“We apologise for this late arrival...”

 So now it is 2025 and I have decided to return to a refreshed blog. The last year has been a trial of my (mainly physical) health. I needed steroids to dampen down polymyalgia rheumatica which brought on steroid induced diabetes.  I am now steroid free, the blood sugars on my low carb, full fat diet are much lower (see freshwell) and my weight has stabilised at what is about right for my height.  During all this I've awaited two relatively minor surgeries. The NHS is so good it is said when an emergency arises. The wait for non-emergency (elective) surgery, is often long which is frustrating, and at times costly, in terms of keeping comfortable and safe whilst waiting. 

In the last couple of weeks I have had my prostate reduced, it is expected to be cancer free but awaiting confirmation of that. It didn't go quite as expected so an uncomfortable week went by whilst I did my best to drink the world dry. All is beginning to get to get better now and for that I am very grateful. I had however to push to get the surgery done as I need a hernia fixing too. The local hospital was getting ready to do that but I had been told the prostate needing fixing first. There was no inter-departmental communication between surgical specialties that would have helped avoid the delays. This patient has had to do the organising. Given the level of computer based record keeping that exists it adds another layer of frustration.

So you can see why there's been an impact on what I call my mental health too. That being so the last 12 months have not been without bright spots too. There have been travels to see good friends, and taking forward my ambition to do more drawing and painting. Canada, New Zealand, France have been further destinations, while Brighton and Bath have been examples closer to home. In two of that list we saw friends who have since died. Whilst immensely sad about Tim and Chris, who are greatly missed, we were pleased to have spent time with them.

Even closer to home was a Garden Party at Buckingham Palace which on an warm sunny May day was most enjoyable. As ever though the joy of being granddad stands out. Making a den in the back garden, getting messy with flour while making biscuits, singing, train rides, and sharing stories are part of that picture.

Using stories to help understand death, dying, hospice care, and nursing is something I got used to. And a new development opportunity has arisen through the Anne Robson Trust. I have been recruited as a freelance trainer for the 'Simple Wisdom' course they offer. It‘s given me something else to look forward to, as I share examples from my life to help others develop confidence when death and dying arises in their lives. It's never too late to learn about these things, so it is timely unlike this blog piece that's taken too long to come along.

Be brave, honest, open

Inspired to write today by a blog from Tony Warne (an impressively regular writer) I wanted to reflect on the report from the BBC about the lack of cultural competency in hospices. Based on research conducted by LOROS Hospice and Leicestershire Hospitals I wasn’t surprised (sadly) by the findings and the call to action.

I’m aware that many hospices have been trying to engage with those in their surrounding communities. Offering the opportunity to share information about services, and to learn more about the perceptions their neighbours have about hospices.

We now have a greater understanding of the importance of being able to talk about death and dying, and the difficulties nurses, doctors and others involved in caring for those who’re dying face. How important is it that we reframe hospice and Palliative Care services? In my professional lifetime many cancers have become more of a long term condition though still with notable exceptions such as pancreatic cancer. The focus has shifted to supporting those with longer term conditions to get the best out of their situation as they can. Hospices can, and do, help with that.

Perhaps hospices should move to being a community health hub, where services reach out into people’s homes and tackle loneliness, poor physical environmental conditions, encourage finding ways to improve individual’s health and bringing forward the conversations about death and dying.

As cultural norms shift we have to recognise that some changes have left us afraid to address these issues. Time to be brave, be honest and be open; a call to all who believe that being open about living before dying is important to all those around us.

Times for tears

I have recently wondered if had been developing hay fever; I've had ‘leaky eyes’ and perhaps a few sniffles at various times. I'm pretty sure though that there have been times when I've shed tears. As family will tell you simple things on tv will set me off; dare I say it extreme reactions to great acts on Britain’s Got Talent is an example.

At other times though other things have acted to set me off. Frustration at my own actions; delight in others successes; hearing inspirational stories and hearing news of those who have died.
After a busy time at work and recent terrorist acts in the U.K. I found myself suddenly anxious too. This caused me to reflect on what life was like at the heart of the Irish ‘troubles’ when I spent lots more time in central London. As I write I feel much less troubled about risks particularly as I commute by car each day.

What sparks the tears though? As I've reflected on my career in recent times I've recalled times of sorrow and delight. I've said before that my passion is about getting end of life care right for those who are dying. I've also said that in the position I'm in now means I have many people that I care for in our organisation. My actions can have ramifications that are unexpected; to get it wrong as I've owned I might do before, is frustrating though it becomes a vital learning experience. 
A contrast to this is seeing the investment in others resulting in their development; finding ways to study and change their lives as well as simply passing on messages of a thanks for a job well done is another cause for celebration. Yes, a potentially tear jerking time.

