How to make a good death by Justine McCuaig

My Mum died on June 6th 2017 at 11 45pm at home asleep beside my Father while he held her tight.

My overwhelming and lasting memory is of going up to offer Dad yet another cup of tea, (my family home by this time had become like a scene from Eastenders with endless tea becoming a cure all for our woes) and finding them both asleep in front of the telly, holding hands, as if it were any other night in their lives together. By this point, knowing mum was soon to leave us, I chose a whisky over tea while my sister drank Mum’s Tia Maria and we laughed at our naughtiness downstairs.

We had been caring for Mum for 4 months at home. She had been diagnosed with idiopathic pulmonary fibrosis a few years before and her lungs progressively stiffened up despite her objections and indignation at the condition. Everything else was in perfect working order!

Mum was very pragmatic about her diagnosis and we often talked about its progression together with and without my Father. I asked her when her condition worsened if she thought my Dad had “got it” and understood that she had terminal disease and was not going to recover. The next day I visited and she said “yes he’s got it….I sat him down and told him that I wanted buried in the garden and listed who I didn’t bloody want coming to the funeral  so you don’t need to worry about that anymore!”

Although as a family we liked our privacy from the outside world, we were not particularly shy or private people at home and regularly discussed all manner of things and shared experiences. No topics were ever out of bounds for us and I had the privilege of being raised by tolerant humanitarians with a good sense of humour and a love of dialogue, music and life. We have always been able to talk about the big things with ease, disease, mental illness, romantic woes, religion and politics but struggled with the smaller things and general displays of affection. We loved truly and where truly loved but it was unspoken generally and wrapped up with rather woolly “oh you knows”

Cuddling was not a regular thing either (for no good reason other than we didn’t really do it much) This physical distance completely disappeared when I began to nurse my Mum and provide her with regular personal care. I was more unsure about how I would feel about this than how she would feel about it even though as a nurse I was simply using the tools of my trade.  To my delight caring for Mum (and Dad) was one of the most wonderful experiences I have ever had.  The physical closeness and honesty was liberating for us both. We had so many laughs (normally about things we really shouldn’t laugh about!) Gift giving changed and although a commode wasn’t everyone’s idea of a great birthday present, my Mum loved it, especially with the balloon attached.

To be able to wash my Mum, do her hair, paint her nails all the time chatting about this and that with up to 5 grandchildren lying alongside her at “Granddads side “ was a unique shared experience which we all enjoyed up to the last week of her life. Grandchildren came and went as it suited them without obligation and new routines developed for us all which were played out wholly to our tune. Nail painting changed to pressure care and symptom control but there were no restrictions on visiting, no alien environment or hospital smells, no distance to travel, no reduction in privacy or dignity.

Just home – where the heart is, and where sitting on the bed is actively encouraged!

Of course we couldn’t do this without support. It was great that I was able to use my nurse’s tool box to be my family’s advocate, to explain things lost in translation and to explore mums options. However it was the cohesiveness of our systems, the excellent communication between teams and professionals actively hearing what the patient aspired to and facilitating those aspirations that really worked for my family and resulted in such a good death for my Mother

NHS Dumfries and Galloway has the most outstanding staff members across all disciplines. With thier input we can successfully choose our own package of care and be fully supported in that choice. Anticipatory care planning and social care integration have the potential to really transform the patient journey and is not something to be afraid of but rather to embrace.

 However all of these services need to be heavily invested in to meet the expected demand from   an aging population. Without continued investment and service development, NHS Dumfries and Galloway will not be able to fulfil this ambition and enjoy the success that my family had.

Mum was admitted to DGRI 3 months before she died as an emergency admission and was discharged from ward 7 with a complete package of palliative care and specialist community respiratory support within 32 hours.  All of her drugs and letters were ready at our agreed   discharge time, the domiciliary oxygen was arranged and delivered and referrals completed for the McMillan, Marie Curie Nursing services and Community Respiratory Specialist Care.  Her DNR was signed and she waved it under the nose of anyone who was even vaguely interested in reading it. It remained pride of place on the bedside dresser as it was very important to her that her intentions were known. Everything my Mum did was delivered with humour and even this got a comedy slant!

The Kirkcudbright District Nurses introduced themselves and ensured that their door was kept fully open for when we needed their help and support. They responded promptly to any requests and where always available at the end of the phone to discuss Mums needs as they arose. Our Specialist Respiratory Nurse visited regularly.  When Mum developed a chest infection he promptly liaised with the consultant from our dining room relaying Mums reluctance to be admitted but advocating   the need for her to receive appropriate treatment which could prevent her condition worsening. Although her condition was terminal   there were still things that could be done to minimise her symptoms and prolong the length of her wellbeing. Mum agreed that if things got rapidly worse she would potentially consider IV therapy in hospital but would initially hedge her bets with tablets, lots of tea and nebulisers. She started her antibiotics orally that afternoon and recovered and remained well   long enough to see her beloved swallows   return   from Africa to nest in the garage, enjoy the spring flowers from the garden and support the children through their exams.

