Jul 10

Patients/carers impact on academic culture in healthcare education: Transformational or negligible?

This is an important topic which requires a serious debate, not something I can do justice to in a¬†short blog! However, I feel there are some issues I think are worth highlighting. We all recognise¬†now that patient and public involvement (PPI) is important in all levels of healthcare services,¬†research and education. However, exploring the higher level impact of PPI within strategic decision¬†making within higher healthcare education is clearly a useful exercise that may tell us much about the effect that patients may be having on the way academics view patient involvement on the education of healthcare students. How to do this? Clearly experimental research designs such as randomised control trials (RCT’s) will not ¬†be suitable as we are dealing with often complex cultural factors between academics who are highly academically qualified interacting with individuals who may not be ‘qualified’ in the same way but have empowered themselves with their own expert knowledge base of their own lived experience and have been able to network with other equally articulate expert patients to develop into what is now being acknowledged as a ‘patient leader’. People such as Michael Seres (http://www.michaelseres.com/) Anya DeIong (thepatientpatient2011.blogspot.co.uk) and Alison Cameron (http://www.kingsfund.org.uk/about-us/whos-who/alison-cameron) are inspirational examples of what patients can achieve when health services, research and higher education take patient involvement seriously. Combine their contributions with innovative use of technology (eg ‘Skyping’ a patient into a lecture room when distance or other reasons prevent them from attending in person) and social media (Eg using Twitter to facilitate student ¬†exposure to patient tweets/tweet chats) can only help to break down barriers that may remain regarding patients making a firm contribution to healthcare student learning in particular. How do we judge however the contribution, if any, that patient leaders such as those mentioned are actually having of the education of our students? Does involvement such as I describe above and ¬†also planning of new programs, student recruitment and programme validation change the way some academics view the contribution of patients to ‘their’ students education? What effect would this have on the academics future thinking re PPI?

I suggest that using an ethnographic approach ¬†would be one way of observing and describing this impact on academic culture. This method would enable a long-term ‘view’ of this ‘culture clash’ (probably NOT the correct phrase!) and enable this to be put into some kind of context and ¬†perhaps a map out a future direction of research travel in terms of PPI impact and how we ‘measure’ this within healthcare education. Future blogs will explore this subject in further detail

Any views/opinions on the above most welcome.


Sep 14

What does REAL patient involvement look like in a Healthcare educational institution?

It’s high time for reflection and review. I have been leading the Experts by Experience group for a year now (with some brilliant colleagues!) and it’s high time I took a look at what the group has and hasn’t achieved over the last year and what it perhaps could achieve over the next year.

So, firstly, why a group in the first place? ¬†I think the biggest reason is that previously the Faculty had a policy of running the good old one-off ‘focus group’ event when consulting with patients/service users. Whilst its very easy to claim ‘consultation’ with patients, it becomes very difficult to audit exactly what you did as a consequence of the consultation. Its almost as if changes were made because of ‘osmosis’! ¬†You can keep repeating the focus groups but it is difficult to achieve continuity and usually no attempt is made to consult people between focus groups. These events quickly therefore become ‘snapshots’ of views and lack flexibility and insight created by ongoing relationships. ¬†Impact on academics that were involved however appeared very positive. Thats why I thought of developing a more dynamic model by using a reference group that meets regularly with contact between meetings. The ‘Experts by Experience’ group was thus born. In order to avoid the potential problem of the same members appearing, the group consists of individuals who are prominent in the patient movement and organisations that represent patient groups. This ensures the membership remains dynamic.

So, what has the group achieved? I believe it has begun to achieve an identity of its own. Certainly more people are aware of the group now, even to the top of the organisation, which can only be a good thing. creating a unique identity. recent successes include members being invited to join Faculty module and even programme scrutiny panels. Early signs are that members are being made very welcome by academics and, importantly, feel they are playing an important part in the panels deliberations.  These are early days but the vibes are looking good. I am curious as to the long term impact of such involvement on the patients and the faculty staff, and of course the students. Watch this space!

Apr 15

Successful PPI in Healthcare education: Is it about identity, values, culture?

