Liverpool Care Pathway - Catch Up EoLC

So what's the latest goss on the cobbles and out in the sticks? Who's dying to see? Let's turn back the epaiges and do some catch-up EoLC.

This is the latest End of Life Partnership Newsletter out in December –

The End of Life Partnership Cheshire is bringing in new Trustees for the Partnership Board of Governors. Pauline Ong, Professor of Health Services Research at Keele University, has been appointed to Chair the new Board.

Ong poses at right in the publicity shot with Salli Jeynes, Director of CHE (Cheshire Hospices Education).

Ong carries out "academic research on the experience of chronic illness and pain, and on the implementation of new interventions in primary care and their impact on health policy and management". She was an NHS non-executive director from 1993 to 2010, the whole period of novel interventions at Gosport and the implementation of the fledgling LCP.

Ong has also been a member of the National Advisory Group for Clinical Audit and Enquiries since 2008.

These people are really taking themselves seriously. This is the update from the Shadow Strategic Partnership Executive (previously called the Shadow Partnership Board) -

Over the last few months, the staff teams from the 3 organisations - Cheshire Hospices Education (CHE), Cheshire Living Well Dying Well (CLWDW) and the End of Life Care Service Model (EoLCSM) - have met on several occasions. Such meetings have helped to integrate teams and plan for future work programmes, and have provided the opportunity to consider the ‘Visions and Values’ for the new organisation. Outputs from these staff meetings have been fed back to the Shadow Strategic Partnership Executive meetings, and as a consequence, the Partnership Name, Strapline, and Mission Statement were all agreed in late October.

The Name will be:

The End of Life Partnership Cheshire (EoLPC)

The Strap Line (a short, easily remembered phrase, or slogan) will be:

Transforming End of Life experience and care

The Mission Statement will be:

A Partnership to lead, educate and facilitate excellence and best practice in palliative and end of life care; and to influence and enable our communities to live and die well, supported by the health, social and voluntary workforce 

This is really grand-sounding stuff. This is the stuff of Bee Wee and her Dying People Alliance.

The partnership has been forging links and sounding out the ground across the water with a visit to the All Ireland Institute of Hospice and Palliative Care (AIIHPC). They have returned with reassurances and encouragement.

These Central & Eastern Cheshire Epaiges (Electronic Prognostic Assessment & Information Guide For End of Life Care [WOW!]) follow the North West End of Life Model.

- EPAIGE

They are  illustrated with lots and lots of lovely flow charts that will delight the eye. So colourful. Amazing; really amazing. They've put so much effort in here. This will keep the student's attention no matter how attention deficit they are. This is as attention catching as that infamous Six Steps Mouse.

This is the Mental Capacity Act (2005) Best Interests Pathway -

- Best Interests Pathway

There is advice on removing unnecessary medication and including shutting down an ICD with the use of a magnet: 

If you require deactivation of an ICD urgently outside office hours, a magnet is available from Macclesfield CCU. This can be strapped to the chest using adhesive tape over the implant site.

Modern ICDs act as pacemakers and defibrillators.

Refresh your Catchup here -

Liverpool Care Pathway - So, Who's Sweeping Up In The Sweepstakes?

The Spict came up for discussion in a very regal and grand-looking setting at a conference workshop in Edinburgh. This is eHospice –

Palliative care in acute settings was the focus of a lively interactive workshop at the recent Scottish Partnerhship for Palliative Care conference in Edinburgh.

In an hour-long session, the attendees were offered an understanding of the Scottish response to providing palliative care in these acute settings, with a focus on advance and anticipatory care planning.

eHospice also gives an update on Living & Dying Well in Scotland -

This update provides information about progress that has been made at a national level, but does not cover work going on at the local level. 

Key developments include:

• the establishment of a new hospice quality improvement forum

• the development of a framework for palliative care for children and young people 

• the launch of The Palliative Care Zone on NHS Inform to provide information to members of the public about palliative and end of life care

• the launch of Good Life, Good Death, Good Grief, an alliance to promote more open discussion about death, dying and bereavement

• a review and update palliative care clinical guidelines is underway

• the development of palliative and end of life care indicators.

The Scottish Partnership for Palliative Care is the "sister" organisation of the NCPC. The NCPC also held a little get-together in November entitled Refreshing the Strategy to make forward plans for the next five years.

Refresh your Catchup here -

Liverpool Care Pathway - The Action Plan

And NHS Scotland announced a National Steering Group to develop one single set of palliative care guidelines for the whole of Scotland -

These will be available from 2014 and the format of these new guidelines will be based upon the existing 'Lothian' palliative care guidelines on this website.

Are they doing a Bee Wee for Scotland?

It's all falling into place this year!

In their houses are many mansions, but one agenda. If that were not so, they would have told you. And, even now, they go to prepare a place for you...

Finally...

Margaret Kendall is reportedly alarmed in The Telegraph at the "scrapping" of the LKP even though she must know full well it's far from scrapped.

She says:

“Anticipatory medication is not being planned, so sometimes patients are in pain and sometimes they are distressed because of respiratory tract secretions. 

“That can be difficult to see for families sitting at the bedside.”

It is this, then, that is at the essence of her motivation: it is all in the perception; it is the objective experience of the onlooker, not the subjective experience of the patient, that counts?

