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

But what IS nursing?


Training_Queen's_Nurses-_District_Nurse_Training_at_the_Queen's_Institute_of_District_Nursing,_Guildford,_Surrey,_England,_UK,_1944_D23118

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.

16571920_sI 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.

‘Don’t think of all the misery, but of the beauty that still remains’


Anne FrankFor me it feels like it has been a dark couple of weeks. Looking with optimism has led me to look more closely at family, nature and good friends. I think, however, Anne Frank was a wise young woman when she said “I don’t think of all the misery, but of the beauty that still remains’ (The Diary of a Young Girl).

Acting on these words, this blog is dedicated to all those who continue to inspire me and give me hope. What do I mean when I say ‘inspires’?  This is my personal list of reasons people might inspire me:

  • Passion – they are themselves inspired
  • Tenacity – in the face of adversity
  • Imagination – They engage my imagination
  • Optimistic – They make me feel optimistic
  • Togetherness – They make me want to join in
  • Purpose – They work on things that I think matter
  • Moral compass – they have a clear moral compass that they operate from

The list below is not an exhaustive list – there are many people who inspire me  – these were the first examples that came tumbling out:

nightscout

Night Scout – #wearenotwaiting @nightscout

I find the story of Night Scout inspiring because it took the tenacity and togetherness of a group of parents whose children have T1 Diabetes to do this. Can you imagine being told that your child has a serious, potentially life threatening condition? Wouldn’t you want to do as much as you could to help them to secure a healthy and fulfilling life? That’s exactly how I think the parents who set up the Night Scout Foundation must have felt and the system just couldn’t keep up with them.  Waiting for technical solutions that might help takes an age in health systems, decades sometimes. This group of parents decided that #wearenotwaiting and have gone on to develop some technical systems that help the monitoring of blood glucose for children despite of the system. I love their slogan ‘Be Impatient’. I love that they used their collective skills and did it anyway, despite being told, I suspect, they shouldn’t.

Read more about the Night Scout Foundation

The power of community and the drive of wanting to make things better is inspiring.

The Hen Power Project – @equal_arts

Sometimes things are so simple they have a beauty that comes from that very simplicity.  We know that social isolation and loneliness can lead to poor health

Dealing with loneliness is a complex social issue, as my personal experience tells me. This is why I think the Hen Power project is so inspiring. It is creative and optimistic and make me want to join in and indeed one day I might!

The Hen Power project is a project from Equal Arts, a charity in the North East of England. They work with some of the most disadvantaged people who are in their older years.

‘Our work focuses on giving people the opportunity to explore their imagination and live in the moment.’

I defy you to watch this video and not feel inspired!

We Nurses – @agencynurse

wenursesMany of you will know some of the story behind ‘We Nurses’ but I think I am lucky enough to know most of it. I believe Teresa Chinn is the key reason for their success – what is it that so inspires me about Teresa? It is her values. She is focused on community, sharing and collective value, sometimes at her own personal cost. I think she has a clear moral compass that is inherently the reason why We Communities continues to thrive.

Dr Sue Black – @dr_black

SAVINGBLETCHLEYPARKSue inspires me being a feisty and passionate woman. I remember meeting her in London and being inspired by her story about Tech Mums. But not only that then she helps to save Bletchley Park. I won’t try to replay her story here, Sue tells it so much better than me, you can read most of it from her blog.

Sue is a great example of someone with tenacity and determination to do what she thinks matters.

 

Playbox Leeds @emmabearman

tiles

A sample of the lovely tiles the Playbox team created with the community to improve the benches in the park

A shipping container and a whole lot of courage, inspiration and belief in her community is what it took, I suspect, for Emma Bearman to set up Playbox. In an area of Leeds that is less well known than its city centre cousins, Armley now has a great focus for people and play. Emma is like a force of nature and I admire her passion but also how well her projects encourage people to join in. Watching the development of Playbox has been great to see and is a great antidote to much of what the media would lead us to believe was our current society and communities.

 

You can read more about Playbox here and follow Emma on Twitter to be inspired.

