘personal best,’ but a lower, sustainable level which the patient chooses for themselves.

A recurring theme across reports was the level of exercise being selected by the therapist, and experienced by patients as too difficult. One person said: “I was advised to push through any difficulties I was having as I had to find my baseline. I was treated like an army cadet on an assault course.” Instead of being supported to develop a setback plan, one person said: “I was told to continue with the session no matter what.”

Some patients found difficulties when they reported finding the therapy unhelpful, and felt that the blame was shifted onto them. One person reported that the therapist “made me feel like they didn’t believe how unwell it was making me and that it was my fault I wasn’t improving.”

Conclusion

The negative themes which were identified from the survey findings can offer some explanation for the negative outcomes from rehabilitation reported by previous patient surveys. Therapists who put pressure on patients, and who do not listen to them when working out a treatment plan, are contradicting the NICE guideline regarding GET. Therefore our survey results indicate that these guidelines were not being implemented in some clinical encounters. In contrast, a sensitively delivered rehabilitation plan suitable for people with M.E./CFS should not lead to anything worse than a temporary increase in symptoms.

We know from randomised controlled trials that rehabilitation does not help everyone, and that the benefits tend to be modest. If an individual is not making progress with a sensitively delivered rehabilitation plan, they should not be left feeling that they have in some way been at fault.

The findings of this detailed survey could therefore act to flag up warning signs that a particular rehabilitation plan is not sensitive to the problems faced by people with M.E./CFS. These negative experiences have already informed the development of the checklist of things to consider when working
with a physical rehabilitation therapist (see ‘Making it work for you,’ InterAction 83, p 32).

The checklist should help patients to identify where a rehabilitation plan is going wrong, and to remedy the situation. This might even involve finding another clinician that they can work with in a more flexible way. We hope that these findings can be used to improve therapist training, and can inform the development of quality criteria for physical rehabilitation therapies for M.E./CFS.

Examples of good practice

The positive themes identified from the survey can act as examples of good practice, and inform both clinicians and patients about what good quality rehabilitation should be like. The survey strongly indicates that it should be person-centred, goal-focused, based around sustainable baselines and incorporating a plan for setbacks. M.E./CFS is for most people a fluctuating condition, with setbacks being triggered by a range of different factors.

Appropriate rehabilitation should not increase the frequency or severity of setbacks, but it can only achieve this if it is flexibly applied, and incorporates a plan for setbacks. These same principles underpin rehabilitation for other neurological conditions, and people with M.E./ CFS should be able to access the same quality care that people with these other neurological conditions can access. By highlighting examples of poor care, this Action for M.E. survey has helped confirm what good quality care should be like.

NICE guidelines

NICE defines GET as: “an evidence- based approach to CFS/M.E. that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person.”

GAT is defined as a “person- centred approach to managing a person’s symptoms by using activity. Activities are selected, adapted and graded for therapeutic purposes to promote health and well- being.”

Exercise on prescription is where a GP or practice nurse refers patients to leisure centres or gyms for supervised exercise programmes.

The NICE guideline for CFS/M.E. says that, when beginning a course of GET, “the healthcare professional should:

  • assess the person’s current daily activities to determine their baseline
  • agree with them a level of additional low-intensity exercise that is sustainable, independent of daily fluctuations in symptoms and does not lead to ‘boom and bust’ cycles; this may be sitting up in bed or brushing hair for people with severe CFS/M.E., or gentle stretches or a slow walk
  • encourage them to undertake this exercise for at least five days out of seven, or build up to this level if and when possible
  • advise them that this level of exercise may mildly increase symptoms for a few days (for example, a mild to moderate increase in stiffness and fatigue), explain why this may occur and discuss strategies to mitigate it
  • offer information on the management of setbacks/relapses.”

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