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May 17

Not the icing on the cake but the vital ingredient

Posted: 3 May 2017

Andy TildenAndy Tilden is a Director at Skills for Care and is using his experience to learn, reflect and report on the health, care and support he is receiving.

I told them my throat is now permanently dry and the pain is increasing, I have lost most taste, have difficulty swallowing, lost weight and increasingly fatigued. ‘Good’ the team said as that means the treatment is kicking in! I love my Oncology support team.

I’m now about halfway through my Chemo and Radiotherapy treatment. I’ve had some intense dental work, a face mask mould made for my radio therapy, a PEG tube inserted and I have 3 more all day chemo sessions and 19 Radiotherapy sessions to go.

I want to use this blog to highlight why those working with me are making my journey as easy as possible. I feel in control and a genuine partner in my health solution. I’m convinced this has not happened by magic but believe it’s due to the ‘small’ actions of many that have achieved this. 

I‘m being supported by an excellent team of professionals all working together to deliver great care. Each procedure is being performed to a high technical standard and I am grateful for that. They tell me I’m being a model patient, listening and reading advice and working hard to support the professionals. However I’m not convinced that the technical competence alone would give me the confidence, the positive attitude and the feeling of being fully involved in my care pathway. I want to highlight two examples that may support this.

The ‘not so positive’ experience happened early in my treatment cycle just after I had my PEG tube inserted. Those that know me will understand that I like my food and drink. Food and drink are key to my wellbeing. To have a PEG fitted and be told that I may have to feed myself with liquid into my stomach was a bit of a shock. Lots of great pre op work was, in my humble view, undone by a couple of teams of nurses on the ward and particularly at bedside handovers. I was taken aback the first time nurses and nursing assistants appeared at my bedside and proceeded to talk about me, about my PEG and my cancer without any introductions, eye contact or acknowledgement of me. They also seemed to manage to do this with every other patient on my ward.  This might not sound like a major issue to some but to me it was. I want to be central to my health solution, I want to do as much as possible to help myself get better and I want to be done with and not done to! I fully understand the pressures placed on our health and social care system but the outcome of this poor communication meant one Muslim patient was served non Halal food, I ended up showering even though I later found out I should not have, and I took up more time as I asked busy people questions that could have been resolved at the beginning.

What I describe above quickly stopped when I worked out what was happening. My solution - each time staff came to me I was quick to tell them my name and ask who they were.

Despite this blip I’m very pleased to report that the very positive experience of the wonderful and inspirational legacy from Kate Granger #hellomynameis is thriving amongst the team who are supporting me. The continued communication with me; explanations, support and comfort offered by dieticians, radiographers, doctors, dentists, receptionists, consultants and nurses has been empowering and outstanding. I’m convinced that it’s this wide range of ‘softer skills’ and behaviours that are alleviating my fear, instilling a greater confidence, supporting my wellbeing and above all making me feel that I am in control as a partner in the ‘process’ I am going through.

Given the unprecedented pressures placed on the health and social care system there may be some who struggle with the importance of saying hello, introducing themselves and asking what matters to me. To this argument I would say that if you allow me to be in control, as much as possible, I will save you time, resource and money, and it is a vital building block to my self-care and wellbeing.

Health, care and support that recognises the central role of the person to be in control as an active partner in their health solution is not the icing on the cake but a vital ingredient of the cake itself.

If you’re interested in developing the skills of your staff to deal positively with some of the challenges highlighted in Andy’s blog you might want to have a look at the following resources:

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