Michael Seres @MJSeres

MichaelMichael is another force of nature. I have been following him for quite a number of years now and have been lucky enough to meet him. I won’t try to tell his story here as you can listen for yourself here as part of the Spark the Difference Exhibition (there are also many other stories here that will inspire)

Michael is one of the humblest men I have met but his particular inspiring skill for me is, that despite the odds, he has an air of optimism and hope which makes me feel that things will work out and that all is possible.

This list is not exhaustive by any means and I may write about more people in due course but what inspires each of us seems to be more poignant and potent in darker times than perhaps when the sun shines perfectly down. I hope they help you feel inspired too.

Who and what  inspires you?

cropped-daff-snow.jpg

 

 

 

 

 

Vocation – the pull of the bedside


ward sisterWe have had a busy few weeks. We have recently had much sadness in our family and this weekend an aunt, who has been left with no direct children at 84, was admitted to hospital. Her lovely best friend (oh to have such long lasting friendships), and the family, have been doing our best with rounds of visiting, making sure she had things to talk about, and more importantly perhaps, eat; a round of prawn sandwiches on special request, a lovely fruit salad, a fruit jelly studded with raspberries. Another friend gave her a lovely leg massage. We are all generally trying to make her feel better.

But this blog isn’t about her care it’s about my instinctual response to being at the bedside again.

I just feel I know what to do to care. I instinctively understand how to make someone feel comfortable or perhaps, more importantly, when they are not. I knew that she needed her own things, that food when you feel poorly comes in small packages and when tears are close, it’s time to take a hand.

There was another lady in the bed beside us. She clearly couldn’t see very well so was often calling out but once you got close she could focus. Her hearing was better on one side than the other and she likes tea. I couldn’t stop myself going to help her. We didn’t talk for long but in a few minutes I learnt that she too had lost her son at 60, she liked to garden and grew tomatoes and she regretted some things about her life. I pulled her tea nearer and opened a bar of chocolate for her that we had brought.  It was ironic that we were interrupted politely by a nurse who closed the curtains and did a memory test with her in a very loud voice.  I know she doesn’t know what year it is.

Nursing badgeToday I suggested our aunt had a shower – she looked at me and said ‘Can I?’ We went to the horrible institutional shower room and I handed her the nice shower gel and shampoo I had brought. I asked her if she wanted me to wait outside having sorted a seat for her in the cubicle. ‘No!’ she exclaimed ‘You have seen all this many times before’ and I guess she was right. I know she enjoyed her shower and we put on skin lotion and hand cream afterwards. It is the first time she has been in her own clothes for 4 days!

The thing about the last few days is I strongly felt my urge and instinct to care. This wasn’t just because it was family; it was more than that. I know I only had one person to help and that I had the luxury of time but the satisfaction I felt was immense.  I feel drawn to it, as if it fits somehow.

So, I suspect, this weekend I have been reminded of the meaning of ‘vocation’ the strong draw, almost a summons, to occupation. Sometimes I wonder if I’m kidding myself, if perhaps I have just been lucky to find something I like to do so much, but this weekend has reminded me that its more visceral than that.

As I was leaving the ward the two ladies in the beds opposite said to me ‘you were lovely with that lady – you should be a nurse’ and I smiled, and said ‘thank you’, after all what a huge compliment and wondered to myself what had dragged me away from the bedside all those years ago.

anne 1983

Sharing no more


Imagine this….

Woman aloneYou have had a really shit few years. The details don’t matter but suffice to say you feel you are moving on, you have met someone who you want to spend more time with and all of the things you have been through are being pushed back away somewhere quiet in your mind. You know you will need to talk about it at some point, after all its nothing to be ashamed of, but you are not ready. Your new partner doesn’t know about your loss and you are both enjoying the next phase of your life. You have decided to move in together and you have been clearing stuff out, sending old clothes and junk to the charity shop. Most of it you will never use again so you feel good pushing things into black bin liners and giving them away.

