Endings, Beginnings and Being Scared


ward sister

It’s a big deal.  I have worked in the NHS since 31st January 1983, when I first started my nurse training.  I have also been in a salaried role since I was 16 years old.  I have never had a sabbatical and only took 14 weeks off work when I had my son, returning and expressing milk everyday on the midwifery unit at the hospital where I worked so I could continue to give my son breast milk.  I have worked hard, chosen difficult roles and never been afraid to volunteer or do extra.

I have some regrets.  It was impossible to stay at the bedside back then and influence things at a more senior level.  I am of the ‘Management Generation’, where nurses moved in to management if they wanted to be involved in a wider range of things and, as I saw it, have an influence on how things were ‘done’ for patients.  There are lots of my generation like this.  It’s sad because we are castigated for not staying at the bedside and, as I have said in blogs previously, accused of selling our souls.  I was ambitious but all I ever wanted to do was make the biggest difference I could.  I also know I was a good bedside nurse, because patients often told me.

best way to prediuct the future

I hope I have made some difference.  In the last three decades I have always done new jobs; a complaints manager before there were any, setting up NHS Direct, moving into nursing/clinical informatics.  That’s one of the reasons its been hard; being one of the first is often harder than following someone else.  I have given as much support and help to others as I can, even when it was difficult.

Now those times are finished, and I have set myself adrift.

I no longer have a ‘proper’ job and for someone like me that is a big deal.  I think I probably have around 10 more years of career left, at 55 that seems reasonable. I am fed up of being a slave to a job, although I have been very lucky in the roles I have had.  My ex-boss says I had earned autonomy (I think he means he never really knew where I was or what I was doing!!) but clearly, I still needed to deliver what the organisation was paying me to do.  I loved my job, but the timing was right to go; plus, its someone else’s turn to do something with the role.  I don’t want to be the person everyone wishes would get out of the way!

So, I am forging out a new path and I am discovering the things that seem to be the things that make me ‘tick’.  I want to rediscover my voice and use it well. I am increasingly interested in the experience of patients and how we make sure their voices are heard, especially in the digital space.  I haven’t finished in informatics yet where, in particular, I would like to do something about the gender divide.  Its better than it was 20 years ago but I still feel that we have some way to go.

It appears that I need a cause, something to drive me on, so that’s what I am focusing on doing – working out what makes me tick.

I will be doing some work to keep the wolves at bay and feed my family.  As is usual with me though its far from straight forward.  So the trendy way of describing this is a portfolio career.

I will do a small amount of independent work.

I have also decided to join a tiny (a small number of staff compared to NHS Digital) fledgling social enterprise called Ethical Healthcare Consulting.  Why would I want to take huge sums of money from the NHS, working as a consultant? The NHS that has fed me, paid for my house and educated me in the last decades?  This way, as part of a community interest company we can aim to try to put something back and to do some good, whilst bringing our expertise back to the NHS and without making huge profits.  I see us as sitting just outside and alongside the NHS in values and ambitions.

I will also be working with the glorious mHabitat team and trying to help the Leeds Care Record team to deliver the Person Held Record WITH the people of Leeds.

What else, I am not so sure.  The diary isn’t full but that is perhaps good for now.  There is a house to reclaim as mine, new chickens to bring to the garden.  There are books to read and blogs to write.  I have never had a greenhouse and I want to grow tomatoes and blooms like my Granddad did.

DSCN0244

Exciting, I guess.  But bloomin scary too!  Wish me luck!

Advertisements

Indelible marks for #70nursebloggers


After 34 years I can still remember her. Why is it that some people we care for seem to make an indelible mark on our memory?

She was the wife of a patient. I worked in Scarborough so lots of older people came on holiday, lots and lots of them; seeking sunshine, the Spa and the long line of  slot machines, ice cream and bingo on the front. They came in droves when the sun came out, despite the continued chill of the North Sea. Of course some of them became unwell.

He had chest pain. An older gentleman. He was tall, upright and smart.

She in contrast was tiny, like a little bird. I can’t remember where she came from but she had a strong accent, possibly Eastern European. She seemed very exotic.

I was a nearly qualified third year student, close to my finals and, as a result, was allowed to work on the three bedded coronary care unit that was part of the male medical ward.

