A year ago, almost to the day, our 85 year old aunt lost both her two much loved children; a son of 53 and a daughter of 61. They died within 36 hours of each other. Aunty J was already a widow. Her life, in her words, is now without purpose or meaning despite having one very close friend. She says she has aged 10 years in the last year and I don’t disagree.
Since this life changing event Aunty J has been severely depressed but also very lonely. She seems unable to spend any time on her own at home. It’s been hard to keep her occupied and have any sense of purpose. I have become her main carer.
But this blog isn’t really about Aunty J; it’s about the things I have learnt that I think I need to apply to my life. These are some of the things I have learnt:
Work as long as you can; this doesn’t necessarily mean do what you do now but find something purposeful to do and do it for as long as you can. It could be paid work but equally it could be volunteering.
Keep as wide a circle of friends as possible, don’t rely on one close friendship.
Have lots of hobbies but critically things you do with other people but also things that you can find joy in alone, at home.
Always be flexible and don’t fall into the trap of having a rigid routine where you do the same thing at the same time every day.
Read widely and extensively.
Keep in touch with church (or whatever this means for you) as there are always people there.
Eat well, eat a variety of food and enjoy different things (see also link to 4 above).
Embrace change and try new things in as many aspects of your life as you can.
Always wear clothes that are stylish and represent who you are – ignore fashion if it pleases you.
Grow things and enjoy the cycle of nature.
Move about – keep active – walk every day.
Learn how to use public transport – don’t get trapped at home by an inability to drive.
Cats make good companions and looking after them gives you purpose.
Hug people – physical human contact is very important
Please if you have any tips do share by leaving a comment below:
I know not everyone will be able to do these things but nearly everyone will be able to do some. Aunty J, as you may have guessed, hasn’t, and her life at 85 is less for it but we are making progress in building some sort of new life for her.
It may be that in writing this blog I am cursing myself; I have fingers, toes and legs crossed and am holding on to a piece of good solid wood, all for luck and against sod’s law. I hope nothing happens to derail me because I wrote this down!
I have spoken at events recently about ‘resilience’ and I have been pondering what it means. If resilience is important for people with long term conditions to have full lives, where they bounce back from inevitable setbacks, how can we help people to build resilience? or do some people just have it and others not?
One of the meanings of resilience is the ability of something to spring back into its original shape, an elasticity that helps things to retain their form. But I think this is unhelpful when thinking about health or indeed most aspects of life; life events, no matter how positive or negative they are, shape us as people and for many of us leave indelible marks. I think the definition that includes the word ‘adjustment’ is more helpful; after things happen to us, it is our ability to adjust and move on that makes us resilient.
Remember Weebles? Wobbling but not falling down? See also this brilliant blog from @betabetic about Resilience, Weebles and personal stones.
So, am I a resilient character? I think so. Having reflected, I think it is a learnt behaviour. I was a child of a broken home, although I still had a very happy childhood. The broken home part led to me taking up responsibilities probably beyond what you would expect of a 15 year old; I effectively ran the home and ended up moving out into rented accommodation at 17. I didn’t go on to do further study at 16, leaving school to earn money so I could completely support myself. My reflection is that my learnt behaviour, to be independent and self-sufficient, is an attitude that has continued into by Diabetes life. I have had a few curved balls thrown at me and I doubt that I have reached the point where no more can be lobbed, but I hope my resilience and ability to cope continue (keep those fingers crossed for me).
I am also as stoic as they come, even from Yorkshire. Stoicism is also an interesting word as it relates to endurance and acceptance, without complaint or emotion. I am not saying I don’t complain or get emotional, more that I seem to have a deep acceptance of life events. This leads me to a place where I can be more resilient; I adjust and move on.
So, has Diabetes caused me to face events and situations that require me to be able to adjust but keep focussed on positives and move on? Absolutely, my attitude continues to be that there are many worse things I could have, although it’s tricky and can be rubbish. I am alive and have a good life; I consider myself to be lucky.
So how can we help people to become resilient?
How we react when things happen for me is key. I once had my driving licence revoked due to my diabetes. It was a mistake and I did regain it but not for many, many weeks. I was also quite heavily pregnant and still working at a hospital 15 miles away from home. My attitude? Public transport is what I need to do and I quickly learnt how to manage and still get to work. The buses were OK and I learnt to read and gaze at the views as we went on the long tortuous journeys (bus routes are rarely direct). I can still get myself around on public transport unlike my 85-year-old aunt who has never been on a service bus and now can’t drive. I feel sure I would have my walking stick and umbrella and be waiting for the free Sainsbury’s bus – I developed a skill! She choses not to learn to use the buses and complains that she can’t get out and about like she could. Choosing public transport over going off sick or leaving work maybe isn’t a big deal but it demonstrates my attitude.