The Occupational Therapist ensured Mum had all of the equipment she needed when she needed it. If a piece of kit was ordered it was generally   installed within 24 hours. The Equipment Delivery Staff ensured that we knew exactly how to use it after they had installed it and answered all questions fully and in a voice loud enough for my deaf Dad to hear! They ensured he knew who to contact in the event of any problems. Mum had everything she needed, a bath chair, a stair lift, a stand aid, a pressure bed.  Visiting relatives from the Deep South stood with mouths wide open in disbelief at the care and support my family were receiving and began to seriously consider relocation. After Mums death the equipment was collected promptly but respectfully and was almost symbolic of starting life without her.

We did need the District Nurse’s help more regularly in the days running up to her death and because they had developed a slow growing respectful relationship with my family they were welcomed in like old friends.  They encouraged me to be Justine the daughter rather than Justine the nurse which was invaluable advice. They looked after us all, and talked us through every stage or change in Mum’s condition. Most importantly Mum thought they were great and that is, of course because, they were.  She was so interested in people and life and living that she became just as invested in how they were doing as they were in her. This was especially true of the student who approached and completed her finals during mums care. She told Mum when she   successfully passed as she knew it was important to her to know despite Mums condition rendering her uncommunicative at that point.

However we all knew she was dead chuffed!

Mum received reflexology   and head and hand massage in her bedroom as part of her palliative care package which was a new experience for her and one she really appreciated. What she enjoyed as much as   the treatment was her was that she had another person to communicate with and to learn from. She loved engaging with people more than anything. It gave us all something to talk about too. Even then life remained interesting with new experiences to share.

When Mums condition deteriorated to the point of suffering the District Nurses and GP promptly began her syringe driver to minimise her symptoms. I had discussed this often and in detail when Mum asked about “what next” and she fully understood that when her symptoms were controlled this way, she would be less awake and aware. She made a very informed choice when the GP prescribed it and her consent made me feel content with that course of action. She had had enough. Any other GP may have been phased when she asked if he was “putting her down,” especially when after administering an injection she said “No, no I’ve changed my mind” with a wicked twinkle in her eye!” However Mums GP knew her well and knew that with her humour she was trying to make a difficult job easier for him.

The Marie Curie nurses would phone regularly to see if we needed help over night which was very comforting. In the end the nurses attended the family home twice. Once to administer breakthrough medication in the wee small hours on the day the syringe driver was started (all the way from Dumfries – a round trip of 60 miles) and the following night at 10pm for their inaugural sleep over. Mum died shortly before midnight that night and Dad then made the long walk to the spare bedroom to ask our guest to confirm that she had gone.  Having her there at that time was invaluable and over the next few hours we all chatted and laughed and cried while we waited for a registered nurse to certify Mums death.  The care and support we all received that night was beyond excellent . Mum stayed the night, there was no rush for her to go anywhere and we all spent time with her before she left us mid morning. Downstairs my sister and I repeatedly heard my Dad’s footsteps as he came and went into their bedroom to check that she was really gone.

And she had gone,  Mrs T had left the building. Although we were (and are) devastated we have all reflected our relief that she had suffered so little in the end and that she died where she wanted surrounded by the people she loved . Knowing this has filled our sad hearts with a warm feeling knowing we did right by her and in time this will be a great comfort to us.

Janice M 1

Justine’s Mum and Dad on Crosby Beach 

Justine McCuaig is a Health protection Nurse Specialist at NHS Dumfries and Galloway

Can I make a difference? by Paul Gray

It’s a big question – can I make a difference?  How does it feel to ask yourself that?  For some of us, the answer will be different on different days.  My experience suggests that your answer depends much less on what you do, than it does on how you feel.  In this blog, I’d like to offer some thoughts on making a difference.

However, some context first.  I fully recognise the challenges we face.  Health budgets are going up – but pressures on recruitment, and the demands of an aging population, are also very real.  There is also still much to do in tackling inequalities, and improving the health of the population, which NHS Scotland can’t do on its own.  And we do know that people have the best outcomes when they are treated and cared for at home, or in a homely setting.  So our current models of care are transforming to meet these demands, and to provide the most appropriate care and treatment for people, when they need it, and change brings its own challenges.

So my first suggestion is to turn the question, “Can I make a difference?” into a statement – I can make a difference.  If you start from that standpoint, you’re much more likely to succeed.  It’s easy to become pre-occupied with the things we can’t change, and the barriers and problems – I know that I fall into that trap from time to time.  But wherever I go, I see people throughout the NHS, and in our partner organisations, making a difference every day.  So ask yourself, what is the one thing I can do today that would make a difference?  And then do it!

paul-1Now, give yourself some credit – think of an example where you did something that was appreciated.  Write it down and remember it.  If you’re having a team meeting, take time to share examples of things that the team did, that were appreciated by others.  Sharing these examples will give you a bank of ideas about simple things that matter to other people.  And it also gives you something to fall back on, if times are tough.

