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.

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 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.

Ars Moriendi: The art of dying - Wellcome Collection

Ars Moriendi: The art of dying - Wellcome Collection
This looks fabulous; see the link below left to the Wellcome blog for the artist Joanna Walsh's inspiration and ideas. It captures hospice life so well; the exhibition will be well worth the diversion - just 5 minutes from Euston Station. Go in there!

Parliamentary debate on hospices

Summary of the debate via Help the hospices site on http://www.helpthehospices.org.uk/our-services/running-your-hospice/policy/news/health-reforms-and-hospice-care/

And details via Hansard http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110202/debtext/110202-0005.htm#11020266000100