Electing to react in a positive way to an event is for me the crucial factor. I am not saying I don’t gnash my teeth and wail but I soon move on actively seeking a way of managing past the problem. I can be stroppy, though, as I hate people feeling sorry for me so people saying how terrible it is can sometimes get short sharp words (sorry!).
So we can actively encourage people to focus on finding a way forward. For me my resilience is about taking a very active stance – if something around my Diabetes management is causing real difficulties how can I deal with it?
Can I learn more about it? Can I change my behaviour or how do I get to a better place? How can I find a way forward?
Having an effective network of people who can help me solve problems is also important, despite my independence. I like to talk problems through and it helps if its people who understand. This is how the Diabetes Online Community (#DOC) is helpful to me, a small network of people where I have reasonably strong ties – comrades in arms! I can seek advice and support from these lovely people in addition to my own family and friends.
Creating peer relationships for people with LTCs might help some people, whether this be in person or online.
I like having things to look forward to and I feel this increases my resilience; setting goals, however small, helps me get past setbacks and put bad things that happen into an appropriate place in my life. I am a reasonably driven person and I always like to have something else in my life that can counter balance my health. Right now, for example, we are planning my husband’s 60th birthday party, we are determined to make it special and memorable and are having great fun doing so! It doesn’t have to be big grand goals that distract you (there are always cats and kittens).
So how can we help people to set goals and take positive action. What one thing each day will help them feel that they are in control?
I recently spoke to a group of Paediatricians who care for children with Diabetes and this made me reflect. It seems to me that we might want to protect young people and try to shield them from life events that challenge them but I think it is vital that they find out how they will cope and build and strengthen their personal resilience. Wrapping children in cotton wool when they have to face a lifetime of coping seems to me to be wrong.
There are of course other strategies I could use. I am not particularly good at looking after myself. I work too hard, rarely stopping and I’m not very good at relaxing. I think I need to learn these skills as I get older. I have tried mindfulness but I seem to be too busy to fit it in!! I need to practice more!
I found this information from the American Psychological Association to be very helpful when reflecting on my own resilience.
This picture was taken around the time I was diagnosed as having T1 Diabetes
Thank you to Anne for again letting me take up space in her blog.
My name is Liz Clough; you may recall a previous blog from me as a guest in Anne’s site in Aug 2016 called ‘Wondering if we have got it all wrong’ where I blogged about my experiences in the health system when I was diagnosed with breast cancer.
In the cancer world there has been quite a bit of publicity recently about a lady called Sophie Sabbage. Sophie got me reflecting again about my experiences and how cancer affects things.
Cancer permeates every aspect of your life but for me the fear was driven by my NHS care process; from the NHS letters dropping on the mat, to the text reminders. From saving the change from my everyday shopping in a tub for the pay and display carpark at the hospital, to writing a social engagement in my diary and noticing again a forthcoming appointment, scheduled in. From the overwhelming, trembling shakes and immediate urge to throw up in the waiting room, to staring lovingly into my families eyes and seeing the fear reflected back at me. From the doe-eyed look of sympathy and sorrow as results are shared with us, to the absence of any potential hope.
Searching for glimmers of hope that are, if you can find them presented as a by-product of the real reason we are here. I remember being told following the surgery to one breast that they could do the same to the other to re-balance the size. It didn’t have any impact at the time, I was too consumed, reeling from my (and my family’s) shock of the situation but, reflecting much later on my journals, I read into this that they must think I might live long enough to have that done.
Based on my experience and my individualised needs what would have served me better was some element of hope and a future.
Conversely I found hope and a focus on future in abundance across the range of my non NHS support. The significance and impact of living with fear is highly underestimated in our NHS system with little or nothing done to address it.
For me I believe receiving my results by post and then having a follow on Skype consultation in the comfort of my own home (clearly only possible where no physical examination required) would help to address much of the fear associated with attending clinics, sitting waiting in nervous anticipation as the clock ticks endlessly round, often past your allocated time – so much negative energy used up. Energy needs to be preserved for keeping well and enjoying life, for living well with cancer, not drained from us as part of the process.
