A new chapter...

I began this blog in 2011, when much of my time, energy and effort was focused on self-managing my own health, and finding a new path ahead of me having become unwell and stopping my studies as a medical student.

Over the years I found writing this to be a really valuable tool to reflect and make sense of experiences I was having, both as a patient, and lately as a 'patient leader', and connecting with a wider community of wonderful people. The support I gained and the communities and opportunities that opened up to me have been instrumental in my own recovery and emerging identity and directions for the future.

In February 2020, I just started a two-year MSc to study and qualify as an Occupational Therapist. I feel very fortunate to be able to fill my days with the occupations of studying and learning on a professional course!

Some of the early reading I have been doing for my Occupational Therapy course have covered the concepts of doing, being, becoming and belonging (Hitch et al, 2014 - referenced in RCOT 2019 Learning & Development Standards). I can see how the occupations I have engaged in as someone living with health conditions were about 'doing' and 'being', but cumulatively have afforded me privileges to enable me to 'become' and 'belong'. At my worst, my days were skewed towards the overwhelming self-care tasks, leaving little time and a perceived lack of capacity (energy or ability) for any leisure or productivity occupation. With support, knowledge and confidence, I've been able to remove some of the barriers to those leisure and productivity activities, while maintaining a (reducing burden) of self-care tasks.

In her paper, Reflection in Professional Development (2013), Spalding notes the value of exploring the theoretical evidence to justify (or otherwise) our actions. Taking this approach, and reflecting on blogging as an occupation, I found a few papers (that although condition specific, so I have extrapolated their conclusions) which gave some reasons I could relate to about why patients choose to blog about their experiences (Hu, 2019 and Gualtieri et al 2013).

From the perspective of the person blogging, I have experienced the 'therapeutic benefit' of blogging and hope/know that some of these blogs have added value to those reading them as professionals to gain insight into patient perspectives. Building on the benefits of reading patient blogs for the wider community of healthcare professionals, I often give medical students reading lists after my lectures - of texts (most often blogs) written by patients, to give them insight into the conditions they are studying that aren't covered within the text books. For this reason, among others, I don't plan to 'delete' my blog. I plan to find a patient blog to complement the academic reading of each module of my course to ensure my learning remains grounded in the people who we work with.

Whilst self-managing is still an occupation I do each day, it is not the 'headline' of my days as it used to be. The experiences and writings from 2011 to 2017 as documented within this blog will always be a part of me, and the lens through which I see things. Whilst 'patient' or 'patient leader' are no longer the opening to my CV, they are nonetheless an intrinsic part of my personal and professional identity. As I add more tools to my toolbox through my academic and vocational learning, my formative experiences through those years will be the metaphorical oil that helps me think about how to use the other tools (assessments, therapeutic approaches and techniques) in my toolbox most effectively with the people I work with.

The sense of a need to post something to somehow update this blog has been with me for a few months since getting a place on the MSc course. I have also been all too aware that I haven't blogged here since 2017, when I started as Patient Editor at the British Medical Journal (BMJ) and had the opportunity to channel more of my writings through their BMJOpinion platform and editorials. It was a lecture on social media and its professional use and benefits that promoted me to write this, as I wanted to create clarity to give this blog context as time passes.

This blog, and the experiences it represents, are remain valid, in the sense that they are an honest representation of how I felt at the time. Because of it's context in that time and place, reading back, there isn't anything I would change, but I am aware as I deepen my knowledge and experiences about occupational therapy as a professional, I may feel differently about some aspects. The management of different conditions and circumstances will evolve as our profession evolves, while the experiences that people with health conditions have is framed within the context of the time and situation (both personally and socially) through which it was lived.

I hope that this blog remains of value for those who find it!

Self-Management Support - another misconception...

I recently heard this when telling a clinician that my interest was in self-management...

"The trouble is that there are those patients who do it all already anyway and then those patients who just never will..." 

I couldn't disagree with this statement in principle (there are people at both ends of the self-management spectrum), but when shared as an argument not to engage in supporting self-management (as it was used), it couldn't be more floored.

Lets break this down...

Co-delivered #meded with technology - a joint blog with @TrevorKet

There is a drive in healthcare education to use technology and involve patients and service users in teaching sessions. Combining these two important agendas, I collaborated with a healthcare sciences lecturer, Trevor Kettle (@TrevorKet). to co-deliver two teaching sessions using the Meetoo app (and Skype). This a blog of two halves, with my reflections and Trevor's reflections (so do make sure you read both bits!)

These were students on two different courses at the Faculty of Health Sciences at Southampton University – both post-graduate, qualified health and social care professionals. The sessions were both 1.5 hours, and the first was co-delivered in person, while the second was co-delivered with Trevor Kettle in the room, and me Skyping in. 

The Meetoo App is a platform for real-time polling and discussion that allows students to share their thoughts and reflections, opinions and ask questions.

This blog is a collection of reflections on these experiences. These are twofold:

-       the process of using technology and collaborative teaching as a process to educate

-       the content of the conversation we had with the students.

Underpinning all of this was a strong equal partnership to co-produce the teaching sessions, the content and process between Trevor Kettle and myself – for which I am very grateful. Far from being onerous, this collaboration to coproduce the two teaching sessions required only a preliminary Skype meeting of about an hour and one or two iterations of the PowerPoint slides being shared via email. We had a short reflective debrief afterwards. Trevor’s perspective on it all in included below...

