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.

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.

Meeting the NHS

Through family circumstances we attended a NHS Specialist service review stakeholder meeting today. A motivated team took 25 or so patients and relatives through the process of discovering what was good about the services we used and ways these could be improved. Introduced us to Patient outcome measures and got a variety of suggestions - some easier to measure and therefore manage than others. The time was more productive than expected and left me feeling positive about ways things may change. How much political will and financial resource there is remains to be seen.
Are such events powerful enough to engineer change? What if services don't change - what of the investment made by all concerned today?