I was always wary of getting too close to families but she was all alone. No family nearby. No other visitors but her. It was before open visiting but we used to let her come and go.

She seemed to take a shine to me. She used to chat ten to the dozen and sometimes I just couldn’t keep up.

Eventually their hotel or b&b booking must have finished because she moved into a room we had for relatives. She asked me daily to go and have tea with her. She wanted to read my tea leaves! I wasn’t sure about this at all!

Eventually I relented and we had tea. She tipped my china tea cup up and looked inside.

She said: I see a place, it’s name starts with ‘L’, I can see money, not riches but enough. She looked up at me, with pale blue eyes and said I can see a tall dark stranger and you will marry him within the year.  I thought she was so sweet; I hugged her and went off to my early shift.  I also thought she was a little bit strange and had a little laugh to myself!

Eventually they went home together. He recovered and I hope he did well.

The other girls had quite a laugh at her predictions. I had no boyfriend and what place started with an ‘L’?

18 months later, I was married to my now husband and living in a little tiny house – 10 Leeds Road.  I smile now. Perhaps my memory has gone awry!

One of the best things about nursing are those people we are lucky enough to meet along the way. We are part of some of the most difficult parts of their lives and we must leave our own marks on their memories but they leave their indelible marks on us too.

Sent from my iPad

Are you digitally ready?


The essence of the session I presented at #NIPEC18 today

Are you digitally ready?  I am hoping I am!

Maybe you are expecting a technical presentation; this is not that.  That’s because I actually believe that this whole agenda is about people.  Its not about a list of technical capabilities – its about how people respond to technology and its about everyone in this room, so how do you know if you are digitally ready?

First of all, for context, I would like to reflect back.

Its 1983 and I am a fresh faced student nurse. Much of the technology we have now didn’t even seem possible then.  We had no mobile phones and as a patient I was boiling my insulin syringe in a pan in the kitchen.

Over the decades since then I have assimilated technology into both my professional and my personal life, as I am sure you have too.

I have had no training in any of these things but I bank online, I order my meds online, I look loads up on google, I have an insulin pump and a Continuous Glucose Monitor.  I love the connections I gain on social media and I use this in both my social and professional life.

I feel I am digitally ready in many senses.

But what is it exactly that makes me so?

Here are the 5 characteristics that I think make me digitally ready:

The first is that I am change positive; that is I have a positive professional orientation towards change, seeing it as an opportunity rather than something to be avoided.  I like doing novel things.  I was the first complaints manager at our Trust, I was part of the team that set up NHS Direct, a nurse led telephone triage service and I think was one of the early nurses to work in an informatics role.  I experiment (safely of course) all the time, like I am experimenting today with you, presenting without slides.  You will have to let me know how it goes!

For me being change ready means exactly that, prepared to try new things, experiment and play.

I believe that all nurses need to be change positive as nursing as its taught today is unlikely to be the nursing of the future.  The pace of change is ramping up and technology is a large part of that, for example genomics and personalised medicine is likely to be come a reality in my lifetime.

I have already seen significant professional change. I used to be a staff nurse on a cadiology ward.  The only way we could do surgery on someone’s lungs was a large incision in someone’s chest.  It took days for them to recover.  It was painful. Now, today they can do this type of surgery using keyhole surgery. Think of the massive difference it makes.  It improves recovery but just think about the changes it makes to caring for these people!  It shifts the focus for nursing too.  And I predict it will be robotics next.

Being change ready is a good life skill as well as a professional skill too!

The second trait is Curiosity, when I mentor people I always advise them to remain curious.

Curiosity drives progress.  If we are not interested in ‘what if’ then things will always stay the same.

Curious people can be intimidating though – they challenge the status quo and make people feel uncomfortable.  I have often asked developers difficult questions about the art of the possible and hopefully driven better outcomes for patients as a result.  Its part of being able to see a wider perspective and to be able to see how technology and data can be used to a fuller strategic perspective.

So what am I currently curious about?  If we want to care for more people at home how can we lever technology to help?  I visited a brilliant care home near Coventry last week where these are using noise detectors in a large home to help to identify when things happen at night.  This increases rather than decreases privacy as it prevents the night staff having to actually go in to rooms at night for checks which in turn frees them up to support people who don’t sleep and focus on their ‘Wide awake club’ meaning care overall improves (and falls have reduced too).  I am interested in technology like Alexa and exploring how we can use it with patients.  Artificial intelligence too……. I could go on…… technology is a rich seam of interesting stuff for a curious person.