Recently I attended the latest meeting of the Higher Education Academy (HEA) Lived Experience Network. This is a vibrant grouping of academics, patients/service users and carers that meet three times a year to share good practice within healthcare PPI in education in different educational institutions around the country. The host institute will usually ‘showcase’ their activities to encourage patient & public involvement within their organisation and ask for comments, observations, etc. Last weeks meeting was hosted by Bradford university and featured their service user and carer involvement group. They effectively told ‘their journey’ to date which has been underway for the last ten years or so.Some highlights include the development of an open online resource, the virtual fictional town of ‘Bradton’ which is based on real people and real groups (http://bradton.pbworks.com/w/page/51823092/Home%20Page). This is an amazing resource that any institution or group can utilise for educational purposes. Clearly a great deal of work has gone into preparing the material and could be considered a brilliant example of collaborative work between the academics of Bradford uni and their patient/carer partners.

Another example of what true collaboration can achieve, and is the result of the many years of evolving this relationship, is the university of Bradford school of health studies service user and carer involvement strategy publication. This document sets out in detail their commitment to service user involvement at each stage of the student journey, from student recruitment and induction, student learning and teaching, curriculum development, course approval, evaluation, governance and research and finance for PPI activities.

Its very clear on the school web home page that they prominently display their commitment to service user and carer involvement. To quote: “All our courses have been approved on the basis that there is substantial involvement from Service Users and Carers. As such students should expect Service Users and Carers to have an impact on their learning whether that is through face to face contact, in teaching sessions or assessments, through the production of re-useable learning materials, such as digital stories, audio or video and the evaluation and management of their courses”.

So, why am I extolling the virtues of the PPI agenda of Bradford university? Actually, other institutions also have well developed successful approaches that have been showcased at previous meetings, including Leeds medical school and Liverpool School of health sciences. Everyone has evolved their own way of doing this, although we can all share good practice and reduce the need to reinvent the wheel. However, I would like to speculate what those that are more successful at developing their PPI agenda have in common.

I would suggest that common factors amongst those institutions that have appear to have developed¬†a genuine commitment¬†to patient and public involvement have¬†a sense of their own individual ‘identity’¬†for PPI,¬†a shared set of ‘values’ between academics and patients¬†and have therefore demonstrated a¬†‘culture of collaboration’¬†in which to achieve high levels of involvement. They have a ‘can do’ approach to involvement that can overcome the many barriers ¬†I have discussed in a previous blog entry. What evidence do I have for these observations? Here are some brief reflections:

  • The service user group have developed their own logo, leaflets, web presence, mugs, etc. They have their own distinct ‘identity’ within the school.
  • The pride demonstrated by a patient when she talked about being involved with students and staff in ways in which she could see the contribution she was making.
  • The words spoken by the Dean of the school within the strategy guide foreward when she talks about he school “being serious in its commitment to¬†want to¬†(her italics)¬† place service users centrally and to move beyond mandatory requirements.
  • The ‘buy in’ from the school (academics to finance) that makes this work across the school (plus a very generous PPI budget!)
  • A shared set of values is evident from taking account of all the above.

Clearly this is not evidence and is only my brief observations/reflections based on a document, website and a meeting. Its also not the only way to become successful at PPI and by their own admission Bradford is a work in progress. What is clear is than many other institutions are deciding to grasp the nettle of PPI seriously and overcome the barriers that are present within universities¬†per se,¬†and doing this in differing ways. It does appear that this ‘shared set of values’ could be considered common to those institutions that appear successful. This is only a personal observation however and would need further study to explore. ¬†However, the challenge ¬†increasingly will need to move beyond developing a successful PPI culture to determining whether such a culture, or any other PPI approach, actually makes students into better practitioners, which could then mean improved patient outcomes for all. In other words, what impact does PPI in healthcare education have and how can we measure/observe/explore and record any impact it¬†may¬†have had.

Comment is always welcome about any of my blogs.


Feb 03

A new way of producing ‘face to face’ patient teaching sessions:

In my blog last October (‘Using technology to go beyond ‘face to face’ patient/student sessions’) I mentioned using technology as an alternative to ‘face to face’ teaching sessions with patients and students. There may be many reasons why this is preferable to an actual ‘face to face’ session. Perhaps the person has a physical disability that may make attending in person difficult, or even a mental health problem that means meeting large groups of students a psychological problem. Distance could be a factor also, especially if the session is quite short and travel time is therefore potentially much longer than the session!

