Acknowledgment – This blog post is a personal opinion piece of initial thoughts after attending conference, with an aim of being a critical friend, often just asking questions I have yet to determine the answer, if indeed there is an answer. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.
Micheal Rosen is a children’s author and poet, best known for his book ‘We Are Going On A Bear Hunt’. He joined the RCOT conference this year to kindly give his account of his recovery journey from Covid 19 that included having to learn to walk again; He has also written a children’s book about this experience called Sticky McStickstick ‘The Friend Who Helped Me Walk Again’.
We can learn so much from listening to people who have experienced receiving care and the impacted it had. It’s important for services to grow and develop to hear what was good and what was not so great, and address both.
Regular readers of my blog will know I have my own recovery story from Covid 19 and along hospital stay. Initially I intended to just write about Michael’s journey, however his story made me reflect on mine, parts I have not shared yet, and this has become the focus of this blog post.
Intensive care units (ICUs) are specialist hospital wards that provide treatment and monitoring for people who are very ill. They’re staffed with specially trained healthcare professionals and contain sophisticated monitoring equipment. ICUs are also sometimes called critical care units (CCUs) or intensive therapy units (ITUs). – NHS.UK
Micheal talked about his long induced coma, his lack of memory of this time. Explaining having to rely on his wife and information written in his ICU diary by staff for him to tell this part. He touched on the impact of the pandemic on limiting visiting from family, recalling a time his wife was able to visit in an atrium of the hospital and played videos of his family to help bring him round. He recalled some therapy input whist here. Using the term therapist thought-out his talk, acknowledging he could not recall who was who during this time.
When asked if his psychological needs were addressed, he stated at the time I thought yes, but on refection they’re were gaps. He reflected on attending a parliamentary review of intensive care, where there was an acknowledgement that more needs to be done to combat the impact of trauma, for those that have lived through an ICU admission.
My own memories of ICU are mixed up with things I now know were not real, being kidnapped, and using a swimming pool on the roof of the hospital, there are others I have yet to determine were real, and it is those that have really impacted on my mental health.
I was very low and suicidal at times. During my time in ICU I was seen by a psychologist, and later when in a rehab ward had weekly phone-calls with a councillor from liaison psychiatry. All of which was useful, but after a while I felt it was just getting me to mull over what had happened again and again, rather than find ways to move on.
In recent months this trauma came back, finding help in the community was so much harder. A GP who was unfamiliar to me basically said, you had great access in hospital, and left it at that.
I sought help via my employer, which did get me seen, assessed and put on a waiting list, for treatment which I am still waiting for. The assessment process is repetitive, in all access to physiological care and long covid care, I have been asked to complete questionnaires about the state of my mental health. Which I’m sure are intended as a risk exercise and outcome measure, but this was never followed with any useful treatment, repetitively being asked about low mood and suicidal thoughts only makes me relive them.
Reflection – Throughout my 15 years working as an occupational therapist in mental health, I have used outcome measures that ask about the negative impact of a persons mental health on their occupational performance. We would then set goals often in that same session to work on. Talking about your feelings is important, but becoming more proactive and focusing on things you want to achieve just makes more sense. (but I am bias)
Challenge – As occupational therapist we are dual trained, but perhaps the systems we work in that are diagnostic lead pressures us to forget this? What could you do differently in your practise to ensure you are addressing both physical and emotional impacts on occupational performance?
General ward and rehab
Once Michael left ICU he was moved to what he called a geriatric ward – he stated he did not want to criticise the NHS, but this was not the right place for him. Later he was send to a rehabilitation ward where he got the help he needed including lots of physio and occupational therapy.
Micheal talked about the motivation of others to engage in the therapy; using the analogy of school to explain his thinking, and people ‘bunking off’ when describing someone else’s lack of motivation to engage in the therapy. He reflected a lot about staff and family encouragement, talking about walking again which he said he thought was nice but not possible.
As he engaged in therapy, his identity became intwined with the equipment he was using. He talked of being a walking frame person, then a wheelchair person, in his book he says he loved the wheelchair, and was able to move around independently seeing out of the window for the first time. Followed by a stick person, and eventually able to walk unaided, touching on a relationship with his walking stick that was positive, even feeling guilty at not needing it and leaving it behind. In his booked he mentions its there in the hall way just incase.
Since the presentation I have purchased this book and have read it a number of times with my 4 year old niece Lyra, who has been a big part of my motivation in my recovery. We love the book, and would highly recommend.
Although my journey of recovery is much longer than Michael’s, there are similarities. After ICU I too was sat on a ward that did not meet my needs, whilst waiting for a rehab bed. Micheal joked about being the opposite to Amy Winehouse, ‘I will go to rehab yes yes yes.’ for me it was ‘I want to go to rehab but the criteria says no no no’
Sat for months before a bed in a rehab ward was agreed. I did however have access to therapy, including speech and language, daily physio and occupational therapy, and regular input from a dietitian. I have very fond memories of this input much of which I have focused on in other blog posts. As I write this a big smile beams across my face, it was a painful time, but I very much felt cared for and not given up on.
I have mixed memories and feelings about my time in rehabilitation. It was a neuro-rehabilitation ward, my existing cerebral palsy was what qualified me to meet the criteria, has a neurological condition it was having an impact on my body rebuilding itself from the de-conditioned of a nine month hospital stay.
I had little involvement with occupational therapy when in rehab. The OT’s mainly worked on the functioning impact of those on the ward with brain injuries. They ran set groups; as treatment sessions, that did not meet my needs. I was however given some goals, and a quiet space to do some things that I wanted to do, mainly writing for my blog or presentations for conferences of which I did twice from my hospital bed. Later OT were involved to arrange discharge and the equipment I would need.
I recall when engaging and listening to the others I shared a bay with; these are the insights I need to remember and take with me as I begin to return to work. Hearing what people really felt about the therapy they are experiencing.
Like Micheal explianed their were some including me who wanted to ‘bunk off’ the gym occasionally. Finding the motivation to engage is hard and on refection is often harder than doing the exercises. More could have been done to explore this I feel. Often the other ladies in my bay would express frustrations, of not being listen too, excluded from ward meetings about themselves. As for therapy, time limitations of physio therapy sessions in the Gym, not feeling they were improving, or disappointed in the exercised done, were very common. I recall an occasion where a nursing assistant, commented on my lack of engagement and not getting out of bed at the weekend. There was no therapy at weekends and due to covid no visiting either, I was unable to leave the ward unaided and the ward did not provide activities. What would you have done?
Others I shared a bay with often didn’t see the point of the groups or tasks they were given by Occupational Therapy. Including a breakfast group, in an ill-equipped kitchen. A quiz group, and being followed walking to the hospital shop. Of course as occupational therapist we know why an OT might engage people in these tasks, but what’s missing? Are we guilty of routine assessments and engagement rather than individualised assessment, goal setting and treatment interventions?
Reflection – The more I reflect, the more I see that criteria to access services and the manufactured environments and tasks we create to engage people, may be a barrier to assessing true occupational performance? A necessary one at times but something to be mindful of perhaps?
Challenge – Write down what barriers you think your service has. Be creative, (The answer isn’t always just more staff) Then do something about it.
I have one more refection to come and will post as I finish it. Please do share your thoughts. I would also recommend checking out RCOT Highlights of conference here . Remember for your continuing professional development its important to evidence you’re learning. One way to does this is to use RCOT’s 5 min reflection tool or even the Equity, Diversity and Belonging reflection tool