Sophie Sabbage is so right (for me anyway) about getting sorted on the fear front. For anyone who has not read THE CANCER WHISPERER (either in the capacity of a health worker, patient or carer) I whole heartedly commend this book to you.
Thank you Sophie, I continue to work on it, for my family and I. With love Liz xxx
There is something that happens to you and the way you think when you reach middle age. I think it’s got something to do with your joints and the first few moments after getting out of your bed you feel stiff and its takes just a few minutes to limber up.
Then you start to see people you know dying. It is with a regret that you recognise you too are destined for the end game and that you have passed (and maybe wasted) more time than you have left.
That happened to me this year at 53.
Of course, I have compounding factors to consider; long term conditions that may mean I have a shorter spell here than some others and there is a realisation that this too is a done deal.
So, in the Summer, I decided it was time to act and that if I wanted to emulate Sir Muir Gray in his mission to #Sod60 and #Sod70, there was no better time to start than now, right now, this minute.
It was with this purpose in mind I started on trying to readjust my life just a little bit. The first thing I did was to start to lose weight and I am now 1 ½ stone lighter but still with a long way to go. The second and possibly more important was to start to exercise.
That’s how the hashtag #Anneswims started. I focussed on swimming or exercising in water twice each week and used Twitter as a virtual diary that I can look back on and see how much progress I have made. Twitter tells me I have made 10 entries into my #AnneSwims diary in the last month and it has been really motivating to add each entry as I have gone along, it’s become a routine, doing a blood glucose test, taking a picture and posting. NB learning for me – I can’t do a count of how many times I have used my hashtag as I didn’t register it, I didn’t know I needed to and Twitter doesn’t keep historic data forever 😦
But 2017 is a new year and time for a new approach to #sod53. So this year I have a new way to keep motivated. I have a new jar to fill with buttons, one each time I exercise. It’s a big jar, there is plenty of space so let’s see how full I can make it. The little tin next to it is full of buttons and was one of my Grandma’s button tins (I have no idea why she had a button tin with Sloane Square on it – I don’t think she ever left Yorkshire!).
So, here’s to a new year, not with changed resolution, with an extension of an existing one – so #Sod53 and to a great active 2017.
I do have some other resolutions for 2017; the first is to work with the very lovely peeps that are Victoria Betton and Roz Davies to somehow find a way to deliver #PDDigital17 and to drive strong clinical leadership more deeply into the culture at NHS Digital. These things will be fun and I am very much looking forward to 2017.
Happy New Year everyone – I hope you achieve your ambitions while staying happy and well.
PS Thanks to Sir Muir Gray for the inspiration and I hope he forgives me for #Sod53
Postscript 3rd Jan:
The first button is in the jar and look at my new button tin thanks to Auntie June
For me ‘frugal’ has a very personal meaning. I was brought up in a frugal household; rarely did we throw anything away. Recycling was an art; buttons cut off items of clothes that were worn out, then the cloth used for clippy rugs. Shirt collars and cuffs turned and boots and shoes re-heeled. Post war habits lived through my parents and grandparents.
Some of those habits have persisted into my adult life and my husband has much stronger frugal habits than I. I delight in nice jam jars that I can reuse for jam and marmalade and I increasingly recycle ribbon from parcels and paper, if I consider it special. I find myself looking at buttons as having potential. I sometimes reflect that I am turning into my Mum or Grandma!
My husband has a garage full of ‘stuff’. The pleasure he gets when we have a practical problem to solve and he says ‘ah, I have just the thing for that!’ and off he goes to return with a surprising solution, usually something I would have thrown away, something that we can repurpose.
So, what is frugal innovation?
‘Through minimising the use of resources in development, production and delivery, or by leveraging them in new ways, frugal innovation results in dramatically lower-cost products and services. Successful frugal innovations are not only low cost, but outperform the alternative, and can be made available at large scale. Often, but not always, frugal innovations have an explicitly social mission.’
So some of the aims of frugal innovation are the same as my parents or my husband; that is to use resources wisely and in unexpected ways for solutions that work well. Perhaps it is the very scarcity of resources that makes us more creative and focus on something unexpected that sorts out a problem.