Next – think of an example when someone did something for you, which you appreciated.  Find a way to share these examples too – if it worked for you, it might work for someone else as well.  Ask yourself when you last thanked someone for something they did well, or something you appreciated.  It’s easier to go on making a difference if others notice what you’re doing!

If you’re leading or managing a team, ask yourself how much time the team spends discussing what went well.  It’s essential to be open and transparent about problems and adverse events, but if that’s the whole focus of team discussions, we overlook a huge pool of learning, resources and ideas from all the positive actions and outcomes.  And we risk an atmosphere where making a difference is only about fixing problems, rather than about improvement.  So, as yourself and your team, what proportion of time should be spent on what went well?

Remember to ask “What Matters to You?”.  I know that the focus of this question is on patients, and that’s right because they are our priority, but it’s a good question to ask our colleagues and our teams as well.  Just asking the question makes a difference – it gives you access to someone else’s thoughts and perspectives, and is likely to lead to better outcomes.

paul-2Will any of this change the world?  Not on its own, of course.  But you could change one person’s world, by a simple act of kindness, or listening, or a word of thanks.  You can make difference!

Paul Gray is the Chief Executive Officer for NHS Scotland and the Director General for Health and Social Care at the Scottish Government

There is no truth, only Perception by Emma Murphy

I recently started as the new Patient Feedback Manager for NHS Dumfries and Galloway. Just as I was settling in to my new role, life popped a little bump in the road and I found myself rushing through the doors of A&E one Friday morning with my poorly toddler. After a number of tests and assessments we found ourselves on Ward 15 for the weekend. I’m usually a reasonably laid back parent and when the kids get unwell, I generally believe in ‘keeping it til it gets better’, but watching my baby girl lie listless in my arms stirred up something almost primal in me. I needed to protect her and I needed to do whatever I could to get her better. Of course, this was paired with the realisation that I alone couldn’t fix this and that we were almost entirely reliant on the doctors and nurses. So there I was, anxious, frustrated, frightened and feeling more than a little helpless. Feelings I am sure many of you have experienced in similar situations.
Later that weekend, as things began to calm, I took some time to reflect. Whilst the treatment we were receiving was of course important, the key thing that was making our experience so positive was the kindness; the gentle tones, the sweet smiles directed at my daughter, the hand placed on my shoulder when I was particularly worried and most of all, the fact that those looking after us genuinely cared. I thought about how I had felt when I first arrived at A&E and how determined I was to ensure that my daughter received urgent help. I imagined how I would have felt if the care had been different. What if the kindness hadn’t been there? What if I was dismissed as an over anxious mother? What if somehow they missed something or didn’t give us the right treatment?
I can see how any one of those scenarios could occur and after many years working in the public sector I can also understand how sometimes, there are justifiable reasons for such. As patients and family members we often don’t know what the doctors and nurses are facing. It’s difficult to fully comprehend the overwhelming task they face each and every day with limited resources, conflicting demands and huge, often unpredictable, pressures. We must remember too that they are juggling all of this alongside their own lives, challenges and all. Whilst sitting here on the other side of this experience it is easy for me to apply that logic and understanding, it would however have been very different had any of those things happened when I was actually in that moment, dealing with those big emotions.
image2-2It can be thoroughly unpleasant when someone complains about you. Even more so if you feel that it is unfair or unjustified. We must appreciate however that it is often about perception. The view from every angle is slightly different. We must too remember that nothing occurs in isolation. Just as a complainant may not know what you are facing that day, you may not know their story. Someone once told me that people shout because they feel they are not being listened to. The anger we sometimes see from complainants often stems from fear or frustration. The same emotions that can make us defensive or even dismissive, when we are on the receiving end of that anger. If we approach complaints from a position of empathy and with a genuine desire to learn and improve, we will go a long way towards reaching more positive resolutions.
Until recently, different parts of the public sector had different approaches to dealing with complaints. This meant that patients, service users and customers were facing challenges negotiating the different procedures which, on top of an existing complaint, often escalated their frustration. Staff were also unclear about how to deal with complaints which led to a further variety of approaches. This issue was identified by the Scottish Government a number of years ago and as a result they have been working towards a standardised approach to complaints handling across the public sector in Scotland. The Scottish Public Services Ombudsman (SPSO) has led on this work, already delivering a model Complaints Handling Procedure to local authorities which they implemented in 2013. They are now working with the NHS to help us to implement a very similar procedure from 1 April 2017 and it is a key part of my role to support NHS Dumfries and Galloway with that task.
image3.pngI know my NHS colleagues care deeply about their patients and the experience they have during their time with us. It is however a little more challenging to try to ignite that same passion about legislation, process and statutory timescales. We all know they are crucially important, but colleagues generally just want to get on with the job they are here to do, which is caring for people. It’s my job to help them understand that these changes will make everyone’s lives a little easier. It will ensure we have a clear procedure and a consistent approach to dealing with complaints. It will also ensure that we are offering the best support we can to those that wish to provide us with their feedback. This will help them to tell us their story and will better assist us in our quest to deliver the best possible care to those in need. Something we are all committed to.

