D51 #100WorkingDays what’s at Willen?

 My interest in palliative and end of care had continued since training days. So it was great to see Milton Keynes had its own hospice, that opened in 1981. Our pre-opening visit there enabled our team to understand what was being done there. Built around a listed farm house the  founders had seen, they raised the money to start. It confirmed to me that there would be a place to begin my learning more about hospice based care. 

At that time the local lanes hadn’t all been closed. One close to the hospice was turned into a Redway, the name given to the pedestrian and cycle paths in MK because of the red tarmac used on them. Once closed the area became quieter in terms of through traffic though now lots of pedestrians and cyclists would pass as they travelled around the neighbouring lake. The lakes at Willen had two characters. The southern lake became a water sports area. The northern lake, with the hospice at the north end became a wild fowl reserve with an island. This gave the hospice a calming setting, and great views. 

They had a few beds and a day centre, and were looking to expand in time. There was also a community team of nurse specialists. I made a mental note that this would in time be a place to work. Having just moved to MK I thought it best to wait a while and enjoy the experience of opening the hospital. 

The house of Manor Farm that became Willen Hospice 

D36 #100WorkingDays Picking up hospice care

 My first year began with the familiar proficiencies in recording blood pressure, temperature, and making the hospital corners. We ventured onto wards in little groups to make the beds and get used to interacting with patients. Our training followed the traditional pattern of the time, with blocks of school between allocations to the wards. We spent time on anatomy and physiology as well as the importance of assessing patients.

Wide reading was encouraged and there was increasing information about hospices and how we could make care of the dying better. The work of Cicely Saunders was gaining attention for its focus on the individual patient and the ways we could improve the end of their life. With this in mind my first ward was surprisingly influential.

The ward was led by Ali the Charge Nurse, and supported by Gail the Junior Sister. It was the male Urology ward of 15 beds. Two side rooms each had a patient who was getting closer to dying. The importance of regular analgesia was understood so we used what we had available.This was injections of Diamorphine, an oral alternative was the Brompton cocktail. We were tasked with regularly caring for these men, I was struck by the dignity and effort we were expected to make for their comfort. When the first of them died I was taken through the delivery of last offices. My experience helped me decide that the burgeoning field of hospice and palliative care would be the place to work.

 

Dame Cicely Saunders

By [1], Fair use, https://en.wikipedia.org/w/index.php?curid=22611723

The tea bag, pencil and toffee penny

Having a lead nurse role involves all sorts of activities. The other day I found myself carrying a tea bag, pencil and toffee penny towards my office. I wondered what to make of that handful. No great idea for a blog came to me then. 

In the last few days I’ve learnt more about what can go wrong, and how we can sort things out on wards in hospitals just by listening to people.

My heart felt heavy about what I’d heard; now I have to write a report on what happened and what I’ve heard. 

Being a lead nurse is not always gazing at the bright shiny business development plans that I might have pencilled in.

As a lead nurse I have lots of people in my care. The team I’m in are great fun to work with, who work very hard. Part of each day is dedicated often implicitly to looking after ourselves, by having drinks and making sure we stop for a lunchtime break. One way to support them is to make the drinks; a simple job (if I remember who wants decaf black coffee, who likes their tea dark with a dash of milk, all in the right mugs) that’s one way to show support. Making sure I have a cuppa on occasion means dipping into the tea bag tin.

The lead nurse sets the tone for the team, and those they come into contact with. There are the days when our Palliative and end of life work will seem heavy. Even so there’s often an opportunity to celebrate some small positive piece of news and to share a gift from a thankful manager or service user. This Christmas, as happened to many others, we were given some sweets as a way to acknowledge our efforts. Amongst the treats were a selection that included toffee pennies, for which I have a little weakness.

Life as a lead nurse is certainly varied; always interesting and with things to learn. The tea bag, pencil and toffee penny have all served to remind me of that variety and that even from such a disparate handful there will be lessons to learn and even a theme for my 100th blog piece.

Doing things badly can be a good thing?

I have had an interesting week; work has been busy with the team doing good things for patients and each other. All very supportive and a joy that they can be trusted to get on with things.

I’ve had two task this week that needed delivering. One was a business case and the other an opportunity to deliver a 6 minute talk as part of a conference day on human rights in end of Life Care.