I am really looking forward to the debate tomorrow for #PDDigital16 – this is the motion:
This house believes frugal innovation has the potential to create better solutions to citizen challenges in health and care than traditionally designed digital technologies
The debate will be streamed live so why not listen in to see if you can learn more about frugal innovation (follow #PDDigital16 for more information) and meanwhile here is a short video from RSA with Charles Leadbeater to whet your appetite! How can we use the limitless opportunity we have to connect, to create solutions with scarce resources, for social purpose?
I had a developer say to me recently ‘It’s OK, we do lots of user research where we test our products and how well they work!’ – he was clearly proud of his product and through this research thought they were very well connected to their users. Clearly their plan couldn’t fail? Or could it?
I was less impressed. I was unclear if they understood what the issue was that they were trying to resolve and had made a huge leap to creating a solution that they were then going on to test. Their intentions were honest and good but I wonder if we can do better if we understand what it is products need to ‘do’ to help in the health system.
I also recently read this blog from Mike Fritz at Userzoom that eloquently describes the issue; fundamentally you can create a highly usable (probably very beautiful) application but it will possibly never get used, unless you understand utility.
Having Type 1 diabetes means I understand utility very well. There are hundreds of digital tools/apps available to me, a simple search in the apple app store shows the variety; carbohydrate counters, games, coaching, glucose monitoring. But the truth is, I only use one consistently and that’s an App called Carbs and Cals. It has a clear utility for me; it easily helps me to identify the carbohydrate content of food just by looking at things – no scales, just looking.
I think I am a reasonably activated patient, so why is it that I only use one app and does that make me different to everyone else? I think that the research is starting to show that most of us only use 5 apps that are not native to our device and if you think about your own use (Twitter, Instagram, Facebook, Whatsapp) you are likely not to have too much room in your smartphone life for much more than a very special few apps. Despite this the health system continues to see Apps as a potential solution to the challenges faced by health and care systems.
Potentially it’s a classic case of hitting the target but missing the point.
So how could we reverse this? How can we help to make sure technology offers valid usable utility solutions? I believe that utility is the key not beauty; we will tolerate poorer user interfaces to achieve beneficial utility. It’s about what it does to support and help people not whether it was merely a great idea in the mind of someone or has a very smart user interface. The best example for me of hitting the target but missing the point are Apps that ‘help’ people with Diabetes to monitor their blood glucose but require extra entry of information into a separate and standalone app… in the days of interoperable devices why would you bother? No one I know likes them or uses them in a sustained way. Their utility does not stack up.
So, if we are to capitalise on technology how might we do it, how might we find the pieces of utility that really help?
The answer for me lies in where the ideas and solutions arise. If we look to citizens and patients who have real skin in the game they will know where technology has real utility. From this, great designers and developers can collaborate with citizens and patients to create high utility AND high usability solutions. My view is that this type of ideas generation and co-production has the potential to create innovative scalable solutions. But only if we stop thinking the system knows best and properly tap into the ideas and creative thinking that sits behind People Drive Digital. Co-production in the digital development space could have real potential to help but it requires more working together to identify areas of potential utility and then combine these with fantastic design and development. We have the skills and talent – we just need more conversations.
I don’t like a fuss about anything much. I dislike being the centre of attention at birthdays and parties; its not that I don’t like them, more I like to be part of a bigger thing not at the centre of something. But when it comes to my Diabetes I had an insight this week that my inherited stoic approach to my personal health might not be for the best.
There is no doubt in my mind Diabetes is tricky every single day. I can’t do many things without thinking first: a latte with a friend (how much milk and how much carbohydrate), a long walk (where are those pesky glucose tablets and where shall I carry them) a night away (do I really need to take all this stuff?), and that’s just the tip of the iceberg.
Through personal preference I don’t talk about this all very much. I have to do it, not you, and why would you want the boring details?
But of course this behaviour masks what is going on and renders my Diabetes, a big part of my way of life, invisible.
Does that matter? Sometimes it does, sometimes, knowing these things about me is helpful, it might explain my tubing poking out of the top of my tee-shirt or my seemingly sudden lack of focus, or my trying to cram biscuits in to my mouth. Not very glamorous is it really?
So what is it that I feel inhibits me? Is it about me or is it about the environment in which we live? Sadly, its about both. I am not predisposed to share and people are interested in differences but not always for the right reasons. Responses like: ‘Should you be swimming?’, ‘Shouldn’t you be at the Medical Aquafit not the normal one?’, ‘Should you be eating that?’ and ‘Did you really have a baby?’ are irritating narratives in my life.
My contact with more people with Type 1 via social media has encouraged me to be more open but I still do so with a feeling of unease.