You can learn more about the national changes to complaints handling here – http://www.valuingcomplaints.org.uk
To tell us your story about the care you have received, please contact Patient Services by phone on 01387 272 733 by email at dumf-uhb.PatientServices@nhs.net or by visiting the national Patient Opinion website at http://www.patientopinion.org.uk/

Emma Murphy is the Patient Feedback Manager at NHS Dumfries and Galloway.

Gender Matters by Lynsey Fitzpatrick

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image5On 6th September 2016 in Lockerbie Town Hall, NHS Dumfries and Galloway and Dumfries and Galloway Council, supported by the national feminist organisation ‘Engender’, jointly hosted ‘Gender Matters’ – an opportunity, in the form of a workshop, to explore the issues surrounding gender equality.

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There were over 40 people from a range of organisations including NHS, Council, South West Rape Crisis and Sexual Abuse Centre, LGBT Plus, LGBT Youth Scotland, DG Mental Health Association, Support in Mind and Glasgow University, and also members of the public along with staff from other Health Board areas.
When I started to write this blog post, I was thinking back as to why the steering group behind the event decided to host this event in the first place. There is a plethora of evidence to back up why we need to support events of this nature, for example:

  • Women are twice as dependant on social security than men
  • In 2015 the gender pay gap in Scotland was 14.8% (comparing men’s full time average hourly earnings with women’s full time average hourly earnings)
  • Also gender pay gap in Scotland when comparing men’s full time average hourly earnings with women’s part time hourly earnings was 33.5%
  • This means, on average, women in Scotland earn £175.30 per week less than men.
  • The objectification and sexualisation of women’s bodies across media platforms is so commonplace and widely accepted that it generally fails to resonate as an equality issue and contributes to the perception that women are somehow inferior to men.
  • Femininity is often sexualised and passive whereas masculinity is defined by dominance and sometimes aggression and violence.
  • At least 85,000 women are raped each year in the UK.
  • 1 billion women in the world will experience physical or sexual violence in their lifetime.
  • In 2014/15, there were 59,882 incidents of domestic abuse recorded by the Police in Scotland. 79% of these incidents involved a female ‘victim’ and male perpetrator.

 

So there are plenty of reasons as to why we held this event; to challenge social gender norms, to progress thinking around changing perceptions in our homes, at work and how we confront the media (not least our legal duty under the Equality Act 2010).

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But what is it that made us so passionate about being part of this work?
image12A huge reason for me personally is that I have an (almost) 5 year old daughter. In my current post as Equality Lead for NHS D&G I have become much more aware of some of the research and facts around gender equality and often reflect on how her future is being shaped as we speak; because of the gender norms all around her, expectations from her family, her peers and her school.
I’m horrified to think that she is more likely in later life to be paid less than a male counterpart for doing the same level of work, or that her relationships and self esteem will be impacted by the stereotyping of her gender in the media.

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image29A friend and I had a discussion at one of the film screenings for “16 days of action against Gender Based Violence” which focused on the sexualisation of children from an early age. We talked in particular detail following the film about the impact the internet might have on our daughters as they grow up – the availability of porn, more opportunity to be groomed, shifting expectations of how our bodies should look and what we should be doing with them – and decided that we really wanted to do something about this, to make a difference to our daughter’s lives, and hopefully many more at the same time.
As NHS employee’s we are legally obliged to consider gender issues in everything we do. The often dreaded impact assessment process is designed to help with this. Yet at times it is seems more of a burden than a way of informing services how best to prevent discrimination and advance equality for all.

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I came across the following clip at a Close the Gap event which shows how gender mainstreaming is applicable in situations that many of us deal with on a daily basis and how this can impact on efficiency and quality of public services, benefitting not only the people who use our services, but also our key partners:

(Watch from the beginning to 3:18minutes in for a quick demonstration on how indirect gender approaches can change the way people live).
Back to the event in September: the day was split into two halves – the morning session focused on Culture and the afternoon session on Economy. The format for the day was Open Space Workshops, starting with a short presentation on each of the topics. Participants then identified topics that their group wanted to focus their discussions around. Participants were free to move around the room and join in or leave discussions as desired.
Some of the topics covered during the course of the day included:

  • Gender in the Media
    Equal pay for equal work
    Rape Culture
    Part time Work
    ‘Hidden Care’ and the economic ‘value’ of care
    Societal Norms
    Women and Sport
    Success
    Cultural Expectations
    Being non-gender specific (e.g. clothes, toys, activities)
    Women’s Only Groups
    Gender Education
    Welfare Reform