A few weeks later you are sat in bed on a Saturday morning having a lazy coffee when one of your friends messages you on Facebook. The next thing you know you notice you have a few messages which is unusual – you have an account on Facebook but you are not a big user as you are quite a private person really, but it just seems the thing to do right now. Your friend says have you seen the post of you on Facebook?

Loneliness empty benchYou open your Facebook timeline and staring back at you is a picture of yourself and David, before he died, when he was looking drawn and ill. The photo is a precious one but is not for sharing, yet here it was. You read the post and you realise that the precious memory stick that you kept all those memories on must have been left in one of the handbags you took to the charity shop and one of the assistants at the shop was trying to find the owner. You knew they were trying to be kind, to reunite you with your photos, but its unbearable.

You didn’t expect the next thing to happen either. Before you could blink an eye the post was being shared, posted and shared, posted and shared. The list of messages were people who recognised you and who wanted to bring the post to your attention.

You wanted it to stop. Your new partner had no idea about David and you weren’t ready to share the story.

The trouble is you just can’t stop it. The messages keep coming and no matter how often you ask someone to delete the post it carries on being shared. It is breaking your heart.

This isn’t a true story but the essence of it is true. I shared something on Facebook recently – I thought I was being kind and helpful and I had no idea what distress I would cause. The person who messaged me I don’t know them well but I could sense their hurt and distress. I removed my post but of course it was too late and I was just a link in a chain of many postings.

facebook likesThe lesson I learnt was that kind sharing acts can cause harm. I had no idea those photographs I shared would hurt but they did. We often talk about the negative aspects of sharing and I often see posts from teachers who are deliberately showing kids how far images can spread but I have shared things when I thought it was the ‘right’ thing to do. I won’t do this anymore. I have never really shared missing person pictures either and here is a great blog on why:

You never really know the back story and no matter how well intentioned you might be it can go wrong – so I will be sharing no more.

Anne

 

Digital Health – Big data, big business…big problems?


technology futureOn 26th April I was invited to join the debate facilitated by mHabitat and Leeds Beckett University as part of the Leeds digital festival.  I accepted with some trepidation – I have never participated in this way in a debate before.  The motion was:

‘the house believes that digital innovation in health is benefitting big business over patients’

I was to speak against the motion and was a seconder.

I really enjoyed the experience.  I realise I can be quite competitive and that comes out, even when its merely an academic exercise.  We did manage to sway the audience with the end result being 15:18.  I may have cheated slightly at the end by whipping my insulin pump out of my bra and waving it around as an example of digital innovation😉

The debate led me to think about the importance of ethics in business and in particular the health sector.  I do believe we need digital innovation but we need to be sure we act this out with a clear focus on an ethical approach to technology and the use of data.  I am not sure we yet have this sussed.

Here are my words:

‘To remind you the motion is that the house believes that digital innovation in health is benefitting big business over patients.  It’s my task to persuade you that this is not the case!

My proposition is that the relationship between big business and patients in relation to digital innovation is one of interdependency and not supremacy of business over patients, that is, that big business and patients have a mutual reliance in successful digital innovation.matching

I think most people would agree that innovation is only possible when innovators successfully fill a need or solve a problem.  I would suggest that those gaps and needs belong to patients and if big business fails to seek these out and productively meet these needs then their products will fail and join the lists of 1000s of unsuccessful apps piled on the mountain of useless apps.  We know that 90% of app install are generated by only 10% of apps – this means that understanding the needs of patients and meeting them is crucial to a successful business strategy; its a mutually dependent relationship.

In the past the biggest buyers of health technologies were health systems but today things have changed.  According to Ofcom (2015) 66% of adults carry a smart phone.  This shifts the technology infrastructure to the pockets of actual or potential patients – I have more computing power in my handbag than I would ever have dreamed possible in 1979, the year I was diagnosed as having T1 Diabetes.  But I also have buying power as the cost of technology has plummeted; the ability to chose and rate devices in increasingly transparent way is becoming the norm.  To imply people are not able to chose and can be hoodwinked by big business is paternalistic and wrong.  Meeting he needs of these increasingly tough customers is a priority for the technology providers. It’s tough out there with patients even going so far as to share recommendations!