So why do I think it matters? I think it matters because it is really hard. Much as I want to be seen as a strong woman who copes with really well with her life, sometimes, sometimes, it stinks. And if I don’t tell you, how will you know? Because when life stinks its always helpful to have the kindness of people. So if you know someone like me, empathy but not sympathy is the best answer. I don’t want sympathy but I would like people to know how hard it is! This week has been a hard week. High readings that make you feel frankly shocking for no perceivable reason other than that it’s Diabetes.
So don’t judge me if you see me in the supermarket cramming food that hasn’t been paid for yet into my mouth. The choices are stark…. eat or pass out on the floor!
People with Diabetes are not alone in having an invisible disability. Watch this great video by Pam Relph for some insight into invisible disability and if you are on Twitter have a look at #morethanmeetstheeye. Its an old hashtag but worth a look through.
PS Why do I still feel whingy writing this post? I hate feeling whingy!
Each of us has the power to make change happen…. or at least that’s how we look at it. Small acts together can make big changes and if we volunteer to do them they have a great sticking power.
So what could we change? We embrace digital in most aspects of our lives. We talk to our family and friends, shop, arrange our travel, find our recipes for meal planning and order taxis. How do you feel when your battery runs down on your phone? Disconnected? Unable to do stuff ? Frustrated? The tools we use to live our modern lives are woven through them like invisible strands.
Yet in healthcare it often feels like a history tour; we are transported back in time. The Nuffield Trust report published earlier this year tells us on average NHS organisations are a decade behind. Think of all the opportunity we are missing to deliver better care!
It’s easy to overlook existing digital tools as part of new ways of doing things in health and care; maybe because in everyday life for many of us it is so invisible and integrated, unless it goes wrong we pay it little attention – so how do we change that and make it a more obvious part of the future? I don’t believe it’s about politicians or indeed policy it’s about people and that’s you and me.
How about if everyone made a pledge to do something ‘digital’ would that be a start? Just think what might happen if we then also encouraged our colleagues and family and friends to do the same. The leadership of change often takes a group of focused people who create a tipping point that starts a process of change. It often takes ‘doing’ rather than ‘talking’ so perhaps we could start some of the ‘doing’?
Simple acts such as all of us committing to learn a new digital skill, for example, tackling that tricky process online that you have been avoiding, or learning how to order your own repeat prescriptions online. You could also do something digital to improve your own health such as download a new app to check your weight, ask for access to your GP record or use the NHS Choices Couch to 5K App – or persuade your partner to do the same. Or it could be helping your parents to work out how to get access to their health record with their GP. If you work in health, find out what is happening around digital and commit to help and support the substantial changes we need to make. Go and meet the people who work in your information department or the technology team as part of a #RCT – ask them what they do and how they can help you to deliver care. Look at how you can use the technology you already have to contribute to doing things differently – perhaps show patients resources online that they can look at in their own time or link them to online peer networks. What would you expect if you were a patient in 2016? If you don’t work in health but you are a patient, carer or service user ask the people who help you how digital might be able to help you….
In the NHS we depend on incredible people and there are 1.2 million of us. Just imagine the impact we could make with a million digital pledges. The fact is the staff in the NHS are the best resource we have; if we all mobilised behind the digital age it would make a real difference.
If you think this is useless/pointless have a look and be inspired by the work of the Tinder Foundation and some of the digital heros in the video:
If you want to make a digital pledge tell us about it on Twitter using #FabDigital and register your pledge on the FAB Change Day App:
A modern NHS should be digital – what part can you play?
A guest blog from a friend. Its a long one, much longer than my usual, but worth a read. For health care staff listen carefully. For those who have got caught in the care system read to see helpful insights and perhaps feel less alone:
Thank you to Anne for inviting me to blog as a guest. I write this blog with more than a little encouragement from several people but in particular from Anne. Anne tells me my experience has changed me and there is value in sharing this change of understanding with others. My blog is written to share my experience from my perspective, the intention is to support understanding and learning. Some of my experience did not match up to my expectations but it is not my intention to cause discomfort or harm to those involved I wish to create learning and change. I have made the decision to remain anonymous in order to maintain the anonymity of my service providers.