Curious people often have great imagination too and can describe how things might be, having conversations, visioning, and leading strategic change.

The third trait is a relentless focus on improvement.

I care deeply about the experience of people we care for, their carers and families.  This is fed from my own long term condition but everyone has the potential to empathise.

Sometimes the status quo is fine when you are on the right side of the service.  But it might be less so when you or your loved ones are unwell.  It changes the dynamic and you suddenly have what I call ‘real skin in the game’.

An example:

This week I received a letter from my GP.  It pointed out that I have a prescription for pre-filled insulin pens but I have no prescription for needles and it enclosed a  leaflet on how to give injections.  It concluded that they had set up an prescription for me to have needles.

What they failed to do was check my record.

The data they hold about me should have told them that I have an insulin pump.  I only use pens as a back up and rarely use them.  I have a box of 100s of needles prescribed 10 years ago that I have yet to use.

If the people focused hard on improvement using data they would have realised a number of things:

I am a pump user so don’t need many needles

I have had diabetes since 1979 and maybe sending me a leaflet about giving injections was slightly patronising (I suspect I have given more injections than the practice nurse).

I think using data is an important part of improvement science.  But use it well. Focus on outcomes and do proper PDSA cycles.

I would love to know what outcome they expected when they sent me the letter.

Improving my injection technique might be the aim and I am grateful for that but they need to use the data in a better way.

Data is the lifeblood of improvement science.

If they wanted to make things better what outcome are they measuring? And how will they judge if they have made a difference.

Nurses who are digitally ready focus on service improvement informed by data!  I can’t stress strongly enough that a digital ready nurse understands the value of data and the contribution it makes to better outcomes.

My fourth point is resilience.  Its quite a trendy word right now so what exactly do I mean?

Resilient people keep trying.  They are bouncy and in this instance keep advocating for the technology no matter how many times they are shouted down or doors slammed in their faces. When you innovate using technology it doesn’t always go well but you have to keep adjusting, reframing until you get the best outcomes.

Its OK to say ‘That didn’t work did it?  Now how can we try to make it better?’  It takes a particular tenacity and resilience to safely fail and keep trying.  It’s a mind set.  I suppose another word for this might be an optimistic mindset.

I honestly think that technology and data create a great opportunity to make the lives of patients and nurses better.  But it’s a journey. Its not a one off.  It takes hard work, as an ongoing endless journey.

I have been in this space for 17 years and I have often felt like I was talking to myself.

Things are changing but digital nurses need to not fall over at the first hurdle but believe data and technology CAN make things better.

Finally trait five!

Networking and learning from each other.

I believe in stealing other peoples good ideas and building on them, if it improves care.  I don’t mean stealing patents, and those type of ideas, but I do mean the sort of mentality that looks around to see what other people are doing to see what you can learn!

Social media is one way of doing this.  Digital in this sense has created a whole new way of learning and communicating across the world.

Networks are a fantastic way to feed your curious traits, or your creative skills.  I urge you to connect and look around.  Are you well connected?  Do you have fantastic networks?

I am lucky that I am often these days asked to judge awards.  It shocks me how often nurses describe their projects to us and see them as unique, special – when in fact the trust in the next county or in NI or Scotland or wherever, are doing the same thing better!  Just think of the potential of networks when they are cumulative for the development of ideas.

Networks are generous spaces; if you don’t believe me take a look at the Fab NHS Stuff site where people are generously sharing their ideas.

So, finally – why do I think I might be digitally ready?

The five characteristics:

I am change positive, curious and relentlessly focussed on improving the experience of service users and importantly outcomes.  I am resilient, prepared to try new things and learn from others.

How are you digitally ready?

curiosity and my cat 🙂

#LanguageMatters


By Rosie Walker, Successful Diabetes and Anne.

DiabetesWe have both attended diabetes professional conferences and reflected on the language used about diabetes, for example, self-care is often labelled with words like ‘compliance’, patients are ‘suffering from diabetes’ and ‘poor’ is contrasted with ‘good’ control. These words carry a degree of stigma, or at the very least affect how people interact with those of us who have diabetes.   I have also blogged previously about the use of labels and stigma (check out #LabelsR4JamJars).