Obituaries of people who've been in the public eye, such as Peter Sallis who had entertained me for so long can induce a weepy episode, particularly when set alongside the news of multiple killings on Manchester and London streets. One person I recalled was Lawrence S. Newcombe who died in 1987 (with 30 others) helping another person in the King’s Cross fire; he trained as a nurse at the same hospital as me and I recall him as a force of nature.

My joy at the achievements of others has been filled today as one son, who is proudly part of the NHS has passed his training course and now has heard he has a job in the department he works in. Lastly however the inspirational story telling by people such as Tommy Whitelaw provokes my lacrimal ducts; he reminds me of the importance of knowing something of the person I'm with and finding out about their story. Being able to share our emotional reaction with those around us is powerful and emphasises our joint humanity. Allowing times for tears is as useful as sharing laughter; for me it's important we're open about this too. 

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.

70 degrees of separation

Many will be familiar with the idea that there only 6 degrees of separation between ourselves and others; there are only a few connections between us all whether famous or not. I'm talking about two different places I've visited where the temperature has been separated by 70 degrees Celsius.

It was early 1999 when I joined palliative care colleagues in a visit to Kemerovo in Siberia where one day the temperature was a challenging -35 degrees; currently I'm in Potchefstroom South Africa where I've been able to enjoy +35 degrees. The link is once again sharing my experiences in palliative and end of life care, recognizing I've worked in this area of practice for 25 years. 
So why here in Potch? My partner Megan has been invited here to be an Extraordinary Professor at North-West University Potchefstroom campus, in the School of Education. As her term of office begins we came here at the invitation of the Uni team. I was just going to be a hanger-on for the two weeks, reveling in the first two week break from work for some time. The Uni team had other ideas and recognizing I had my own area of expertise, in end of life care put me me in touch with the Education psychology and nursing departments of NWU. The upshot has been an opportunity to visit the local hospital and to deliver a presentation to two groups at NWU about ethics in end of life care as well as having difficult conversations. In between we have been able to share meals and time traveling in the area, visiting schools and a game park. All very interesting, though the game park details will have to wait another day. 
The two visits have taken place in places undergoing significant change, in political, cultural and social senses. In addition the organisation of resources for health and education has changed. For brevities sake I'll focus on our current visit, that's starting about 150km SW of Johannesburg.

We have experienced great generosity - time, food and drink, and travel. I hadn't realised just how big a country South Africa is. Our travels have included 3-4 hour drives and we have covered only a small part of one province. We're flying to Cape Town later; the time it takes would get us to the Mediterranean from southern UK. For many here though travel is a luxury with poor public transport; so travel from rural areas to the nearest healthcare provision is only undertaken when you're very sick. The result means many arrive at the state funded hospitals in towns like Potch (where there is no hospice) with advanced diseases and in need of end of life care. Being HIV+ is very common and so is tuberculosis, often going together. Getting people to understand the importance of maintaining the anti-viral therapies and the long  term TB treatments is an important priority. The message of changing behaviour about sex and HIV transmission is loud and strong yet some feel that the very strength of the message over a long  time is counterproductive.

The opportunities to meet students and colleagues at the university and hospital have been invaluable to help understand the joys and difficulties of life here. That people are trying to improve services is encouraging yet difficult given the differences of resource provision between provinces. This was highlighted in the difference in the number of educational psychologists in the Western Cape area approx 130, and the 4 in the North Western Cape where we are. Seeing the expertise and enterprise of North-West University in making links with Potchefstroom Hospital, to the benefit of patients and psychology students has been great to see. End of life care is a big part of what the hospital does so sharing my expertise and stories has been a pleasure and made this leave from work so much more rewarding. It has also helped me to appreciate the fund of examples and experiences I've had, as well as realise there is lots more for me to learn. I'm immensely grateful for the opportunities my career has thrown up; I never expected these travels. I am very pleased though that there is now far less than 70 degrees of separation between my understanding of what's happening in South Africa and my working life at home.

Putting pathways into perspective

Once again I'm exercising the slow blog style; of late the concerns about care pathways have been in the thoughts of many, particularly in end of life care.
The recent report on the Liverpool care of the dying pathway, (LCP)  'More Care: less pathway...' by a group chaired by Baroness Julia Neuberger has led to much soul searching  particularly amongst those who had time to learn how to use the LCP correctly. 

Proper use of the LCP tool (its just one tool - not a whole toolkit) left people at the end of life (who are be believed to be within approximately 72 hours of dying, as far as professional judgement can be accurate) freed from unnecessary treatments and interventions; it enabled all those involved to have an understanding of what was happening, with a mutually agreed approach towards letting the death happen whilst keeping comfort, dignity and respect for the dying person at the forefront of the care that needed to be delivered.
The report speaks of evidence of good practice yet it reaches the conclusion that the LCP should be left behind as, in the name of the LCP, much poor care of the dying had taken place. I believe it likely that the poor care would have taken place anyway as there would have to be a culture of accepting poor care, to allow misuse of a tool such as the LCP.