In the blog I mentioned above I talked about Skyping an expert patient into a meeting as they were unable to attend the meeting itself. This went smoothly, although there were only 6 people in the room, the camera and microphone within the laptop used proved adequate. This person later reflected that they felt fully part of the meeting. Taking this further then, I decided to explore the potential of Skyping a patient into a teaching session to a group of over 30 students. This person actually lived 50 miles plus away from the university so asking them to attend a 30 min session was really impractical. However, Skyping on a large lecture screen takes some planning, so I decided to try out the feasibility. I was confident the person I was to Skype had a good bandwidth having previously Skyped with them several times. The main technical issue was always going to be the lecture room. I decided to try a test with a colleague using equipment I already had, a usb PC webcam and a small usb microphone which had a conference mode. In this case a Samson Go Mic I normally used to record audio podcasts proved more than ideal. First, you need to install Skype onto the lecture room PC. This proved easy as it was a university approved application. The mike is an easy ‘plug and play’ installation, as is the usb webcam. My Colleague used a tablet with Skype to locate in an adjacent room and be the other end of the call. Using this very basic equipment, the test call worked smoothly, even when testing the sound at the back of the room. Amazing that a mike just a couple of inches high can be so sensitive! The video even when blown up onto a large screen did not pix-elate or break up. I was surprised that only using such basic equipment brought such high-quality results. Now for the real thing!

The day of the session arrived. My plan was to cover knowledge/theoretical issues for an hour and Skype in my ‘expert patient’ for the last half hour. They were to address the group for about 15 minutes and then have a Q & A session. I had previously given the students some ‘pre-work’ a week before which consisted of reading selected blog entries on the sessions theme published on the patients personal blog site, also asking the students to think of a question ¬†they would ask the person if they had the opportunity. This worked well in reality and the students really engaged with the first part of the session. I admit to some nervousness when the time cam to ‘ring’ the person on Skype, although I had previously made contact via text to check all was well before I started the session. The Skype was extremely successful so I needn’t have worried. The students really engaged with the person and listened intently with their presentation. Some excellent questions were asked and I received some instant, positive feedback. Success, but what have I learnt about the pros and cons of using this approach?

Firstly, as with all technology approaches to teaching and learning, prep is everything. Trying out the Skype connections both with the person you are Skyping and the equipment was essential both to ensure smoothness of operation, to identify any issues and lastly (and probably most importantly!) to reduce my anxieties of equipment failure. ¬†Good prep with the person you are Skyping in to the session is also essential. Briefing them regarding who the students are and the theme of the session is crucial. I am not however in favour of ‘telling’ the person what I want them to say. I am inviting a person to comment on their thoughts regarding the sessions theme, in this case regarding their thoughts about expert patient from an individual and health services perspective. This may or may not reflect my own specific views but that is less important that exposing the student to differing viewpoints within their learning experience. Having asked the student to pre-read the ‘expert patients’ blog entries around the chosen theme enabled the students to formulate questions to ask during the Q & A session based on the patients own views and writings. Potential disadvantages of using this approach included the possibility of technology failure, although in my view we have reached a point now when broadband access is reliable enough for this not to be a realistic issue. The equipment required for this exercise as described previously is pretty basic, although some academics may still not have the confidence to give this kind of session a try. To me it offers flexibility of combining a more traditional presentation that may cover more theoretical elements in depth that is joined with an interactive element where the students can fully engage with a person in which they have previously accessed that persons written work in a way that would be prohibited due to distance previously. Whilst I would not want to fully replace all live face to face sessions in which the person physically attends the venue, this approach can offer potentially more opportunities to expose the students to the lived experience than just relying on physical appearances can ever do.


Dec 03

How do you measure patient/carer involvement in HEI’s and what is success?

Personally, this blog post for me is part of an on going¬†challenge¬†as I try and embed a culture of involvement within a Healthcare education Faculty. How will I measure success and achievement? Do I use quantitative (numbers) or qualitative (words) measures? Using a hierarchy measurement such as the ladder of involvement is one way of measuring involvement success. This ladder, clearly heavily influenced by Arnsteins citizen participation ladder, was developed by Tew to enable a closer examination of how institutions were allowing true service user/carer involvement within mental health professionals education. Therefore higher-order involvement activities that go beyond the so-called ‚Äėface to face‚Äô patient/student session that may include recruitment, programme and module design and student assessment amongst others will be reflected in the higher steps of the ladder. A condensed version of the ladder is as follows:

Step 1:       No involvement

Step 2:¬†¬†¬†¬†¬†¬† Limited involvement (“tell their story” sessions, etc)

Step 3:       Growing involvement (at least two of: Module/curriculum planning, stud selection, student assess, etc)

Step 4:       Collaboration(Full team members re step three, payment for teaching at full visiting lecture rates, etc

Step 5:       Partnership (All key decisions made jointly, PPI funding strategy, statement of values, etc).