So here is my story. How does it feel to have your whole belief system questioned? No, not questioned, that’s way too mild a description – wiped out. Yes, wiped out. Everything I knew about myself, in particular my 28 years of dedication to the nursing profession, suddenly no longer served me. An unexpected cancer diagnosis turned my world upside down. I had a pretty standard life up to then; busy daughter, sister, wife, mum and nurse. I was proud of what I had achieved and felt successful in my career having moved into a more senior position.
At the outset of my career, in the acute setting, my work was aligned to the medical model. I was unaware of any other way. This approach influenced me not only professionally but also as a person; it resulted in me favouring scientific approaches and controlled interventions. This came to fruition through the delivery of my 2 children by caesarean section, both for legitimate medical reasons but inside I was hoping this would be the method of delivery.
Seven years into my career I moved into the community, working in a very different model. A model which sought to educate individuals and develop attitudes which enabled them to take responsibility for their own wellbeing. The focus changed from illness to health and overall wellbeing. It was my first exposure to the term ‘holistic’.
My career unfolded to promote prevention and empowerment. I have been fortunate to work for much of my time with children and young people. For me, this has created unique opportunities for me to learn how to work in the context of other’s lives. To work to understand what can be the best for that young person in their current circumstances, to see beyond the “patient” and deliver what I considered to be holistic care.
Throughout my time in nursing I have been supported to learn and develop through a range of approaches. The most significant include being exposed to a range of models of health and well-being; working in partnership with colleagues from education. I have learnt about their culture being introduced to motivational interviewing techniques and the maximising independence agenda and participating in an intensive leadership fellowship where I gained an understanding of difference and learnt to value it as well as insight into system leadership. I value and have gained immensely from all opportunities to learn – by far my biggest learning has been through my cancer diagnosis.
Everything I expected a “patient” experience to be seemed absent from my pathway. I was in a place of terror, facing huge overwhelming fear. Facing my own mortality. Wanting to understand every detail. Wanting to question every action. All of a sudden the “patient” was more important than they had ever been. The “patient” was ME, me the daughter, sister, wife, mum and nurse. It felt like cancer was taking over, I was losing my identity. My whole being was disintegrating. I longed to feel the familiarity of my pre-cancer life, but it was not to be. I had a brief encounter with thoughts of suicide until I recognised that it was in fact death I was trying to run from. I desperately reached out to everyone I knew, relatives, colleagues, non NHS practitioners and friends, to whom I am extremely grateful. They have all helped me understand, process, express and work out what I needed to do. They have helped me to represent myself, gain self-belief and understand my self-worth. Ironically the bread and butter of my work with young people.
One of the huge gaps for me in the cancer pathway was/is emotional support. The journey is a very lonely one and the time available in the NHS to offer any emotional support is limited. I developed my own network. I accessed charitable support, luckily for me, one particular provision is commissioned through NHS funds in my area. In my experience The Haven Breast Cancer Charity and The Penny Brohn Centre fulfil some of needs left unaddressed through the cancer pathway. I started to build a team of therapists around me including non NHS practitioners. This was soon after I came to appreciate the NHS pathway only had the capacity to manage symptoms, deal with the lump and any roaming cells. My understanding of holistic was so much broader than this. Holistic in a physical sense, holistic in an emotional and spiritual sense, holistic in a nutritional sense and holistic in the context of my whole life.
I am very grateful for aspects of the NHS pathway to help sort out what the problem was, and manage the symptoms, in most cases the staff did their very best to give me what the system deems as the right experience. It came as a surprise that this wasn’t what I wanted or needed. I wanted an individualised approach based on me and the system doesn’t easily allow for deviation from a standard. The targets don’t allow it. I now appreciate that targets create inflexibility which seems very ironic when the focus of NHS care is promoted as individualised.
Some of the challenges/learning I have identified:
Having a strong belief in the NHS, being proud of my role and contributions and now feeling conflict with this.
Not being informed of any risks associated with any of the investigations it was assumed I would accept.
Waiting nearly 2 hours past my appointment time to go into the consultation to receive my results.
Being sat down immediately after becoming aware I had cancer to spend what seemed like an age having an anatomy and physiology lesson on the breast. My brain was in total shock and I struggled to concentrate. I sat behind a fixed mask behaving as I thought I should. I wanted to run, run and run and hug my children hard.
Following my results having to walk back towards all the patients in the waiting room waiting to go in. Feeling so vulnerable and everyone’s eyes focussing my way. I wished I could leave by the fire exit.