Understanding ‘double standards’
There was a real buzz in the room as each of the groups discussed their topics of interest and it was clear that participants appreciated the opportunity to discuss the issues openly, an opportunity we don’t often get.
All of the event feedback was extremely positive, and there was a real interest from participants in taking this work forward, both in the workplace setting, and in their personal lives. Some of the suggestions included the creation of a Gender Equality Network for D&G, avoiding stereotyping, creating safe spaces for women to talk openly, promoting the White Ribbon Campaign, encouraging managers to see the benefits of a work/life balance, challenging the way gender is represented and considered across society, e.g. across social media, within policies and structures. This list is by no means exhaustive of everything that was covered on the day!
I hope that having a quick read of this sh

ort blog (and hopefully a watch of the gender mainstreaming clip) will be enough to convince a few more people that gender equality really does matter.
If you are interested in being part of future discussions on gender inequality and involved in a Women’s Network then please get in touch.

Lynsey Fitzpatrick is Equality and Diversity Lead at NHS Dumfries and Galloway

“Going that extra mile” by Sharon Shaw

Patient Centred Care

Being caring and compassionate is an unique talent and sometimes sadly often gets forgotten about and falls by the wayside. We are all human beings and sometimes we all need to take a step back and grasp how valuable our lives are and that of loved ones.

I want to share my story. This is the first time I have written a blog, so please be “patient” with me.

sharon-1

In November 2015 I started my new job in clinical education. I was excited and yet in a way I wanted to prove to myself and others how valuable education is in this forever changing healthcare environment.

Approximately 3 weeks into my new role, the Respiratory Team contacted me concerning a patient with a complex condition. It was a 59 year old male who had severe emphysema and required an Under Water Sealed Drain (UWSD) to try and reinflate his left lung. The damage was so severe it became evident that the UWSD could not be removed or his lung would continually, spontaneously collapse.

“IT WAS HIS LIFE LINE”.

I walked into the side room in Ward 12 to introduce myself. With hos blue eyes he gazed up at me looking slightly anxious. Giving him a good firm handshake, I smiled and said

“Hello John, my name is Sharon”

I’m a great believer in “non-verbals” as it delivers communication and initially builds upon a trusting relationship. And indeed it did as from then on it had a huge impact.

As my father always said…

“Sharon a good solid handshake goes a long way”.

John was palliative. He had not long retired and to get devastating news about his diagnosis and outcome was so sad. His ultimate wish was to get back home to spend the rest of his short life left with his beloved family.

sharon-2I made a point of seeing John everyday in Dumfries and Galloway Royal Infirmary. It was essential to build up that relationship. During the 2 weeks I delivered education on how to care for a patient with an UWSD. Approximately 30 nurses received education, Kirkcudbright Hospital Staff, District Nurses and Rapid Response Team. As you can imagine there was a lot of anxiety, fear and uncertainty amongst the nurses. This was actually the first patient to get discharged to Kirkcudbright Hospital with a UWSD. John was fully aware of my role and was updated.

The time had come, John was ready for discharge. Understandably so, he was very anxious. I took the decision to actually go in the back of the ambulance with him to Kirkcudbright Hospital. Holding his hand and bantering away we both arrived to our destination. We were pleasantly greeted by the nursing staff. They knew John as he was a local from the town and had received care from them in the past.

His family were so supportive especially his daughter Michelle, whom I have now made a lifelong friend.

John managed to continue life for 7 months in Kirkcudbright Hospital. Unfortunately he did not get his wish to go home but in all fairness the care he received from the hospital staff made his last few months comfortable and to have that precious time with his family. He managed to celebrate his 60th birthday with his family. It was an emotional, uplifting day.

I guess what I’m trying to say folks….

“Going that extra mile” was so successful and beneficial. I would certainly do it all again.

Thanks for taking time to read this.

Sharon Shaw is Clinical Educator for NHS Dumfries and Galloway

 

 

 

Why wont MY ‘thing’ go viral? by Ros Gray

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Dreams are made when your great idea gets out there in this social world and goes viral. The very thought that thousands of people (likeminded as you) are looking at your good idea and thinking – “That’s a great idea, I could do that”
especially in our health and social care world when it isn’t necessarily the idea that’s new (although sometimes it is) but the ability to engage others to get them to follow your lead, for the benefit of patients and families.

So when things take off in this way, is it just good luck, or is there something we can learn? How does a good idea move from being MY great idea to something that a lot of other people want to do too?