The PROMs will not prompt a response from the recipient of her doting attentions. With a spoonful of Midazolam to help the medicine go down, she will have ensured their quiescent and uncomplaining compliance; their silence in this world ensured, they will have passed on into that eternal silence in the next.

The PROMs are reserved for those that are left behind for "how people die remains in the memory of those who live on" and it is they who will tick all the right boxes. So, what happened...?

In the words of Dr. John Hughes, the LCP became a toxic brand.

Margaret has also been brushing shoulders with the acolytes and noteworthies in the Wee BeeLong EoLC Universe, joining the Advisory Group to peer review Specialist Palliative Care Services.

This is a letter to colleagues on a NHS National Peer Review Programme letterhead from fellow Advisory Group member, Ruth Bridgeman, in her role as Programme Director NCPR.

Appendix 1 Membership of the Advisory Group

Bee Wee  Palliative Medicine Consultant and National Clinical Director for End of Life Care, NHS England 

Dee Traue  Palliative Medicine Consultant and Care Support and Strategy Team, Help the Hospices 

Heather Richardson National Clinical Lead Help the Hospices Jonathan Ellis  Director of Public Policy and Parliamentary Affairs Help the Hospices 

Claire Henry  Head of Programmes, Domain 2 Long Term Conditions and End of Life Care, NHS Improving Quality 

David Brooks  PalliativeMedicineConsultant and President of Association for Palliative Medicine of Great Britain and Ireland 

Teresa Tate  Medical Adviser of Marie Curie Cancer Care 

Jane Bywater  Palliative Care Consultant, Trustee of and representing the National Council for Palliative Care 

Margaret Kendall  Consultant Nurse Rep, National Nurse Consultant Group (Palliative Care) 

Ruth Bridgeman  National Director NCPR Julia Hill Deputy  National Director NCPR 

Ian Manifold  Clinical Lead NCPR

Bridgeman wrote a similar letter in 2012 on a NHS National Cancer Action Team letterhead. This listed the peer review group, not in an appendix, but in prominence and refers to the membership as "representatives of key organisations". Wow! Bet that went to your head, Margaret.

Margaret is listed in the 2012 letter as -

Margaret Kendall  Consultant Nurse Rep, Nurse Consultants in Palliative Care reference group

They all love their titles; it affords them an air of authority that they are someone who should be listened to and must be dealt with. Wee BeeLong has dropped her Presidential trappings to adopt the more mundane but still grand 'National Clinical Director'.

As for Margaret...

It has been established that the six groups named here –

1.     The National Nurse Consultant Group (Palliative Care) 

2.     The Consultant Nurses in Palliative Care Reference Group 

3.     The National Palliative Care Nurse Consultant Group

4.     The National Group of Palliative Care Nurse Consultants

5.     The National Group of Palliative Care Nurse Consultant

6.     The nurse consultant group

are one and the same group which is, according to Bridgeman, a "key organisation". A final decision on the official name for this "key organisation" should have been taken last March. This is Margaret -

The group is made up of 26 consultant nurse in palliative care who are employed either by acute trusts, primary care trusts or independent hospices.

We are all highly experienced nurses who have worked In the field of palliative care for many years prior to assuming these roles.

The name of the group as you can tell has been under many guises, but the final agreement on a definitive name will be debated at our next meeting March.

As we are all clinical nurses there is no board formulation. We have a chair and a secretary for administrative purposes only. We meet to debate and support palliative care initiatives and to initiate best practice models where none may currently exist.

Neither the DoH or NHS commission work from the group but we work alongside the National End of life Care team to provide the clinical voice for new developments and reviews. Occasionally the DoH ask for a representative from the group to sit on working parties or review panels to provide the clinical nursing input.

We receive no funding whatsoever either for work that we do or for our meetings.

Both letters concern the self-assessments undertaken by specialist palliative care services in 2012/13. The report can be found on the resources page on the CQuINS website under specialist palliative care -

CQuINS!

But...

As previously agreed there is no quality judgement applied to the findings and all respondents are anonymous with no identification of individual Networks or providers.

The report and recommendations also take account of -

The shift of Specialist Palliative Care from cancer to a more generic framework

to include everyone and rope in that statistical one in one hundred of us who die each year. Whether we need or want this care or not, they are determined to give it to us.

The appointment of the National Director for End of Life Care as a point of reference for any future development of national service specifications, operational frameworks, standards or guidelines.

to acknowledge the Supreme Leader, Wee BeeLong.

Notably,

For the individual service SPC MDT the view was expressed that the presence of two consultants was unnecessary at each MDT. However it must be stressed that the value of peer support, the avoidance of isolation and the prevention of potential maverick practitioners were all seen as important factors by an overwhelming majority.

A total of 29 visits were made across 22 Networks in England with a further five meetings with key individuals. The source of the findings is taken from the self-assessment reports, the accompanying narrative and the content of discussion and feedback from the 29 site visits. These are people doing self-audits being peer reviewed by "representatives of key organisations" all of whom were adamant that the LCP was "Best Practice". Most still are!

I ask you: Are these really people to be trusted?

Essential Catchup reading -

Liverpool Care Pathway - Of Deception And Infamy 

Liverpool Care Pathway - Of Deception And Infamy (Part II) 

Liverpool Care Pathway - Curiouser And Curiouser And Curiouser

I ask you: Are these really people to be trusted?