See page 54 of this document for a beeter explanation of the ladder of involvement: http://www.mhhe.heacademy.ac.uk/silo/files/learning-from-experience-whole-guide.pdf

It would appear at first glance this ladder would be useful in allowing an institution to reflect on its growing involvement work. However, looks can be deceiving. For example, an institute could have a policy of including patients/carers within their recruitment activities for students and ‚Äėclaim‚Äô they do this from the perspective of measuring themselves against the ladder of involvement (see steps 2 and 3). However, having a policy is one thing, frequency of achievement is another. I would argue that unless patients/carers were present on the majority of recruitment events it could not be claimed that this has been achieved from a ‚Äėregistering on the ladder‚Äô perspective. This observation is valid in my view for all hierarchical measurement structures. Anyway, should we be solely using a quantitative (numbers) system of measuring involvement success? This blog is called the experts by experience blog and perhaps therein lies a possible solution. Why not use a qualitative (words) measurement approach to supplement use of the ladder and ask some ‚Äėexperts by experience‚Äô who are involved within educational institutions if they truly feel involved?¬† ¬†Do they feel overawed and outnumbered by academics at meetings?¬† Do they feel listened to?¬† Do they feel they make a difference? These issues are crucial as institutions start to grapple with the issue of patient and public engagement and how we can measure their effectiveness to our student learning. ¬†Ultimately, success is about ensuring that our students become better people centred practitioners who are prepared to listen to expert patients and facilitate empowering, collaborative relationships which encourages shared decision making and effective self management skills that will ultimately benefit everyone.¬† I will explore my thoughts as to how we measure the student experience of patient/carer involvement in education in a later blog.


Oct 29

Using technology to go beyond ‘face to face’ patient/student sessions.

My last blog argued that the good old ‘face to face’ session in which a patient talks about their lived experience to students¬†is an example of tokenism if its the only involvement approach used. Too often in the past these sessions have only been used by academics as a way of allowing students to hear ‘from the horses mouth’ what its like to experience health conditions of all kinds. What’s wrong with this, you may well ask? Well, nothing, if you do it properly, do not overuse this method¬†and its not the only type of involvement method you use. ‘Doing it properly’ in my view requires academics to really get to know your expert patient and be kind to them. For example,¬†sorting out¬†transport issues such as taxis or car parking slots beforehand if required. Spend time before the session and after it to ensure the person is ok. Brief the students before the session. One of the most important aspects that enables¬†a face to face session to work is for the teacher to stay in the room with the person and before any one shouts ‘power and control issues’, I see my role as the intermediate¬†to clarify issues between students and expert patient, not to control¬†the session to my preconceived ends!¬†¬†Whilst its true that all teaching sessions need to have learning objectives, a session that exposes students to the lived experience of a person¬†is by its very nature¬†a unique learning opportunity for all, including myself as an academic, and the expert patient themselves. It is useful however for all¬†these good practices to be included as a protocol for staff who are inexperienced with such a session and would otherwise lack the confidence to¬†do them (this lack of confidence is then a barrier if it prevents some academics from utilising lived experience sessions).

Sometimes however the retelling of a strong, emotionally resonant story can be very difficult for a person, particularly if they are regularly asked to tell it to differing audiences. In this case I have utilised recording the story (for example, using an mp3 recorder)¬†and making it available to students to listen to as an audio podcast.¬†Any face to face session could then be utilised as a question and answer session if appropriate.¬†Alternatively, why not utilise online resources?¬† Q and A online forums, blogs and wikis are examples of how technology can be utilised to enable students to be exposed to the lived experience if the person themselves fely comfortable with such technology.¬†¬†Recently with a colleague¬† l was involved in a meeting with a group of expert patients on the planning of a Q & A panel for students. One person was unable to attend the meeting in person so we utilised Skype to enable that person to be equally involved in the discussions. Using technology such as this can enable even¬†the most disabled of patients to participate in involvement activities. A colleague once said to me they didn’t ask patients to attend face to face sessions as most of them would be too disabled! Using technology as in the previous example can help overcome such barriers.