Being denied the opportunity to attend the discussion of my case at the multi disciplinary team meeting despite asking. “No decision about me without me”. Being told this was due to confidentiality and time. When I asked who would represent my concerns and expectations, being told the nurse would advocate on my behalf. Not understanding how she could do that when the final reports from investigations were being presented at the meeting and, therefore, I wouldn’t have seen them. I wasn’t sure what my thoughts were without hearing the options so I found it difficult to understand how she could represent me.
Being pressured to conform to the target driven time line set by the government. In fact being phoned and asked to attend a consultation with the nurse the same day (Friday) as she called. In response to this I asked if I could attend first thing on the Monday so my husband could be present. The response was that the nurse would have to check with the ‘tracking lady’ (who managed the targets) before agreeing to it, as I might be breaching ‘my timeline’!
Not ever hearing any words that gave positivity or hope in my NHS appointments. Feeling doomed.
Feeling that some of the different departments seem disconnected from my overall pathway, just a process to produce a report.
Being expected to have surgery without any pre-surgery consultation with the chap who holds the knife.
Receiving an automated text “don’t forget to attend your appt on….” At this point I wasn’t yet aware what my surgery would be, let alone when it would be, and this text turned out to be the reminder for my surgery.
Attending 2 different departments, both needing to insert needles into veins for different reasons. Wondering why this couldn’t all be done in one insertion to half the infection risk.
Being supported to develop enough self-worth to realise I was so important that I could take control. Up to that point I had gone with the flow and felt I had to do as I was told.
Gaining enough confidence to move provider service. My natural instinct is to be grateful for what you are given and not question it.
Being told vitamins and supplements are insignificant. And then recently learning that Public Health England now recommend one of them.
Researching information beyond NICE. Wanting to seek information from people who had lived this kind of experience. Understand it from the horse’s mouth not just the worker. You might like to check out the list below for just a few examples of the information I explored
Developing a realisation that my body is my own. And I have the right to decide what happens to it. I agreed to have a wide local excision of the lump.
Asking for copies of all my reports and results so I could process the information in line with my capacity to digest it.
Feeling completely exhausted with researching and processing information because I believe there is more to disease and wellness than drug based statistics.
Feeling intuitively that damaging my immune system through chemotherapy was not the right choice at this time for me. This being reinforced when I asked how much benefit going through chemo would add. I was told that the statistical prediction through the online tool was that chemo would give a 4.6% increased survival rate over 5 years. Wondering why we (the NHS) are prescribing such expensive and toxic courses of treatment based on such low improved outcomes.
Gaining an understanding that the impact of stress on the function of your body is key to any potential for recovery. Understanding the evidence in relation to links between emotional and physical wellbeing. Actively utilising strategies to minimise negative thoughts and stress.
Receiving letters from the consultants expressing concern at me not taking active treatment, further filling me with fear and stress.
An appreciation that a significant part of my contact with the NHS as “patient” creates me stress and anxiety from sitting in the waiting room with people clearly much worse off than myself, to the challenges I felt trying to represent myself in consultations. It is a relief to only have to attend once a year now.
Feeling like my contribution to the whole scenario was gate crashing my pathway.
Sensing an unintentional arrogance in relation to defining my care plan.
Sensing an unintentional arrogance in relation to believing the NHS team was the only valid contribution to my care.
Having my “holistic” approach to my care unintentionally undermined.
Being bombarded with “think differently” messages in my role and continuing professional development. “Thinking differently” being seen as holding the potential to transform the NHS into something sustainable.
Having “question everything” engrained through your very being as part of your professional development. Being encouraged to question why systems operate the way they do, why care is presented as it is, whether we can do anything differently to improve efficiency, safety and/or experience.
Being told your only method of monitoring is mammogram, when it only identified less than half the original tumour (as did MRI and USS). Appreciating the evidence that mammograms are not without risk, but being told there is no evidence they cause harm when I question having one.
Appreciating that no one method of monitoring/screening is 100% effective. Learning of many different forms of monitoring, most not acknowledged by the NHS.
Learning there is a Political agenda which may not always be in the best interests of individuals.
Being declined a less risky/damaging USS as follow up because it doesn’t fit with the NICE pathway.
Learning how old the NHS Cancer Act is. Considering when we produce academic work anything 3-5 years old is considered old unless highly significant. The Cancer Act is dated 1939.