In his New Yorker article ‘Slow ideas’ Gawande started my thinking on this topic (and a million other things!) when he discussed the evolution of surgical anaesthesia compared with the uptake of antiseptics to prevent sepsis. He described how the former spread almost worldwide in 7 years, the latter taking more than 30 years (and you might argue that the inability to clean our hands consistently even today means that we still haven’t cracked it).
It’s easy to imagine the difficulty undertaking any surgical procedure on a patient not anaesthetised (not least for the patient) – having your colleagues hold down the poor patient until such time as they (hopefully) passed out with the agony of the ordeal. Then you hear of an innovation where the patient inhales a gas and goes gently to sleep, allowing the procedure to be done with ease – a no brainer in terms of its likelihood to be adopted by others… and swiftly! The action of holding down the screaming patient and wrestling to undertake the procedure was clearly very personal and real for all those present.
However, the use of antiseptics to prevent an infection that the practitioner might never even see personally, leaves a lot to the imagination and limited personal cost, with the exception more latterly of professional reputation and in some quarters accreditation.
This situation was also exacerbated by the unpleasantness of the environment, where the practice of good antisepsis in the early days meant that theatres were gassed with antiseptics, hands scrubbed raw with early chemicals – all to prevent something that the practitioner might never witness… Perhaps, then, it’s easy to see why that adoption took longer than 30 years. Or is there more to it than that?

Gawande’s article goes much further and is very thought provoking but he fundamentally sets out how, if we want our ‘thing’ to be taken up by others at scale, then “…technology and incentive programs are not enough. “Diffusion is essentially a social process through which people talking to people spread an innovation,” wrote Everett Rogers, the great scholar of how new ideas are communicated and spread.”
He goes on to say that while our new social world can get the ideas out there
as Rogers showed, “…people follow the lead of other people they know and trust when they decide whether to take it up. Every change requires effort, and the decision to make that effort is a social process.”

I think these might be key concepts for us to consider with our personal improvement efforts. How hard do we make it to do the right thing?

Looking around at some other recent great ideas gone viral that I have become aware of – I thought it might be helpful for us to take a closer look at these and consider their spread from this perspective – I thank Delivering the Future Cohort 11 for their help with my developing thinking #DTFcohort11.

And also to consider how would the business world more broadly consider this issue?
Great marketers certainly start with two concepts that absolutely relate to our world and reflect Gawande’s thinking:
Know your audience
and
Make an emotional connection.

So looking at 3 examples of great ideas that have gone viral a little closer to home, can we identify the critical success factors that made them work so that we can apply that learning to our own work?

Case 1 – What matters to me

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Who Jennifer Rodgers @jenfrodgers Lead Nurse for Paediatrics NHS GG&C
What What Matters To Me (WMTM)

WMTM is a 3 step approach

1 Asking what matters

2 Listening to what matters

3 Doing what matters

Why “Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners — learning, in other words, how to ask, ‘What matters to you?’ as well as ‘What is the matter?’”
Where Yorkhill Children’s Hospital Glasgow – global
When Last 4 years
How Originally Jens’ Quality and Safety Fellowship project, building on the concept of Lauren’s list in the USA; national and international presentations, Used the Model for Improvement as the improvement method. Started by asking one child to draw what mattered to them, and staff making every effort to include and react positively to this information –  now used routinely as part of the paediatric admission process. Spread includes other specialties such as the Care of Older People and those with Dementia.

Case 2 Hello my name is…

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Who The sadly very recently deceased Kate Granger (http://hellomynameis.org.uk @grangerkate) a young doctor battling at the time with terminal cancer, made observations about the human interactions she was struggling with at a very vulnerable time.
What Kate decided to start a campaign, primarily using social media initially, to encourage and remind healthcare staff about the importance of introductions in healthcare.
Why She made the stark observation that many staff looking after her did not introduce themselves before delivering her care. She felt it incredibly wrong that such a basic step in communication was missing. After ranting at her husband during one evening visiting time he encouraged her to “stop whinging and do something!”
Where NHS England – Global
When Last 3 years
How Twitter campaign initially – #hellomynameis has made over 1 billion impressions since its inception with an average of 6 tweets an hour.

Kate has left an incredible legacy with #hellomynameis that will continue to impact positively for patients.

Case 3 The Daily Mile

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Who Elaine Wylie – Headteacher (recently retired) St Ninian’s Primary School, Stirling

thedailymile.co.uk

What The aim of the Daily Mile is to improve the physical, emotional and social health and wellbeing of our children –regardless of age or personal circumstances.
Why It is a profoundly simple but effective concept, which any primary school or nursery can implement. Its impact can be transformational- improving not only the childrens’ fitness, but also their concentration levels, mood, behaviour and general wellbeing.
Where St Ninian’s Primary School, Stirling – global
When Last 3 years
How The Daily Mile takes place over just 15 minutes, with children averaging a mile each day.

Children run outside in the fresh air – and the weather is a benefit, not a barrier. 

There’s no set up, tidy up, or equipment required.

Children run in their uniforms so no kit or changing time is needed.

It’s social, non-competitive and fun.

It’s fully inclusive; every child succeeds, whatever their circumstances, age or ability.

Elaine demonstrated huge impact on eliminating obesity in her primary one class that had stated the Daily Mile in Nursery.