The business case would seem straightforward however getting the style right for the (NHS) organisation can be a challenge. Fortunately my boss has plenty of experience in our place of work and whilst I started it not very well I’ve submitted what’s been agreed is a much better version. Anxiety about how it might look and be received is lessened; taking the first step is the worst bit for me.

And that, I’ve just realised, is why blog writing regularly hasn’t been easy either.

So I was interested in reading the article by Olivia Remes that points to the science behind beating anxiety, and why doing something badly is a good idea.

This struck a chord with me; getting started is an act that I can successfully sabotage by myself. So reaching a finishing point (sending the business case for consultation, or posting a blog piece) becomes a cause for internal celebration.

The second task has been longer in development as I’d been invited to contribute to a quick fire afternoon session at the Sue Ryder hosted “Human Rights in End of Life Care” on 27th June. A 6 minute slot was mine, along with three others who are trainers like me. The slides were easy, the content came pretty easily too. It was the prospect of delivery that became a matter of anxiety. There was some rehearsal and having the slides safely loaded in advance were helpful strategies.

The night before was not good in terms of sleep and all that could have gone wrong in terms of travel added an extra layer of worry.

On the day the trip was fine and the venue was easy to find and had a nice auditorium. Even so there were nerves; I’m conscious that a poor presentation does no one any favours. As it happened my little contribution was kindly recorded on my iPad by another speaker. I can see I “immediately” a lot to begin with, and then had some trouble with the slides. I did get a hoped for laugh or two, as well as some serious points made. I could have done better (I believe) though I was told I’d done well.

Olivia is helpful in that she points out that doing something badly (or at least not very well) is a way to combat anxiety. So I’m reminded to be kind to myself; to trust the praise of others and to ignore the internal doubts that will lead to further anxiety.

And maybe there’ll be an increase in the frequency of my blogging?

Ten years on

Reflections on a learning experience 

I know I tend to hoard what I'd call resources to do with work, be it books, papers, certificates and bits of card. "It'll all be useful one day" is my internal mantra. I've been cutting down on books by allowing them to be more widely available at work; that in itself has been liberating as in recent times I've gone back to more 'hands on' hard copy reading.

Whilst preparing this week for a session on resilience I went to my cupboard and found amongst other things the workbook from the excellent St Christopher's multi professional week I attended in May 2006. I recall thinking the whole experience had been exciting and stimulating. Do they still do it? Yes, see http://www.stchristophers.org.uk/education/diary and one is coming up soon.

The attendees came from across the world and we were truly multi professional, adding further texture to the week.

The opportunity to learn from David Oliviere, Malcolm Payne, Nigel Sykes, Barbara Monroe, Nigel Hartley, Avril Jackson, amongst other talented colleagues was so invigorating.

I still remember much of what was said and done; from giving instructions on making tea, digital pebbles, spirituality, teamwork and with role play thrown in the international participants were challenged to think, act and learn.

So what's brought this all about? I'm still teaching on occasion so a dive into the resources led to me think about the workbook. I was sure there were pearls of wisdom to find and was right (on managing stress and teamwork). So ten years later I can hold the pages and how that itself has changed. Hospice UK can put entire conference abstracts, posters and videos on line - an example of the revolution in the way we communicate and produce materials. I wonder what those who will attend my session will recall of the session next week, and in 10 years time. How will they access our presentation, will a virtual channel have the same physical and intellectual resonance as my purple covered booklet? 

Maybe the physical presence of thoughts, ideas and reflections last longer in the memory? I need an educationalist to confirm that; may be though that the way that week was organised and led has left this influential mark. It's a  been a powerful experience revisiting these materials; reflection and development distilling an enervating week in one afternoon.

A challenge or piece of cake? Being person centred in a hospice environment.

 The opportunity to begin the introduction of looking at how person centred our practices is at St Clare Hospice is too good to miss. Starting with the use of my one page profile #Onepp (1PP) as I began my current role I wanted to expose my new colleagues to what is a different way of thinking about care. 

Why bother when we could say we practice the best holistic care with all our patients? 