Learning from Dorset CCG for the STPs

Despite all my complaints as a teenager to the contrary, Dorset is quite forward thinking, and it has demonstrated this in its approach to transformation in the local NHS. In mid-2014, the Dorset Clinical Commissioning Group (CCG) decided to take pre-emptive action to maintain health and wellbeing, quality services and to avoid a looming gap in local NHS finances and began a Clinical Services Review (CSR). With the aim of supporting people in Dorset to lead healthier lives, Dorset CCG recognized that significant, meaningful and effective engagement and involvement with local people who use services was essential. As with any project on this scale, engagement and involvement needs to be multifaceted. I was most involved in one these facets, as Chair of the Patient, (Carer) and Public Engagement Group (PPEG).

As the national conversation moves apace around Sustainability and Transformation Plans (STPs) and calls for engagement, involvement and coproduction grow louder, I wanted to share our learning in this context. We didn't get everything right, but I am really proud of the impact of the PPEG.

Me, my identity and I

This blog comes from the reflections from a lecture I delivered earlier this week to medical students. I didn’t feel it went very well, and while reflecting on it on the train home, I wanted to blog to clarify my thoughts on it, and prove to myself (I hope) that I can be articulate and clear!

When medications are necessary but not sufficient…

I love the question “I’m really interested to hear what things you have been doing or have tried already to manage your [symptom]?”

I always share it with medical students when I am lecturing, and use it a lot in my role as a self-management coach, when supporting individuals. But recently, the answers I have received in conversations locally have made me question our approach and thinking as a system to managing pain. It was summed up for me in a conversation I had with someone who wanted to manage their pain better. I asked what they had done already to try and manage the pain and a list of medications followed. After asking them about what other ideas they might have about how to manage the pain, I asked if I could share some ideas that other people have found helpful. After they agreed, I mentioned things like breathing and relaxing techniques and pacing, as they hadn’t been brought up in conversation so far. With all the ideas summed up, I asked what the person’s thoughts were, and their answer left me shocked…

I don’t think the suggestions you made will work, because if they did work my doctor would have suggested them to me already!

Potential of GP Surgeries

This week it has been the turn of GPs to be at the receiving end of the government blame game... no doubt us patient leader types will be in line one day soon, so before my morale is flattened like May has flattened every other type of person within the NHS, allow me a few paragraphs of positivity and hope! 

I've been wondering for a while about the real potential within primary care for person-centred care and self-management support, and various conversations recently, not to mention tweets in response to May's comments, have finally made me finish off this blog and press publish...

One of the arguments I hear about federated GP surgeries is about the economies of scale. I get that in terms of procurements, and have heard many examples of the benefits of economies of scale meaning they can bring in specialists such as in house physio’s and diagnostic equipment etc. I also think economies of scale in primary care mean there are great opportunities for person-centred and community centred approaches in federated GP surgeries. Think what a large Trust can do - patient experience team, engagement teams, information teams, support workers.... If large services in NHS Trusts (community/pathway specific) can do it, a la David Gilburt model of patient director in Sussex, so can primary care in the federated models. Let me share my optimistic vision for person-centred federated GP practices, facilitated by a specific job role... I know no-one in primary care has any time for this 'nice to have' stuff, but it is important, so lets gets someone to really focus on it. I'm not asking GPs to do this - god knows they have enough to do already. 

The 48 hours when I didn't think self-management worked...

I had about 48 hours mid-2016 when I honestly thought self-management didn’t work. Everything that I had based the last 5 or so years of my life (personally and professionally) was a lie. Those 48 hours painfully passed, and left me with a reaffirmed understanding of self-management and belief in the process.

That invisible way stress accumulates, that way you start to be aware of it and think that you can cling on until X or Y and then you can rest and sort it all out… and then very suddenly, you can’t and it all crashes down around you. I had what I can only describe as a the worst panic attack, but it was nothing to do with panic and more a depression attack, but with all the standard panic attack symptoms. Typical for me, with my history of major medical events, this happened whilst I was out sailing. Whisked away by my (utterly brilliant and unconditionally supportive) parents to my grandmothers house, a real safe haven for me, I was in shock and quite numb. Everything had just got a bit too much, and I had burnt out. 

Self-Management Support: Everyone's responsibility but no-one's job?

At an event recently of very senior Trust types, I started my talk by asking how many of those in audience had self-management support in their organisations - specifically a service, or someone with a role to facilitate it. In a room of about 70 or so, there were about 5-10 hands tentatively raised.

Are we in the era of self-management being 'everybodys responsibility but nobody's job'?

That’s Not My Job 

This is a story about four people named Everybody, Somebody, Anybody and Nobody.  There was an important job to be done and Everybody was sure that Somebody would do it.  Anybody could have done it, but Nobody did it.  Somebody got angry about that, because it was Everybody’s job. Everybody thought Anybody could do it, but Nobody realized that Everybody wouldn’t do it.  It ended up that Everybody blamed Somebody when Nobody did what Anybody could have.

I can't help feeling that the fifth figure of the right is how we feel as patients in this situation... and am reminded of the saying about elephants fighting and the grass getting trampled.

Red flags on a Monday morning…

Before 11am on a recent Monday morning, I felt in need of another weekend.

I was chairing a group of patients and carers, who meet to review transformation programmes locally.

In preparation for the meeting, I had spoken to the speaker to check timings and they were clear about what they wanted to discuss and how to do that. I was assured all was ok!

The meeting started well, and the first item on the agenda was introduced – prioritizing areas of a specific programme for in depth co-production engagement work. With 40 mins set for the item on the agenda, the first ten minutes quickly disappeared with an introduction on the process that got the programme to where it was that day, and the questions starting flying in… and my internal chimp mind (the italics below) went into overdrive and concepts of mindfulness went out the window.