In each of the cases the idea started with one individual who had a simple, sensible, not necessarily unique idea, but certainly something that was a bit different from the status quo – perhaps even challenging and making the status quo uncomfortable.
Each leader had a degree of power and autonomy in their local context, for Kate this was as an informed patient, so some might argue her ability to influence would have been limited.
Each idea was simple and easy to try in different arenas.
Each was free or relatively low cost to implement, even at scale.
The impact on patients or children was obvious or in the course of early testing clearly demonstrated.
Each leader used social platforms as a spread mechanism.
In every case, the idea clearly feels like it was the right thing to do, or scandalous that it wasn’t happening routinely, something each of us would want to happen if we were the subjects in question. Perhaps even the standard we apply every day in our professional or personal lives and assume that everyone else does too.
So clear evidence to support Rodgers view that “Diffusion is essentially a social process through which people talking to people spread an innovation,” – Perhaps the easy access to social platforms in these cases made ‘people talking to people’ helped in these cases?
Each leader knew their audience and played to that strength – but also and perhaps most importantly in each case, the emotional connection is huge, but each from a very different perspective.
Is the emotional connection the critical success factor in these cases – and something we should consider carefully if we want our work to spread?
Which emotions might you tap in to when trying to engage folk in your great idea? Emotions described in pairs of polar opposites might give you some food for thought and a place to start with your great idea:
Joy or sadness
Anticipation or surprise
Fear or anger
Disgust or trust

You will have many more thoughts than time permits here, but I leave you with a thought of mine… perhaps we all have an opportunity to use a more considered approach to the scale up and spread of good intentions by learning from those that have done that well.
If not you, who? If not now, when?

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Simple checklist
How simple have I described my great idea – Have I got my 1-minute ‘elevator pitch’ worked out to easily influence others?
Does it feel the right thing to do?
Is it relatively cheap or free? If not who will fund the idea, now and then at scale?
Am I convinced that it isn’t happening to every patient/family every time, reliably? Do I have the data that proves that?
Do I have the power to influence, or if not, who do I have to get on board?
Do I have the data and story to describe how it works and how easy it is to adopt, including the impact?
What social platform for spread will I use?
Which emotions are triggered, or will I aim to tap in to, in order to engage people to want to do things differently?

Ros Gray recently retired from her post as National Lead for the Early Years Collaborative. Prior to that post she was Head of Patient Safety for Healthcare Improvement Scotland.

 

The art of dying well by Margaret McCartney

Do we want to live as long as modern medicine allows us, or only so long as life is sweet?

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Death is our only shared destiny, but we are in a new era; it’s not unusual to have 70-year-olds looking after a 90-year-old parent. A few years ago we had to reorganise the shelving in the general practice where I work in order to accommodate the notes of our octogenarians and nonagenarians. In 1917, King George V sent out 24 messages to people having a 100th birthday. In 2011, the Queen sent 9,736.

This is worth celebrating. Just before Christmas, I was languishing in a long queue at the Post Office where a 93- and a 94-year-old were holding court, debating the standards of humour in the greetings cards display to such uproar that the postmistress had to pause to wipe tears of laughter away. Age does not mean a loss of fun, vivacity, or pleasure in living.

But age is still the most potent risk factor for death, and many older people at the end of life have its quality impaired by loneliness and, frankly, too much medicine. If we want good living right up until we die, we should be examining what makes it good — and what stops it being so.

At the heart of the problem is the difficulty in predicting death. There is good evidence that doctors overestimate how long people who are known to be terminally ill will survive: we have libraries stuffed with research papers, but no crystal ball. This matters because medicine is often conflicted over the question of preserving life at the cost of its quality. Treatments in hospital might reduce the size of a cancer, but prevent the patient from going home, where she’d prefer to be. Medication for the heart might cause fatigue or dizziness but give extra weeks or months of life. But if this means less walking and independence, is it worth it?

Death is inevitable, but frequently seen as an inadequacy in medicine or treatment. Harpal Kumar, the chief executive of Cancer Research UK, said on the radio recently that his aim was to ensure that no one died of cancer any more. But we are still going to die, so what are we to die of? Is every death to be fought back with all of medicine’s might, and to be always considered its failure?

Surprisingly, in older people, frailty is a bigger risk factor for death than cancer, organ failure or dementia. Frailty is a relatively new concept in medicine, though William Shakespeare described it well in As You Like It:

the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side,
His youthful hose well sav’d a world too wide
For his shrunk shank; and his big manly voice,
Turning again towards childish treble, pipes
And whistles in his sound

Frailty is often rapidly recognisable: low levels of activity, a loss in muscle mass, weakness, falls and easy tiredness. The months and weeks before death in an older person are frequently characterised by a series of crises, caused by something as seemingly small as a urine infection or a trip. But the background of frailty means less recovery each time, and a slow, or stepwise decline. If ageing is the cause of frailty, how can we treat it? Medicine has moved into a new era of riskfactorology. We are no longer concerned about people who have a disease, but people who have a risk factor for a disease. We search for blood pressure or cholesterol levels which are deemed high enough to then lower, to try to prevent heart attacks or strokes. We look for bone-thinning, in order to prescribe medicines to attempt to strengthen the bones and prevent a fracture; we offer flu vaccination to everyone over the age of 65.

