Liverpool Care Pathway - Of Deception And Infamy

There are famous - and infamous - tales of deception and counter-deception from times of war, of one side attempting to hoodwink and out-best the other to gain some advantage of strategy. One such tale from the Second World War was made into a film called, "The Man Who Never Was".

No war is good, but sometimes it is necessary to fight the good fight and that has to be what the Second World War was about.

No battle is undertaken lightly, but battle we must and stand up and be counted amongst those few who will stand up and be counted and, with righteous anger, declare a wrong to be wrong!

No war is good but that is what we fight, and it is the good fight we fight. And this tale we tell is also of deception and counter-deception. The tale - "The Group That Never Was" (a.k.a. The Once and Future Group).

The tale begins with an email from the nurse consultant group...

            nurse consultant group.‏

Kendall, Margaret (Margaret.Kendall@whh.nhs.uk)

03/01/2013

Good morning, 

Your email has been passed to me from Kate Henry at EOLC team.

I chair the group. How may I help you?

Margaret 

Margaret Kendall

Consultant Nurse In Palliative Care / End of Life Care Lead

Office 10

1st floor Postgraduate Education Centre

Warrington and Halton Hospitals NHS Foundation Trust

Lovely Lane

Warrington 

Cheshire

WA5 1QG

Tele: 01925 275298

Fax: 01925 662347

Bleep 891

................................................................................................

Good Morning.

Thankyou for contacting me regarding my query.

May you assist in the following matter, please?

I am attempting to clarify the actual status of the following named groups, their constitution and membership, in order to validate their existence. They are each named as co-authors or made as reference of at least one publication.

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

Do they exist independently or is one a misnomer for one or more of the aforementioned? If independent organisations, how may they be contacted, please, in order to ascertain their constitution and status?

Many thanks.

................................................................................................

From: Kendall, Margaret [mailto:Margaret.Kendall@whh.nhs.uk] 

Good morning,

I can confirm that the groups mentioned in 1-5 below are the same group of which I am chair. Our terms of reference are as follows:

Our purpose as a group of nurse consultants is to promote palliative care nursing within a multi-professional context

AS NURSES IN PALLIATIVE & END OF LIFE CARE WHAT DO WE DO?

Our terms of reference are as follows:

· To provide a critical body of expert nursing opinion
· To influence nursing practice at local, network & national levels
· To articulate nursing practice to influence policy
· To identify areas of nursing practice in need of further development by research and education
· To contribute a nursing voice to debate affecting delivery of palliative and end of life care
· To provide diverse nursing knowledge and expertise supporting service development

I hope this clarifies.

Margaret

Margaret Kendall

Consultant Nurse In Palliative Care / End of Life Care Lead

................................................................................................

Good evening,

Thankyou for your kind response.

You state that the groups mentioned in 1-5 below are the same group of which you are chair. May I ask what is the formal name of the group, please?

Further to my email, is the group formally structured, please? Is there a board of members and what is its make-up? What formal qualifications do they hold? To whom is membership open and what is the extent of that membership?

On what basis did the DoH and NHS commission your group to write care documents for publication? Does the group receive funding for its work and from whom? Is the group registered as Data Controllers with the Information Commissioner's Office?

Many thanks.

................................................................................................

From: Kendall, Margaret [mailto:Margaret.Kendall@whh.nhs.uk]

can i please ask who you are before I respond further.

Margaret Kendall

................................................................................................

Good evening,

Thankyou for your kind response. I am requesting this information as an interested member of the public...

You state that the groups mentioned in 1-5 are the same group of which you are chair. May I ask what is the formal name of the group, please?

Further to my email, is the group formally structured, please? Is there a board of members and what is its make-up? What formal qualifications do they hold? To whom is membership open and what is the extent of that membership?

On what basis did the DoH and NHS commission your group to write care documents for publication? Does the group receive funding for its work and from whom? Is the group registered as Data Controllers with the Information Commissioner's Office?

Many thanks.

................................................................................................

From: Margaret.Kendall@whh.nhs.uk

Thank you,

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.

Regards,

Margaret

Margaret Kendall

Consultant Nurse In Palliative Care / End of Life Care Lead

It is now 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 chaired by Margaret Kendall. 

It is now established that these six  named groups have not existed officially under any name at all as this matter is still to be decided at their next meeting in March.

It is now established that this group chaired by Margaret Kendall has had many names and yet has had none.

It is now established that this anonymous anomality of non-persona have had authored and co-authored work published, given evidence to a House of Lords Select Committee, submitted expert opinion, and been cited in reference.

According to Dr. Lofthouse:

1. In 2005, a group claimed to represent "all palliative care nurse
consultants in England ".- "The National Group of Palliative Care
Nurse Consultants"-, in their written evidence to the House of
Lords Select Committee on Assisted Dying in 2005 (see:
http://www.publications.parliament.uk/pa...).
2. A statement by another group called the"Consultant Nurses in
Palliative Care Reference Group" in 2012 (signed by an M Kendall
MSc BSc RGN RSCN NDN on behalf of this group on 25/10/12 ) is
currently being displayed on the NHS National End of Life Care
Programme web portal at
<http://www.endoflifecareforadults.nhs.uk...> 

in support of the Liverpool Care Pathway, and what they describe
as 'their colleagues at the Association of Palliative Medicine'.
They do not appear to exist.
3. Yet another group calling themselves the "National Nurse
Consultant Group (Palliative Care)" appear to have actually written
the Guidance on nursing the dying for the DoH/NHS in 2011. (see:
http://www.endoflifecareforadults.nhs.uk...)
, and M. Kendall appears to have been the only named author of this
document. They do not appear to exist either.