I am concerned that holistic care is a blanket term for care structures and processes that are uniform. The care cannot be person centred if the same care model is used in the same way for all. Being person centred is about making what is important to the person central to planning and organisingtheir end of life care, and crucially the person concerned is involved in the preparation. So whilst taking the same approach to care planning the result is individualised care that is set up around what works and what does not for each person. 

In the following stage I have begun work with the inpatient unit team to review just how person centred the unit practice is. We are using the Progress for Providers – End of Life tool from Helen Sanderson Associates to see how person centered our current practice is. This is available electronically too. The group are meeting and working through the tool; I am letting them take the lead so they are ready to own the action plan and next stage of work. 

At the same time I’m seeking support from senior managers and our Board to make sure they understand what we are doing. Once we have completed the assessment stage we can use the tool to create the action plans and priorities for action. The intention is to spread the use of the tool across all our services at St Clare Hospice as we take on an increasingly person centered approach.

I find this an exciting time as teams look afresh at what they do and how they perceive the care they give. I believe it will help us see the relationship we have with those who use our services in a new light as we focus on the person who needs support towards the end of their life. I look forward to telling you more as we progress. And at that point I hope we will be ready to face any challenge, and being a hospice be armed to face it with plenty of cake.

Philip Ball

Director of Patient Care, St Clare Hospice, Hastingwood, Essex.

The times ahead...

Sharing Times

I have been reading recent news items and blogs all reated to end of life care; a recent blog update from Dr Kate Granger, @GrangerKate and via ehospice profile pieces. Kate Granger is no stranger to many social media users; her open door policy gives an insight into the kind of dialogue an individual can have with the cancer they have. Out of Kate's experience has come the '#hellomynameis...' campaign, encouraging everyone to introduce themselves as they deliver care. Just yesterday, while having a simple ultrasound the technician and consultant introduced themselves and asked a little about me as we got ready; the gel was nicely warmed too. I felt valued, and that my part of the preparation was appreciated making the procedure easier for all.
Reading a piece about the Buddhist approach to the end of life and death; an interesting refresher, I found myself wondering about the reality of mindfulness and meditation when thrust into the milieu of care provision. How far can our minds takes us to places of such self awareness that pain and discomfort are reduced? It was a salutory lesson; I am reminded that there are many people who have experiences very different to me yet our paths will cross because of a diagnosis and care system.
How we treat each other, and the room we give each other to hold our beliefs is critical to our future relationship and the benefit that sharing of our selves brings.

A terrible thing to have to write...

In the last 24 hours a couple of  social media interactions have linked together to cause me to write. One is ongoing and concerns the care of a dying person; having worked in Hospice and palliative care  for a couple of decades I can claim to know something about this. Added to this is my experience of end of life care that started on my first ward as a student nurse, that was even longer ago.    Follow @nursemaiden on Twitter to see the story unfold, in real time.
The other link was made this morning as I read @RoyLilley and his blog piece of today, see It's all going horribly wrong

As a service provider I am dealing with several commissioners, except there don't seem to be any out there. There are well intentioned folk in positions that have no decision making power; there is no-one in place in their organisation who can negotiate or decide what to do about the current financial year let alone the next one. In the meantime services go on being poor inequitable and not joined up. Commissioning is getting a bad name through this; as Roy Lilley points out the layers of interference and in my view obfuscation are causing serious problems;  in particular I find in creating change on the ground. 

We are not seeing a new dawn of person focused services - despite the efforts of providers to work that way; we are seeing a shuffle of the layers of control - a shuffle in inexpert hands that will be a whole lot messier than 52 card pick up. It is leading to a dying of the light in which the rules and regulations over reporting and numbers will lead decisions on the provision of care. I'm not convinced that concerns about the money (spending or saving) are behind the decisions; only being in a place where having control counts.

All around us though the dying, frail and vulnerable of all ages are only being supported by dedicated on the ground staffs day by day. Often they are kept from doing the right thing by the 'rulers' or vacuum and this is leading to provision of poor, less than best services and no sign that things will improve soon. That is a terrible thing thing to have to write in 2012.

End of life decisions

Here is an interesting piece about writing your own advanced directive on end of life care.
There is a lot of interesting stuff coming from the USA on this.
Enjoy Larry Berresford's piece on http://www.nhdd.org/2011/03/completing-my-own-advance-directiveand.html#