Poder Judicial

In the initial stages of prosthesis use, prosthetists report varying degrees of expectation from patients in terms of what a prosthetic device will offer them and how it will impact upon their daily life. In the first instance, they perceive that individuals view the use of a prosthetic device as an immediate solution to the limitations and challenges imposed on them by amputation. The expectation that the prescription and fit of a prosthetic device will provide a quick, easy, one-time solution is often encountered. Prosthetists report difficulties where there is a discrepancy in terms of the individuals’ expectations and the level of rehabilitation that will be needed in order to achieve full, functional use of the device:

What they want to hear is: you’re going to be fine. This is going to be…you’re going to get a prosthesis, you’re going to walk out of here, it’s all going to be great and I think it’s really important not to say that. That’s a sort of short term fix. That will cause a lot of problems later on because that will fester with someone if it doesn’t happen and that really builds up some frustrations there. (James 469-473)

Prosthetists feel that part of their role is to encourage the patient to adopt a view of prosthesis use which is more aligned with that which the prosthetists view as appropriate.

115 Prosthetists see themselves as having a wealth of clinical knowledge which their patients do not have and as such they feel that this should be used to tailor patients’ expectations. This encompasses aspects, such as the time taken to prescribe and make the device to the level of physical input needed to achieve a level of functional ability. The prosthetists view the patients as not only having a limited understanding of the complex nature of their own condition but also a lack of appreciation of the rehabilitation that is required in order to reach the level of functioning sought. The prosthetists perceive a common lack of understanding of the practicalities of using a device. For example the physical input needed from the individual in order to fully achieve their potential is often underestimated which gives further concern to the prosthetists. Managing such expectations in order to match the service which the prosthetists are confident of providing becomes central to the prosthetists’ understanding of their role.

A variety of sources are identified by prosthetists as influencing patients’ expectations and beliefs. Media sources can often portray amputation in ways which are not representative of their experience of a clinical population. This adds a difficult dimension to their role as they attempt to counter these representations:

Ill-informed public opinion, high profile amputees e.g. ones that return from Afghanistan and ones that dance on ice on TV – who are inspirational in their own way – but these people are fair[l]y irregular and generally our patients are old and frail with comorbidities. (Adam, email 137-140)

Prosthetists commonly reported a perception that the focus of the media on exceptional cases, within the world of prosthetics and amputation, raises patients’ levels of hope and expectancy in terms of what can and will be achieved through prosthesis use. While such a high level of ability or appearance may be achieved in some cases, the prosthetists are keen to point out the differences between the average amputee and these, more unique, cases. In

116 particular, they stress differences in aetiology and personal circumstance, which have the potential to contribute to the final level of achievable rehabilitation. The presentation of extraordinary examples of prosthesis use are thought to have a negative impact on individuals’ expectations:

I think it can be quite negative because you can have somebody that’s quite old, in their 70s and they want to have a limb like soldiers have. They make it look so light on the telly and it’s not until they actually go to the store and get a knee or a foot and say that this is the weight that they’ve got and they just about drop it and think : It doesn’t look that heavy and you say : Yes ,but it’s all about perception. They’ve been about their peak fitness when ...the soldiers ((…)) It’s completely different. And you’ll get somebody wanting to run and I’ll ask if they ran before and they’ll say they didn’t. It’s just they see the Paralympics and the soldiers and they want to do a lot more. (Kate 21-29)

It is often unclear as to whether the raised expectations are potentially damaging to the individuals, or to the prosthetists themselves, in terms of the added difficulties it may present to them in their professional role. The perceived lack of understanding of the practicalities of prosthesis use present difficulties for the prosthetists in a professional capacity as they see themselves as having the additional role of managing these expectations.

In other cases where prosthetists point to patient knowledge being influenced by additional sources, this knowledge could be used to enable discussion and in some cases lead to progression in the understanding the prosthetist has of the individual’s circumstances. While this easier access to information may raise expectations, this also has positive benefits:

I can see the next generation coming through more savvy on information and maybe putting a bit more pressure and being more knowledgeable. The more knowledgeable the patients are, the more you can get involved in a discussion with them. (Steve 259-261)

117 In this case, the welcoming of patient knowledge and input into the decision-making process is reflective of other areas of the prosthetists’ experience where patient involvement is considered to be essential to successful rehabilitation. However, this is presented alongside the need to apply “pressure” to the prosthetists, putting conditions on the perceptions that the prosthetist has of patient involvement in this case.

Prosthetists also identify other medical professionals as influential in patients’ perceptions. Prosthetists perceive a lack of understanding from less technically experienced professionals of the complexities involved in the use of a prosthetic device and in adjustment to limb loss:

We have other medical professionals doing exactly the same thing which is very bad. You know, surgeons and nurses in other places maybe don’t have the experience saying: “Don’t you worry, you’ll go over to the ((rehabilitation ward)) and you’ll be up and walking in no time” and I’ve heard that reported. Patients have told me that whether it’s true or not but of course they have all these physical difficulties which mean they don’t do as well as they think they’ll do. (Eve 271-276)

Misinformed comments are reported to raise the expectations of the individual to levels which the prosthetists feel are unattainable which may, in turn, lead to disappointment if the patient does not achieve these levels. The responsibility once again falls to the prosthetist to manage these expectations and to counteract the misleading information provided. While such flippant comments may be made in an attempt to reassure the individual, there is the suggestion that medical professionals are likely to have their comments taken seriously and therefore should be more cautious in their discussions.

The level of expectation that a patient has, particularly in the early stages of rehabilitation, is identified as being problematic for the prosthetists:

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Probably one of the trickiest things we have to deal with I think in our profession that expectation level and something that’s raised beyond our control before we even get to have that discussion and sometimes, it’s rarely, but sometimes it can be that you’re going to have a consultation with your patient and it’s going to be confrontational from the start because they want this and you haven’t even had that discussion yet and it might not be clinically appropriate or it might not be something that we could even provide even if it was. (Angie 98-103)

Prosthetists are faced with difficulties when the expectations of patients are set, even prior to fitting of the device or consultation with the prosthetist. These expectations may not be within the realms of what the prosthetist considers to be reasonable particularly if the patient believes that the prosthesis will fix their amputation-related problems. The perception that this may lead to confrontation suggests that where the prosthetists are unable to meet the patients’ expectations this may be problematic. However, the use of such terminology suggests the attempts of the prosthetists to apply their own perspective rather than a two-sided cooperation in order to come to a mutually agreeable outcome.

Despite the perception that the expectations of the individuals are highly influential in their demands to the prosthetists and their satisfaction with the device, it appears that often these expectations are assumed rather than explicitly discussed with the patient:

I don’t know whether it’s done very often but I think it would be very interesting for people to ask their patients more often “what are your expectations here?” So you’ve got a starting point. If that was logged, so to speak, or noted, then it would be interesting to see how often they are met and exceeded in some cases, or not. (Steve 351-354)

The judgements being made on patients’ needs, expectations and levels of satisfaction without an explicit understanding of what these are in the beginning of the process suggests a

119 breakdown in communication. In addition this is further evidence for clinical practice based on prosthetists’ assumptions rather than an understanding of patients’ needs.