As technology becomes ever more important within the education of students, there is no reason why we cannot also utilise it more to be¬†creative¬†and allow our students to be exposed to the lived experiences in more accessible ways. These can¬†help overcome access and ’emotional fatigue’ problems that can often arise when a person addresses students in person. However,¬† if that method is used¬†as I have argued, please be kind in the way it is conducted and always adhere to the needs of the person involved.

Oct 05

What actually IS patient/carer involvement in healthcare education: ‘exploding the myths’.

I am still asked frquently by my academic colleagues to define exactly what is patient/service user/carer involvement in the education of our healthcare professionals. To answer this question i feel I need to turn it around and actually talk about what it isnt. So here is my myth-busting list of what involvement isn’t!

  1. Myth 1:¬†‘ Involvement only means wheeling in¬†an ‘expert by experience’ in front of a bunch of students’. Whilst face to face sessions can obviously be valuable in exposing students to the lived experience of¬† dealing with a condition on a daily basis, there are serious pitfalls that you can fall into with only using this approach as an academic. One is the accusation of tokenism. The ‘ladder of involvement’ (http://www.mhhe.heacademy.ac.uk/silo/files/learning-from-experience-whole-guide.pdf) puts this on the lowest rung but one if its the only involvement activity an institution supports. Face to face sessions, albeit having a place in exposing the lived experience to students, is very close to when patients were traditionally used by doctors to be ‘talking illnesses’ to be prodded (mostly metaphorically!) by an audience of medics to enhance understanding of specific, often rare¬†illnesses. Clearly there are many successful ways of exposing healthcare students to the lived experience as well as face to face sessions. These include: podcast interviews (audio & video), Skype sessions, online forums and written testimonies, apart from more strategic involvement, including recruitment, assessment and even employing service user academics.
  2. Myth 2: ‘One-off focus group events can tick the involvement box’. I’ve tried one-off focus group events in the past. Essentially, you invite a group of patients/service users/carers from a multitude of backgrounds to a meeting and ask them to discuss specific questions/subjects on opinions that you want to elicit from them. There is nothing wrong in principle with this activity, indeed rich information can be gleaned from such gatherings. However, IMHO, successful involvement is about the institution being able to nurture relationships with a group of individuals and indeed organisations that represent differing groups, over a period of time. This can develop trust and engender a real partnership between all stakeholders that can achieve real change.
  3. Myth 3: ‘Involvement learning events can be slotted in where we can find a space, its not that important’. Ok, this is where I will admit to some bias. I believe¬†Patient/carer involvement in all healthcare education is crucial for many reasons (too many for this blog entry!). However,¬†if we are to help¬†avoid situations such as the mid¬†Staffs disaster not to reoccur, any module in a healthcare education curriculum should contain some student exposure to the lived experience (as argued previously, its not just about face to face sessions!) unless you can specifically justify why not to include it.

This has only really been a snapshot view of exploring the myths of involvement. I believe this is a movement that will only increase in importance regarding the education of healthcare professionals. Remember, the patient should be at the centre or ALL we do in healthcare (and healthcare education!)

Sep 22

To pay, pay a little, or not to pay: That IS the question!


A subject that has taken up quite a lot of my time recently is the subject of the payment of those with lived experience who become involved in various ways within healthcare higher education institutions. It must be said here and now that no one person (living or dead!), is intended to be singled out for criticism in this blog!  However, it is plain that many healthcare education institutions have been less than flexible when it comes to paying people. I read that one hapless institution (in order to honour a bus ticket) took six weeks to post a cheque for 80 pence! Clearly the issue of paying those with lived experience a fair rate in a speed and format that is acceptable to them has challenged even the most flexible of finance managers! What then then is the solution, in my view?

It seems plain that systems that institutions have been using for decades are probably not going to change. Although it seems logical to pay people in cash on the day, this¬†option appears clearly beyond most institutions to facilitate, so I believe other options need to be considered. One possibility if the person is associated with an organisation such as a charity, is the charity being paid and then they reimburse the person. This would take account of slow reimbursement from the institution and the charity could then reimburse the person ¬†more conveniently. However, I don’t believe that service user/carer reference groups within higher healthcare education should be exclusively supported by organisations as articulate individuals can also have a valuable role to play.

What about payment rates? (In addition to travel expenses of course!) This is a tricky question for some people, although in my mind it is straightforward. There should be a sliding scale of payment depending on the involvement activity, with face to face sessions coming out top at the same payment rate as any external speaker. Travel expenses should ALWAYS be paid in addition as otherwise the person who has the furthest travel is penalised. There should also be a payment rate if we expect people to prepare for meetings by reading policy documents, for example, in advance, and of course it is a persons right to refuse payment of any kind.