In other countries, most notably Australia, there has been a push to change the way language is used and Diabetes Australia have led the way in trying to eradicate words that are unhelpful when supporting people to live with diabetes and suggesting others. Their position statement ‘A new language for diabetes’ was drawn up by an eminent working group including clinicians, psychologists and of course, people living with diabetes. It is the basis for many events and presentations which quite literally ‘spread the word’ about language awareness and use in diabetes care. One such presentation was recently at the American Diabetes Association 2017 meeting in San Diego, where it was proposed that the USA might develop its own statement.

Inspired by attending that workshop and/or hearing about it through Australian diabetes advocate and blogger, Renza Scibilia, ourselves and Dr Partha Kar, Associate National Clinical Director for Diabetes in England, have decided to do something about this in the UK; working with people with diabetes, and also professionals and voluntary sector organisations, to create a UK statement that raises awareness of and promotes the best use of language in relation to diabetes and people living with it.

To start us off, we would like to hear your views:

What words or phrases do you think should be discouraged from use in referring to people living with diabetes, the management of their condition and/or diabetes care generally? Perhaps you could give us a list of your ‘top 5’ recommendations with alternatives?

To help you get started here is the Australian position statement

Please post your comments in the comments box below (if you would like to remain anonymous please say so in your comment and I will not post it openly on this site but will add your views to the debate).  You can also tweet us @anniecoops @successdiabetes using #Diabeteswords or #languagematters, by the end of July 2017.

You can also comment on other people’s ideas if you wish (politely of course!).

time to listenWe will be putting all the ideas together and will take all comments into account when drafting the statement.  The statement will be developed by a multi-disciplinary group but your voices can be heard.

Please contribute and also share this invitation as widely as you can – we would like to get the views of as many people as possible!

We will also be having a tweet chat on July 25th in the evening with @WeNurses using #WeMDT.  That should be a lively event so please put a place-holder in your diary!

Thank you!
Anne Cooper @anniecoops and Rosie Walker @successdiabetes

anniecoops diabetes

In pursuit of Resilience


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?

canHow 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.

47463096 - red hair one month old little kitten in the boxI 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.

005

This picture was taken around the time I was diagnosed as having T1 Diabetes

 

 

 

#FabDigital


53123679 - business people meeting corporate digital device connection concept

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’?

lightbulbSimple 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:

fab-change-dayIf 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?

Let us know what you do and what you think!

Deborah El-Sayed @debselsayed

Anne Cooper @anniecoops

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Margaret Mead

 

Wondering if we have got it all wrong


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:

47207829 - blog or diary journal cover with text my story in handwritingThank 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.

Woman aloneEverything 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.

47050307 - hospital corridor and doctor as a blurred defocused background

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
  • 40977303 - illustration of the breast cancer ribbonDeveloping 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.
  • 35336005 - health in the palm of your handHaving 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.
  • Realising the extent of influence and bias within medical research. See Ben Goldacre http://www.badscience.net/about-dr-ben-goldacre/ . And presentation by Peter Wilmshirst. https://m.youtube.com/watch?v=fLZ0sHOu8dE
  • Learning there is a commercial agenda that may not always be in the best interests of individuals.
  • Learning that some of the things I wanted to include in my wellbeing plan (that were being dismissed by my NHS team) are routinely included in other countries.
  • Learning that the Switzerland Mammogram Programme is being phased out. http://www.nejm.org/doi/full/10.1056/NEJMp1401875#t=article
  • Listening to the BBC radio 4 debate on breast screening http://www.bbc.co.uk/programmes/b049828q
  • 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.
  • Learning the positive impact of exercise but being disappointed at it never being mentioned during my NHS contact. http://www.ncsi.org.uk/wp-content/uploads/Living-with-and-beyond-2013.pdf (page 9 second point down).
  • 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.
  • Recognising that the relationship with a practitioner is fundamental to achieving a positive outcome. I would increase the 6Cs to 8Cs https://www.england.nhs.uk/wp-content/uploads/2012/12/6c-a5-leaflet.pdf . Continuity and connection are key to success.
  • HopeReinforcement 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.

41900135 - flower