The public need to work with technology companies.  We need them to be successful.  We need them to invest in creating successful innovative products that meet our needs.   High quality technology can take years of development and investment. If tech companies are to invest they need to invest in successful products – of course that’s those that meet the needs of patients (public and citizens).

But of course for those cynics out there you may think that it’s still just about the money….. well that maybe true but existing regulation and rigorous evaluation that needs to take place in health settings puts some brakes on industry – some might say it actually creates barriers to entry.  I might say that the rigor of assessment through mechanisms such as clinical trials means that big business has to care.

knowledgeSo my conclusion is that its a mutual relationship with power held in both camps, where the only way for big business to meet the needs of patients is to fill the gaps and this needs to be done in partnership with patients, or even by patients, who, god forbid, actually lead the technology innovation; innovation such as #nightscout and the #wearenotwaiting project.

Finally to quote Ghandi (because in a debate always end with a quote!!)

‘It is difficult, but not impossible to conduct strictly honest business’ (the emphasis is mine)

 

‘Why can’t we do it like Buurtzorg?’


buurtzorg
I was watching the Florence Nightingale Conference 2016 remotely last week and I was delighted to see Jos de Blok., the CEO of Buurtzorg on the platform describing the evolution of Buurtzorg neighbourhood nursing service – he never fails to impress and his charismatic leadership shines through his presentations. As a Florence Nightingale Scholar I was privileged to actually visit Buurtzorg and go out on visits with a nurse and I have blogged about that experience here.

What struck me again last week was the question I keep getting asked – ‘Why can’t we do it like Buurtzorg here in England?’

When we visited the Netherlands I remember someone asking Jos what, in his opinion, was the biggest challenge in the UK to implementing a similar model to Buurtzorg. His response? ‘You are a brownfield site.’

Brownfield is a term used in urban planning to describe land previously used for industrial purposes or some commercial uses. Such land may have been contaminated with hazardous waste or pollution or is feared to be so.

 

For those of you who are unsure what his meaning was the term brownfield site is used in planning terms to refer to a site that has already been developed, in contrast to a greenfield site where there is no existing development.

The same terms are also used in software development and deployment, where the presence of existing systems makes the transfer across to a new system more complex; there are legacy systems to consider and potentially old networks, boxes and wires to deal with moving from old to new.

When Jos set up Buurtzorg he didn’t have to worry about any of those things. He was able to start small and build and set up everything from new. He was able to learn and test the approach as he went along and could make decisions about how fast to develop without dealing with a concern about maintaining a nursing service to existing patients.

derelcit buildingSo the answer to the question ‘Why can’t we do it like Buurtzorg here in England?’ is a complex one. But here are some of the potential answers:

  • We have an existing service to maintain to patients, uninterrupted and maintaining safety – the shift from here to there is seen as too risky;
  • We have an organisational framework where there would be some people whose roles would no longer be required (similar to old boxes and wires). Middle managers don’t exist at Buurtzorg at all;
  • The Buurtzorg model requires executives to cede power to frontline staff and to stop many of the management processes that underpin the way we currently work;
  • It requires high trust and bravery from organisational leaders and commissioners – tearing up existing boxes and wires;
  • It requires nurses to stop seeing the hierarchy as the way to be promoted and to focus on increasing satisfaction through self-development of clinical interests;
  • The Buurtzorg model does not really have specialist roles and nursing seems to have increasingly become specialised in the last decades; Is nursing up for that?
  • Meeting regulatory requirements would be possible in the Buurtzorg model through the use of technology. But who would dare to have an organisation with such a small amount of checking and performance managing?

Just a few of my thoughts. If I had the power though, I would have a go. The experience of visiting with the nurse I spent time with was unforgettable and reinforced for me the reasons why I went in to nursing in the first place – as Jos would say ‘doing what is normal’ and what is ‘common sense’.

You can watch Jos talk about Humanity above Bureaucracy here.  Listen to why he says he started Buurtzorg!