POMPOM days and diabetes

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I’ve been quiet about my diabetes recently. When the rest of my life crowds in, a busy time, the amount of head time I have to spend on thinking about diabetes declines. So I am in the middle of a busy time of my life, especially at work, where we have been going through major organisational change.

Diabetes sugarThat is one of the issues about diabetes, it is relentless and you never get a day off. So I am living with the consequences of my lack of attention over the last few months, my blood glucose of late has been higher than I would like and I feel much more tired than usual. It’s a vicious circle and pushes me towards avoidance of a HbA1c assessment and any conversation with anyone about it really (you have no idea how much I have had to push myself to write this down). I really don’t want to hear the bad news from the DSN about an elevated HbA1c.

Although not written about extensively some commentators refer to something called ‘diabetes burnout ‘a term given to the state of disillusion, frustration and submission to the condition of diabetes. When people reach this place they ignore their diabetes, I assume in an effort to find some respite for the unremitting responsibility and thinking that diabetes places upon an individual. I can understand this as diabetes is there for every second of every day and doesn’t just affect me when I eat but affects almost everything; I have to test my blood glucose before driving my car, going to bed, every meal, any exercise, any stress, travelling – actually almost anything that is just part of living.

People with diabetes in my experience don’t usually want sympathy – it’s more of an understanding and forgiveness for those days when it just seems like it’s too much to cope with. Non-patronising encouragement works well for me and focussing on things that are good. I dread a discussion about a ‘poor’ HbA1c which feels more akin to a school report where I know I didn’t revise.

Diabetes BG testingWe know that people with diabetes are much more likely to suffer from depression but this paper also highlights that we know less about diabetes and anxiety and the impact on well-being. It urges nurses working with people with diabetes to be aware of the psychological impact of diabetes. It’s worth a read.

http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/1161/files/pdf/jdn14-5_190-5.pdf

If you have diabetes or care for someone with diabetes and you feel you may be depressed there is useful information on the Diabetes UK site here:

http://www.diabetes.org.uk/Guide-to-diabetes/Care-homes/Mental-health/Depression/

I tweeted that I was feeling fed up about my continuously (or so it feels) too high blood glucose readings and I was told I was having a ‘POMPOM’ day (I know it wasn’t meant in a bad way :0)  for the person who tweeted it!).  I hadn’t heard the description ‘POMPOM’ before and can find no information about it on the web but apparently it comes from the Expert Patient Programme and stands for ‘Poor Old Me, Poor Old Me!’. I have to say I did have a bit of a reaction as sometimes I think I just want diabetes to ‘sling it’s hook’ and give me a day off – I am only human after all!  I’m not sure POMPOM is a useful description of how it feels those days when I honestly don’t want to be bothered as I have far too many other things going on.

Woman alone

So – I’m fine – I know I’m resilient but I must get back my concentration and do some exercise. That’s my action plan!

Never, ever back off a challenge! Update on Florence Nightingale Foundation Scholarship

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It’s a few months now since I was given my Florence Nightingale Burdett Trust Leadership Scholarship – I’m starting to feel the pressure, yes, I actually have to do something (!) but this week I started to work on how I might add some value through my project.

social media networkI knew I wanted to think more about social media and how professionals behave alongside the public in these digital spaces; I am keen that we recognise the potential for social media, as well as the usual rules that we seem to need to establish, in terms of ‘you must do this’ but more usually ‘you must never do this!’.

I want to interview new people who may not usually get heard in the health space, this includes people who use health services but also those outside the sector. It was this in mind that I travelled to Plymouth Plymouth 2to see Steve Wheeler (@timbuckteeth). I have known about Steve for a while and follow his blog, which almost always makes me think. It was a real privilege to meet him – to put it into context his blogs get massive numbers of reads and comments and his following on Twitter is almost 20,000.

This is how Steve describes himself on Twitter:

‘Web 2.0 researcher, author of The Digital Classroom, Associate Professor of learning technology, Associate Professor of learning technology in the Faculty of Health, Education and Society, at Plymouth Universityinternational speaker, disruptive activist.’