All this results in more medicines being prescribed and taken. This might sound so reasonable that the mechanism GPs work to (monetary carrots for adhering to targets and shameful sticks whipped out by the Care Quality Commission when we fail to reach them) seems OK. But our riskfactorology results are for the risks and benefits for populations, not individuals, and the result is thousands of people being prescribed medication that they will never benefit from.

Take the medications designed to prevent osteoporosis, tablets called bisphosphonates, such as alendronic acid. These are taken by over a million people in the UK, usually once a week. Ideally, they prevent hip fractures or collapses of the spine. Hip fractures in frail older people can precipitate death, and are to be taken seriously. However, these medications usually don’t work. For example, the independent Cochrane Collaboration has found that for women with low bone density, or who have already had a fracture in the spine, long-term use of alendronic acid can cut the risk of hip fracture from two to one in 100. This is only a small reduction, although it can be described as a ‘halving’ of risk.

What about side effects? Some women will get none, others will feel sick and nauseated. Some women dread the day they take the tablet and feel they have to write it off. Some will consider that a price worth paying, others will not.

However, people aged over 65 are on an average of two drugs, and 10 per cent are taking five or more. In medical terms, this is an alarm signal — is this combination of medicines really doing more good than harm? Older people are chronically under-represented in clinical trials. So there might be trial data to show that a drug works pretty well in a 40-year-old — but will it have just the same effect in an 85-year-old? Our kidneys and liver — which metabolise our medication — tend to work less well as we age, meaning that standard doses can become toxic. And the drugs can interact with each other. Our nervous system is partly composed of unconscious nerves, controlling our heart rate, digestive systems and blood pressure. Many drugs have an effect on these nerves — from antidepressants such as trazadone, to medicine for diarrhoea like loperamide, to oxybutynin, for the bladder, and many antihistamines. The effect can be cumulative, risking falls and memory problems.

It’s this constant play of harm versus advantage, pro versus con, that characterises much medicine, taking in Shakespeare’s sixth and, then, seventh stages of life. Frailty is a risk factor for death, but most frail patients will not die that year. As a doctor trying to decide which prescriptions are worthwhile and which are not, I’m also keen that I try to understand what matters to patients. Is this side-effect worth it? Is this medication keeping you well or causing you problems?

Medicine can do great things — joint replacements can add life to years, heart attacks are treated with swift declogging of arteries, HIV can be managed long-term. But life through a medical prism is prone to give a medical answer to social problems. Loneliness is one of the biggest. Up to 16 per cent of our elders describe themselves as lonely. I’ve come across patients where the only conversation they’ve had all week has been with the doctor. People who are lonely are more likely to use NHS services, and loneliness is a risk factor for depression and earlier death, as big a risk factor as obesity or high blood pressure. Research points towards social interaction being protective against memory loss. Good health at the end of life is not just about medicine; it is about social activity and networks.

So where do doctors fit in? Just before Christmas there was a sudden (and, sadly for me, temporary) lull in the demand for appointments. Instead of the usual ten, I could spend 20 minutes with just one patient. I had a joyous couple of days, because I could look away from the computer, relax and listen without the constant narking pressure of running late. Suddenly, there was time to talk about what really mattered. With this illness, what are you thinking about the future? Is there anything that is worrying you? What are you enjoying just now? What do you hope for? Unleashed from the tickbox demands of the contract we GPs work to, general practice is fascinating, uplifting and profound in its humanity. Listen, and people talk.

It’s clear from the research that the vast majority of people with life-limiting conditions want their healthcare professionals to play it straight — most people want honesty. This does not mean that people should be told brutal truths in one unexpected sitting. It does, though, mean that talking about death and what quality of life means — for you — should be an unfolding, commonplace conversation.

This is hard, not just because it can feel awkward or upsetting. But the problem is plain. Medicine has a habit of almost unstoppable escalation. One treatment leads to a side effect, which can lead to another treatment, which can lead to another side effect: we can end up chasing tiny odds of benefit while the problem, staring us in the face, is that death is going to happen at some point no matter what we do. Too much medicine is capable of changing a peaceful death into a medical battleground, a peaceful death surrounded by family at home into a death in the bright lights of intensive care. Stepping off the medical escalator may take courage, not just for patients and families but also for doctors. Until we value a good death as much as we value a good life, we will fail to serve people well at the end.

This article was published in The Spectator on October 24th 2015. The original version can be found at http://www.spectator.co.uk/2015/10/the-art-of-dying-well/

Dr Margaret McCartney is a GP in Glasgow and writes regularly for the BMJ and other publications.