To me the actual detail of the arrangements, which can be easily agreed, are less important than the principle that is at stake here. This is the importance of having the discussion about payment rates in the first place which indicates that institutions are serious about the whole subject of including those with lived experience in the education of future healthcare professionals. It is up to each institution to be flexible enough and to have the will to succeed and make payment happen in a fair and equitable way.


Sep 09

The Patient Patient: a little plug for another blog (if that makes sense!)

The Patient Patient (http://thepatientpatient2011.blogspot.co.uk/) is a blog that I would heartily recommend for anyone interested in the whole subject of people empowering themselves to manage their own long term health condition.¬†Healthcare¬†practitioners have so much to learn from those with the lived experience of many years suffering serious health conditions. In my view, true person centred care should always be with a view of allowing the person themselves to make the long term decisions about what kind of help and support they want from healthcare professional expertise, taking into account their¬†guidance and knowledge, particularly regarding the¬†improvements in treatment that are occurring constantly. Anya De Iongh’s blog is her own thoughts and reflections on living with several serious health issues that for her have been life changing. Her courage in taking charge of her life should be a lesson of hope to us all who work in the caring professions.

Sep 09

Patient, service user, client or what?

Here’s the thing: What do we call those with lived experience that we invite to contribute to¬†healthcare students learning? There are many labels but are any the right ones?¬† Ive always had a issue with ‘patient’ since I first learnt about Parson’s ‘sick role’ theory. This is the one that suggests that a person will act out the role of being sick as soon as they are awarded the label. I experienced this myself when I was admitted for an urgent op into a surgical assessment ward the year before last. On admission to the busy ward I was ushered into a cubicle and ‘told’ (by a VERY assertive care assistant!)¬†that I was required to undress, put on a pair of dreadful hospital pyjamas and get into bed. Before I had a chance to say the phrase ‘patient and public involvement in healthcare’,¬†I was a ‘patient’ with apparently full rights to be ‘helpless’ and ‘sick’ (It’s¬†very easy to collude in this, by the way!).¬†In the end my op was delayed so long it had to be¬†performed the following day, so I had been a ‘helpless patient’¬†for no reason really, and nil by mouth to boot!¬† ‘Patient’ therefore seems too passive for me but many people still prefer it, including students. Recently when running a multi professional learning group with a colleague consisting of students of many different professions (Nursing, medical, pharmacy, social worker, physio, radiographer, etc),¬†one student when asked could only think of patient as a label for the people who use health services and no other! (It was the medical student and¬†the social worker student soon put him right!). So, is service user any better?

Service user as a term often appears most comfortable in the mental health arena, but things are more complicated than that. Many ‘service users’ don’t actually like being called by this label.¬†According to the mental health foundation in an informative web¬†page on terminology (http://www.mentalhealth.org.uk/help-information/mental-health-a-z/T/terminology/), service user is¬†‘popular with service providers’ which goes immediately against the grain with me as I prefer to use terms decided by people themselves and not the services who work with them, so lets move on.

‘Client’.¬† So lets move on (!)

Lets talk about a current favourite of mine and indeed the title of this blog site, ‘experts by experience’. To me this label¬†raises up the status of people to equal that of healthcare professionals, which is how it should be.¬† In my view, health services have talked for too long about ‘person centred care’, putting the patient at the centre of all we do. Equal status helps us get there in a potentially profound way. After all, if a person has successfully managed a long term health condition for several decades, what right has anybody, even with several years education, to tell them how to run their life?¬† Healthcare professionals can offer advice, information, knowledge though that can be invaluable to the person in improving their self management skills. Rachel Perkins argued this was similar to a lawyers way of working (they put their expertise at the person’s disposal) and I agree with her quote¬†‘on tap not on top’.

So where does this lead us to? Well, all this talk about labels actually misses the point in my view. Clearly, the label should be chosen by the people concerned and not the professional or the academic. However, what is really important, whatever the label used (and I have missed quite a few), is that of power and responsibility in the relationship between the person trying to manage a long term health issue and the healthcare professional, acknowledging that the label itself may be a factor in this dynamic. In my view, who ultimately wields that power and how it is utilised can be a very influential factor in people empowering themselves to live a life as unaffected by their condition as is possible to achieve.