Steve, amongst his many research interests, is interested in Web 2.0 social technology. Steve’s blog is called ‘Learning with e’s’.

I had a long chat to Steve about my scholarship and what I was interested in. Essentially I am interested in trying to help health professionals make the most of the opportunities that social media presents, not just for professional development but also to work with patients and citizens.

Steve has some interesting views about social media and how we interact with it. He is generous and knowledgeable. I made the mistake of asking him how he would tackle the questions I was asking and he came back as quick as a flash – ‘make a video documentary’ – he says. I paused for about 20 seconds and said ‘I’m going to do that’.

Steve Wheeler 1

So here we are. I have no video equipment and no experience of audio-visual ‘stuff’ but there is nothing I like more, than a challenge. It made me reflect on myself as a person and why I always end up with the strangest jobs and doing the things everyone says won’t work, or are too hard – I like it that way 

So I will be going back to Plymouth at some point to video Steve and to put down on record my exploration of social media for my scholarship – putting the output on YouTube seems fitting somehow.

My very great thanks to Steve, Pam (@pam007Nelmes) who arranged the meetings for me and the delightful Ray, Professor of Informatics also at Plymouth (@rjonesplymouth) for his insights and looking after me

If you want to try a taster of Steve’s blogs try this one on digital tribes – I promise it will make you think too.

PS – There is still time to apply for a Scholarship – look here and why not have a go – its a fantastic opportunity!

#NHSChangeDay pledge – ward dashboards and dictation

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NHS+Change+Day_logo_calendar_png_5_____On NHS Change Day I committed to make more effort to visit front-line services that were using technology with an increased effort to understand the issues they face and to learn from them.

In a national role it is easy to feel disconnected from the front-line.  I already work an occasional shift on a ward, which certainly keeps me grounded, but in my role I am expected to have a really wide understanding of things related to informatics and in truth it’s a real challenge; not only do you have to keep up with the technology, which is going so fast, but also a wide understanding of how care is delivered.  I understand that I will never know everything about all of this and I never offer views about things I genuinely don’t understand, preferring instead to try to network people together who do know, but it is nevertheless essential that I have a broad understanding.  My visits are an attempt to make sure I increase my awareness and am genuinely doing my best to represent the profession in the wide ranging discussions I get involved in – I like to evidence my conversations where I can.

technology future

I arranged a visit to Northumberland Tyne and Wear NHS Foundation Trust.   angel of the northI had a great day – everywhere I have ever been to visit has always made me really welcome and North Eastern folk are renowned for their friendliness and hospitality.  I had to drive for 2 ¼ hours to reach the site but this was eased a little buy having to drive past the Angel of the North which I love.

There were two things they were showing me:

The first was the ward dashboard.  This is a great project.  The word dashboard implies something that shows performance against some targets, theirs is so much more than that.  They have moved the concept on a step and the dashboard is more of a knowledge centre.  They do have a screen that shows the key targets for them where they are using the Royal College of Psychiatrists ‘Accreditation for In-patient Mental Health Services’ (AIMS). These standards are a key quality improvement driver for them – you can read more about AIMS here:

http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/qualityandaccreditation/psychiatricwards/aims.aspx

The interesting thing for me about what they have done is they have gone beyond using the dashboard as just displaying performance and turned it into a knowledge centre.  There are many resources that staff can use that can help them to do the best quality work; evidence based assessment scales, forms, pathways – in fact a really useful resource for staff arranged in a central location that is kept up to date and fresh – I really liked it.

The second part of my visit was fascinating; first of all I want to tell you a story:

Imagine you are a community psychiatric nurse and you have just visited a psychotic patient.  They have complex needs and you leave their home and you know need to document the visit, it’s Friday and if anything happens over the weekend you want your notes to be available in the electronic system.  You pull your small car around the corner into a safe parking place and pull out your laptop.  You know you can connect but it’s a bit of a struggle, you have to turn around in your seat to open the lid of the laptop.  It takes your around 45 minutes to key in the information and you sigh with relief, stretch out and close the laptop down when you are finished.