Healthcare professionals do need to be careful about terms such as care pathway; it is all too easy to take a professional short cut when faced with pressures of work. In the last week research undertaken by Dr Kristian Pollock  highlights the effects busy-ness for care staff has on their ability to interact with the dying person on hospital wards.
So this got me thinking about pathways; whilst taking a train journey a few days ago I listed pathways I could think of:

• Stepping stones
• Gravel
• Wooden deck
• Grass
• Slabs
• Bricks
• Mud
• Tarmac

We have nearly all these in our garden; some very short, not easy or pleasant  to use; others take us on a longer route past lavender and herbs; have better views, and are much easier on the feet. So what's my point?

We should carefully consider facilitating choices for the dying person, beginning with a personalised approach to planning for their end of life. A care pathway that does not allow for deviation from the route is limiting. It's a bit like going round a stately home following the arrows  under the beady eyes of the custodians. Had healthcare workers fallen into that way of thinking with the LCP? Only one way to travel, no matter how welcome or not you may be; ignoring vital information and potential options for alternatives because the 'pathway' is well fixed.

Lets get out the maps, and look at the routes we can travel with the dying person toward their death. We will need to be flexible; prepared to risk going "off piste"; getting dirty and even lost. The important thing will be not to leave those who are dying thinking they are alone. 

Be creative and passionate about what you are doing; take them into your relationship with the dying person while they explore the pathway(s) to take.

The funeral of a friend who was a nurse

Working in palliative care, the end of life is a daily event, but today it touched me personally. I, and many others, attended a gathering and well attended reunion at the local Crematorium. We were there to remember our friend, boss, peer and co-worker. Of course there many family there too. Her husband had also worked with us. Jenni took the development of Willen Hospice, and its clinical services to a point where a 20 bed inpatient unit was complimented by all the community services with back up from incredible fund raising and retail support.
I know too that Jenni would play down her part, understandably pointing to the team effort involved.

Jenni had trained as a nurse, and went on later to manage a variety of services after leaving the hospice. Whilst care of the patients was at the forefront of her mind Jenni also had the care and development of her staff alongside this too. I think this is why so many turned up today, from all sections of the hospice, current staff and those who have moved on or been wise enough to retire. Many of the people there today came from Willen. I was lucky enough to have two bites of the cherry working there, both times Jenni took me on under her wing. In many ways these two appointments were critical to me in the development of my career, particularly in palliative and end of life care, and in taking me forward as a service manager. 

Whatever the role, Jenni had touched all these lives as well as all the lives of all those whom the Hospice has cared for. As such then the turnout today was a reflection of the esteem and affection we had for her. That a malignant disease should be the cause of her death at so young an age is another part of the story. 

Alongside that is her reputation for enjoying a night out. In the company of friends and co-workers the loudest laugh was hers. A love of gin, as well as other drinks if required, fueled many an evening. Of course Jenni loved her job and her family; she will be much missed.
Jenni leaves a significant legacy; people who continue to clean, cook and care for those who are frail and nearing the ends of their lives; those who have been encouraged to take chances, develop as people and as servants of those who need the care.
At a time when healthcare and nursing particularly are being frowned upon, and the NHS seems to be falling apart, I am proud to say Jenni was someone who taught us all how to do it right; how to enjoy work; and how to make a difference.  I am very happy to have known Jenni, though very sad now that she has left our presence. She was a light in our lives, and I look forward to carrying her legacy into the future.

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.

Challenge of end of life care and choices over death

The Telegraph reports comments regarding Dignitas and the view of Pauline Smith (End of life care lead West Midlands NHS Strategic Health Authority) that it is unfair that only those who can afford to go to Switzerland can do so leaving the less well off to die in the NHS. Pauline claims people are helped to die in the UK - but does not back up the claim in the article with evidence.
I can see her philosophical point about inequality of access to Dignitas. I think however it is a minor quibble compared to her neglect of the need to examine the possibility that people may be unlawfully killed. I hope she will bring out the evidence for her claim, yet I doubt there is much to support her view.  The law has it right at present; what needs challenging is the belief that somehow the law needs such drastic change.
I would expect the priority for all to be working to improve the care of those who are currently dying as Sir Mike Richards says. If we go for the same improvement in the level care for the dying as we've made in cancer care (albeit with more to do) we'll make life, and death much better for all in the UK. The Telegraph article is at http://www.telegraph.co.uk/news/uknews/8343851/NHS-chiefs-back-calls-to-reform-assisted-suicide-law.html?goback=%2Egde_97078_member_44912772