There are famous - and infamous - tales of deception and counter-deception from times of war, of one side attempting to hoodwink and out-best the other to gain some advantage of strategy. What deception or counter deception is this...?

This is After Atos -

LIVERPOOL “KILLING” PATHWAY – Nursing and Midwifery 

Council says “Not Our Problem”

BEING former nurse and still registered and having been at the side and with people as they die I felt very strongly, like many, when I found out people were being purposely put on a euthansia programme of withdrawing all food and drink and letting them to die over days in distress and pain with only sedation and upping of medication to make them sedated and make them quiet. I also found out that unqualified and bogus paliative care groups had been set up, it appears in name only – to add weight to the argument and use of these programmes. An important question had been posted on FOI site and I had to ask the NMC to get involved and please challenge and question it, Seeing as nurses are part of this process and our duty and care would be to not be part of killing or withdrawing food and drink to point patient dies.

It is seems, sadly to me, that the NMC does not care, and has given a pass-off, avoided response.

To After Atos

Firstly, I am sorry for the delay in responding to your email to Sara Tollerton, dated 31 December, which has been passed on to me in my role of Head of External Liaison.

The NMC has no role in the Department of Health (DoH) review of the Liverpool Care Pathway. I note the FOI request that has been made, but it is not the NMC’s role to inquire into the review, or the individuals or groups which the DoH has asked to contribute to it.

I am sorry not to have written before now.

Yours sincerely

Peter Lynn

And here is Margaret Kendall in her own write on behalf of The Consultant Nurses in Palliative Care Reference Group - 

Joint statement from the Consultant Nurse in Palliative Care Reference Group

As  consultant nurses in palliative care, we are aware of the  ongoing 
adverse media coverage about the care provided to people as they die.
We are also aware of the distress and fear that negative publicity about 
these events causes. We wish our voices to be heard because we have 
extensive experience of the care of the dying and of using the guidance 
of the Liverpool Care Pathway (LCP) to provide and measure the quality 
of that care.

We deplore poor care for the dying and insist that society does all it can 
to alleviate the physical, emotional and spiritual distress that can occur 
during the days and  hours that precede death. Equally we deplore the 
counter-productive comments made in the media which describe care of 
the dying as killing. Nurses and other health professionals are tending to 
the dying and their families every day and every night of the year. It is 
deeply offensive to public servants who abide by clear codes of conduct
and the law, to describe their dedicated work in this way. Furthermore, 
it significantly increases the distress for future patients and families if 
such suggestions are purported and we have witnessed heightened fears 
since media reports appeared.

Death, like birth, is a natural and individual process. For some people, 
death is quick and painless, for others,  the hours and days which 
precede death can also include suffering for the person, for the families 
and for professionals. Many aspects of that suffering can be anticipated 
and avoided with careful planning, communication and coordination

We are aware of the distress that some families have  reported as a 
result of what appears to be a lack of clear communication in some 
areas over the purpose and process of LCP. As a result, we will continue 
to explore further ways of supporting improved communication skills for 
all relevant staff

The LCP was not introduced to 'Clear the NHS of the old and the infirm', 
as has been cruelly suggested in the Daily Mail. It is a specific document 
developed to guide the assessment, delivery and evaluation of care 
during the last days of life.  It was developed by health workers with 
direct and daily experience of care for the dying. 


The LCP document has been continuously updated as a result of multiple 
national reviews (supported by respected professional bodies). In 
particular, guidance about identification of the dying, communication 
with patients, families/carers and regular review by the multidisciplinary 
healthcare team is enshrined within the latest national version. 

The importance of culture and religion at the end of life, challenges us to 
be flexible with the way we deliver end of life care to everyone. We 
remain committed to the belief that organised and sensitive care in the 
last days of life is a human right. We fully support the significant efforts 
being made nationally to train nurses and doctors to appropriately 
identify the dying, to communicate sensitively and to relieve suffering.;
we call for the ongoing funding for the continuation of rigorous training; 
particularly in the difficult conversations with distressed patients and 
families.

We believe that use of the LCP guidance can be improved by bringing 
the voice of the family clearly and routinely into the planning, delivery 
and evaluation of care and we are developing ways to achieve this. 

Equally  we  fully support the proposal by  the DH  end of life  care 
programme board for workshops and  projects around integrated care 
pathways in end of life care and would wish to be an integral part of this 
work.

Finally to quote from our medical colleagues from the  Association for 
Palliative Medicine  “we  will continue to  deliver, and support the 
delivery of high quality palliative care, including listening and responding 
to concerns and anxieties experienced by our patients and their families 
about many different aspects of their illness and treatment as part of 
our holistic approach to their care”.


M Kendall MSc BSc RGN RSCN NDN on behalf of the Consultant Nurses in 
Palliative Care Reference Group
25/10/12