IMG_1069

This is a real situation for many mobile staff.  Access to electronic systems has improved, so has equipment but inputting information into most devices in a car is a real challenge.

In NTW they were finding that clinical staff were regularly spending significant portions of their working day typing clinical documentation, in fact they were often spending longer documenting than actually seeing the patient.  Nurses are not always the best typists and the time taken to type into records can be laborious and was creating inefficiencies in the way they used their time.

The trust came up with an innovative way to try to tackle this problem – dictation – and it works! So the nurse now has a Blackberry into which she/he dictates a summary of the visit.  The recording is sent immediately to a dictation team who enter the information in draft form into the record.  By the time the nurse gets back to her home or base all she/he has to do is to check and authorise the entry.  It takes around 8 minutes for a long entry but many take less.  The results are impressive.

I spoke to a fantastic CPN who showed me how she worked.  She told me that it is difficult at first, dictation of records is not a skill nurses are taught and it feels strange but they developed some prompt sheets and a way of working that means they soon gain confidence.  Hannah, the CPN, had managed to save so much of her time that she had taken on extra duties assessing referrals to reduce waiting times – she was a really impressive nurse!

These images show an average day before and after dictation (the red is admin time, green patient time and yellow travel) for another CPN.  Its sampled days and not averaged but still gives an impressive perspective:

before dictationafter dictation

This is just a pilot for NTW, they have more work to do to see if they can make this work efficiently and at scale, but it really got me thinking.  I have done some web-surfing and nearly all of the work that has been done in dictation is for doctors in acute settings and concerns off-shoring of dictation but it could really make a difference for lots of community nurses too.  It demands that we develop new skills and ways of working but the early results in NTW are very impressive and worth exploration.

My visit achieved exactly what I had hoped for – my thinking has changed and I have new ambitions for the way electronic records could operate.  Thank you to all the staff at NTW NHS Foundation Trust who generously gave up their time for me – I am very grateful.

Have things improved since 1993?

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Can you remember what you were doing in 1993? I can – I failed to get the job I thought I really, really wanted.  What was the job? It was the out-patient services manager in a very large acute hospital.  I wanted the job because I wanted to make things better.  I had been handling complaints for a little while and by far the greatest number seemed to be about out-patients; the out-patient manager and I had a great relationship but we never seemed to be able to make things ‘better’.  He was retiring and I wanted to ‘have a go’!

Waiting room

 

In 1993 the Patients Charter was published and we had a big push on reducing waiting times in clinics and starting using bar coding to record how long patients spent waiting.  We even tried using some computer modelling to try to improve things but I’m not sure we really made any difference.  I looked at  complaints data for 2011-12 and 27% of complaints were still about out-patients .  It started me wondering if we were making any real improvements and are we tackling the right issues?


https://catalogue.ic.nhs.uk/publications/patient/complaints/data-writ-comp-nhs-2011-2012/data-writ-comp-nhs-2011-2012-rep.pdf

How do I know that we didn’t improve things?  First of all, my experience of clinics, as a patient, has barely changed since I first entered the healthcare system in 1979.  Clinics are still the same in 2013 as 1979, with the possible exception that I am more likely to be seen more promptly.  But I’m not sure this is what people who attend are really most concerned about.

This week a number of things happened that reminded me of all of this.  While the media is alight with stories of 111, I have been thinking of more commonplace things.  Out-patient clinics are important places.  People’s lives are irrevocably changed in them; people are given life changing news, sometimes good and sometimes not so good and on occasions down right devastating.  For me all clinic visits provoke anxiety and an institutionalised behaviour where I sometimes surprise myself.  I become very compliant no matter what staff do, say or how they behave.  Over the last few years, perhaps with increasing age I have been a bit more confident with the medical staff but I admit I’m scared of the reception staff.  In addition I have never ever heard a doctor or nurse say ‘I’m so looking forward to clinic today’ – in fact this week a middle ranking doctor told me he hated being in clinic.  I’m not sure if he is unusual or not.