Learning of chemo sensitivity testing for breast cancer. At a cost of £3k individuals can choose to have the sensitivity of their tumour to different chemotherapies tested. The outcome can show some chemotherapies to be more appropriate than others, in some cases it shows that chemotherapy adds no therapeutic value. As a patient I want to know this information to help me make a self-identified choice. I would prefer to avoid the physical and emotional trauma of chemo given a choice. The NHS claim to require cost savings and efficiencies as demand is out weighing capacity. As an NHS worker I want to know why we don’t utilise this test prior to prescribing chemotherapy, to save costs on administering when it may add no therapeutic value and in fact may cause harm.
Acknowledging a stark contrast in experience at NHS appointments and non-mainstream support. Gaining feelings of hope, positivity, human connection, control, progress, opportunities and being supported and growing as a whole person from the non-mainstream connections. Looking forward to these appointments which ranged from Reiki, Spiritual Healing, Homeopathy, Occupational Health Counselling, Nutritional Support, Chinese Medicine, energy healing, Yoga and Spiritual Work. All of which are entirely individualised and underpinned by building a relationship and connection with the therapist. This aligned to my values and expectations.
Gaining an experiential appreciation that chronic illness is very different from acute where often working with cause and effect supports achieving an excellent outcome. Chronic illness is so much more complex and cannot be effectively addressed with the same approach.
As parting words being told that “in my experience people who take an alternative route do not have good outcomes” without any clarification of what defines a good outcome. Feeling the treatment I had undergone was not worthy.
Appreciating the NHS team involved in my surgery. They did a fantastic job in relation to the aspects of my holistic plan that they had the skills, experience and capacity to deliver. They were respectful, kind and caring within the context of their training and pathways.
Reinforcement of my belief that life is about art as well as science, process as well as product and quality as well as quantity.
Living out the words presented to me at the start of my leadership fellowship “anyone who is not me is different” and appreciating the impact that difference has on experience and outcome.
Wondering if we have got it all wrong?
So when, during my nurse training in 1986, I learnt that health was not merely the absence of disease little did I appreciate the significance this would hold for me. I continue to work through the conflict my experience has created. I am a keen ambassador of the NHS, particularly in acute and emergency care I feel we deliver outstanding outcomes. In relation to chronic illness though I feel we have much to learn and should open our hearts and minds to self-identified needs and working in partnership with a range of approaches which support living well, be they medical or alternative. Self-identified benefit is of equal importance to statistical outcomes when I am the patient.
I would like to thank each individual (of which there are too many to list) who has played a part in supporting me since my cancer diagnosis. I value every one of you for the unique part you play in my life.
By Ministry of Information Photo Division Photographer [Public domain], via Wikimedia Commons
My husband often says to me ‘but what IS nursing?’. To be honest I struggle to answer his question without distilling my profession down to a set of tasks that don’t really get to the heart of it and I think that is an issue – we don’t actually know how to properly articulate what we do.
This poses a challenge when you are trying to implement electronic record systems to support the practice of nursing. Electronic systems respond well to lists and tables, check boxes and drop down lists. This is why electronic record systems meet our needs in terms of risk assessment and listing things but perhaps are less well able to respond to the more complex and less visible work of nurses.
Traditionally software systems are created based on what could be called ‘user requirements’. But if the users can’t clearly articulate what they need, then the developers will struggle to respond. In my experience nurses can describe a risk assessment form and probably paper forms they use but really struggle to describe the more complex aspects of what they do. The result? System developers develop task based record systems that drive nurses towards the less complex work and fail to record the more complex and less visible work of nurses.
The work by Davina Allen – The invisible work of nurses: hospitals, organisation and healthcare (2014) – should start us to think more about how we describe the complex work we do but it’s a challenging conversation – complex and abstract and we are often too busy to engage. Allen says: ‘Nurses, it is argued, can be understood as focal actors in health systems and through myriad processes of ‘translational mobilisation’ sustain the networks through which care is organised.’
Perhaps it’s time to look again at the models of nursing we build systems on. Nursing care planning doesn’t do it for me, again it drives us to simplify and describe what we do merely as a set of tasks. Perhaps natural language processing is likely to offer more to nurses than we might think and we should engage with the developers of these type of solutions and resist the drive towards solutions that push us towards over simplification.
I would argue that not everything we do can be entered as structured text of check boxes. If we do this pushes us towards task based thinking. We need better than this if we are to really recognise what nursing really is and build the electronic record systems nurses deserve.
Allen, Davina Ann 2014. The invisible work of nurses: hospitals, organisation and healthcare. New York: Routledge.