This week this brilliant inspired posting on Patient Opinion reminded me of all of this – clearly I am not alone.  Please follow this link and read this feedback:


https://www.patientopinion.org.uk/opinions/94942

The same week that I read this I also tripped up over a blog by a medic that I really liked.  He was reflecting on the experience of withdrawing money in India from a bank and compared this to the admission process here at home – I think he has a point and what’s more it also applies to many types of out-patient clinic.  I have stopped asking for the ‘one-stop-clinic’ where I can get everything done too – I just suffer the shuffle from one waiting chair to the next.


http://britishgeriatricssociety.wordpress.com/2013/04/29/streamlining-admissions/

Another blogger @mandyhall84 also describes her experiences here:


http://geektapestry.wordpress.com/2013/05/01/how-to-blob-the-square-of-the-op-process/

A lot of people visit out-patients – if I’ve got this right from the HSCIC information, there were around 6.5 million visits to out-patients in 2011/12 – that’s a big number. A review of issues relating to ‘appointments’ on Patient Opinion show a mixed bag of excellent to poor feedback.call bell

 

 

In all the time I have had diabetes I have never met another person with diabetes or a pump in the clinic area.  I believe there is great scope for improving things and using at least some clinics in different ways to support patients.  I feel confident that if the new modern out-patient staff had vision they would consider using a co-production approach to reviewing how we deliver these services – maybe they are?  Perhaps it’s just my personal experience, and I don’t like to generalise, but finally I would like to leave you with this paper by John Launer, whose writing I greatly admire:


http://pmj.bmj.com/content/88/1040/361.full

Why are we still getting it so wrong?

waiting chairs

Co-production and hope

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Sometimes being so active online is a challenge – the amount of information that is thrown at me in various media is huge and it’s difficult to keep focussed and sift out those things I need to remember in a way that is more than passing interest. This specific blog is to help me to do that – to focus in on two things that I think are important that have struck me over the last week; the first is the parable of the blobs and squares and the second is the importance of young people and hope (my blog also includes paperclips!)Paperclips

The Parable of the Blobs and Squares
The parable of the blobs and squares was brought to me through the fabulous #leaders4leeds and specifically @smclrk . It really made me think about the concept of institutionalisation and how we treat and care for patients as well as how we resolve issues and consult with communities. By institutionalisation, in this context, I mean we force, through absence of choice, people who come into contact with our services to behave in a particular way. As a result they are less likely to choose or adopt any other approach or behaviour – as a result we may fail to capitalise on their knowledge, expertise and creativity.parable of blobs and squares

You can watch the short video that explains about blobs and squares here:  

You see when I am a patient I’m quite blobby; I don’t like to be processed like a sausage and I suspect that because of what I know and what I do for a living I feel quite blobby to the people who help me too. It’s not unusual for a nurse or doctor who doesn’t know me to quite quickly ask me ‘can I ask what you ‘do’?’ – I suspect despite my best efforts to conform I can be quite challenging and blobby.
But then our systems are often set up to be very square and sometimes when I’m at work I’m square too. We are often forced into designing processes that feel inflexible to the receiver; my clinic appointments often feel like this but conversely I have been responsible for clinics too and sometimes it feel impossible to do anything else other than design them as processes and in the way we do.

The parable of the blobs and squares points to different way to try to resolve the problems we face – that is co-production. The concept includes employing more ‘blobby’ people who can work across the interface between the square organisation and those people who have the needs that we need to meet – known also as boundary spanners. bridgeSo, for example, I wonder if clinics would look the same for patients with long term conditions like diabetes if we were to co-design them with patients…… I for one would be lobbying for perhaps more group orientated and social spaces. When I think back to the time I got my pump although my lovely Diabetes Specialist Nurse went through all the technical parts of learning to use the pump I would have loved to meet someone who was already a pump user. My only contact with those people has been online on Twitter. I see this as a real missed opportunity to build expertise amongst patient and perhaps more resilience and less dependence.

I recommend the Parable of the Blobs and Squares to you.
Hope
My second major thought this week is the importance of ‘hope’. It feels like there is negative pressure across the whole system at the moment – sometimes so much so that it feels scary. Hope makes it possible to lead and to see a vision of how things can be better and is vital if we are to cope with the challenges we all face.
Hope can come from unexpected places or at unexpected times but I see a pattern emerging for me and how I might be able to stay focussed on building hope. You may recall from my previous blog about the Florence Nightingale Foundation Conference how I was struck by @ruthcarnall who talked about emerging leaders and how we had a responsibility to help them to grow and lead? This week I also witnessed a young person who shone hope across nursing – Molly Case’s poem ‘Nursing the Nation’ at the RCN Congress 2013 had ‘hope’ written all over it.

 http://www.youtube.com/watch?v=XOCda6OiYpg
I also found another group of inspiring young leaders this week who again gave me great hope. Have you heard of the #StC Paperclip challenge? You can read about it here:Paperclip challenge


http://learningdisabilitynurse.com/stc-paperclip-challenge

This is a brilliant and brave idea led by a group of nurses that again gave me optimism and hope. Watch the video and be inspired!

My son also gives me hope. He is young dedicated and passionate about what he does. He doesn’t get everything right but then I didn’t either and I had to learn to be the best I could be – in fact I’m still learning actively!

 So I can see sparkling and shining lights of hope in the system and they are often linked to young people. I am going to make sure I give as much help and support to young people in our system as I can; Hopethey need the chance to make a difference and the confidence to challenge the status quo. I will be trying to support and mentor as many of them as I can!

“Only in the darkness can you see the stars” Martin Luther King Jnr
“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” Barack Obama

Is digital enough?

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Twitter is fantastic as a place to have great conversations that wouldn’t be possible without this digital space – I love it – but again today I had another fantastic Tweetup, that is a face-to-face meeting with someone I first met on Twitter. It seems to me that as my twitter relationships evolve I instinctively want to make the effort to meet the person face-to-face. For me, it seems that for the required depth of some of the relationships, digital just isn’t enough. So what happened today was a little bit of face-to-face magic with @smclrk where I learnt so much and started to form a relationship that I hope will endure, that Twitter conversations alone would never have achieved.

This led me to think about some of the debates about using technology to deliver care – is digital enough? Many readers of this blog are likely to have read my earlier blog ‘To Whom it May Concern’ – it’s one of my most popular postings – and are likely to note that I seem to be advocating less face-to-face and more digital. Similarly Roy Lilley’s (@roylilley) blog for the KingsFund ‘It’s crept up on us’ is saying similar things; we need to recognise that in the world we know today surely technology has a greater role and place. I whole heartedly agree but I find the debates that this generates distracting and extremely frustrating.

The trouble is it sometimes feels like we are looking for a silver bullet, or a single direct approach or solution to the complex challenges we face in delivering care in a changing economic and societal landscape – in truth there is no one solution. complicatedSo why then do commentators persist in saying you can never replace face-to-face with technical solutions, implying that advocates of technology are saying this is the single way? I have never heard any advocate of new ways of using technology or innovation say that this is the case! What they do say is that for some processes (ordering repeat prescriptions for example) or transactions (a query about diabetes control from an experienced patient via email) technology can play a part.

When I went to work at NHS Direct in 1999 I remember being told by other nurses that you can’t care for patients over the telephone. 9184840_sI think this debate is past us now with lots of care being delivered using the telephone; but this is also not without its controversy, if I ever tweet or talk about my personal desire for telephone consultations someone will comment or question to say that I ‘don’t understand’ and that we should always use face-to-face and my heart sinks. I have never said or suggested that we could completely replace face-to-face care. As a person with a long term condition I can say for me that technology can have a role that will improve the quality of my life and (maybe) reduce the cost burden of my multiple hospital visits but equally I need to see my Diabetes Specialist Nurse sometimes for a different sort of conversation that cant be achieved on the phone or via email.

So, is digital enough? I say that it isn’t, and never will be, but it must have a role. Like my experience on Twitter some remote digital relationships are enough but for some, face-to-face is the way to go. My suspicion is that digital will have an increasing role in healthcare but it will never replace the dialogue that we have as human beings who occupy the same room. My plea is can we be balanced in our approach to adoption of new approaches to delivering services using new technologies that may improve the quality of life for some people?