Liverpool Care Pathway - Endorsement by a national Nursing Group that does not appear to formally exist

The request was refused by Department of Health.

Dear Department of Health,

26 December 2012

FOI Act Request: Requesting details of those appointed by Mr. Lamb and Mr. Hunt to conduct an 'independent review' of the Liverpool Care Pathway/End of Life Care Pathway.

Could the DoH please clarify the identity and membership of one of the groups responsible for authoring key End of Life Care Pathway documentation. The group claims to represent all of the UK's palliative care nurses and nurse consultants, but I can find no trace of their existence at all.

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.

I have been unable to find any trace on the internet or elsewhere of groups 1), 2) or 3). None are registered UK charities, or ever have been. Clearly, if they are representative bodies of any description, they are controlling personal data about their membership and exchanging information with the DoH/NHS, so should, at the very least, be registered as 'Data Controllers' with the Information Commissioner's Office: the ICO have confirmed none are, or has even applied for such registration since 2005.
M. Kendall was commissioned to write documents forming part of the EoL Care Pathway, which have been endorsed by the DoH/NHS as best practice in EoL Care, yet appears to have spent very little time nursing, having pursued an academic career. She is not medically qualified, holding a doctorate in Nursing Studies, and conducts somewhat eclectic research at Edinburgh College, with publications including poetry writing sessions with the terminally ill [e.g. ' Kendall M, Murray SA. Tales of the unexpected: patients' poetic accounts of the journey to a diagnosis of lung cancer. A prospective serial qualitative interview study. Qual Inq 2005;11:733-51. ' ]
She has previously received funding from the DoH, and is currently supported by [amongst others] 'Cancer Care UK' and somewhat ironically, the Dunhill Trust (founded exclusively from the profits of the tobacco industry).
Whilst the identity of Group 1 (who claim to have represented ALL palliative care nurse consultants in 2005) appears lost forever, the DoH and NHS have current relationships with Groups 2) and 3), as you are using them to inform and write DoH care guidelines.

Under the FOI Act, can you please investigate and inform me:
a) how many members do Group 2 and 3 actually have? What are the names of their board members?
b) where are their headquarters located?
c) what is the qualifications break-down of their membership? (Doctors of Medicine currently on the UK GMC register/Doctors of Medicine from overseas/Doctors of Medicine struck off by the GMC/those holding Academic Doctorates in Nursing Studies/Nurse Consultants in Palliative Care/NMC Members/Friends of the Hospice/Unqualified Lay Members etc
d) How many of the members of Group 2 and Group 3 are also members of (i) The Association for Palliative Medicine and (ii) The National Council for Palliative Care, (iii) Dying Matters?
e) how much funding have the DoH /NHS awarded to Groups 2) and 3) above, and to M. Kendall over the past 12 years?
f) why did the DoH /NHS chose to commission these groups to write care documentation used as part of the EoL Care Pathway.
g) are the DoH or NHS liable to pay the £20,000 fine for their failure to register as Data Controllers with the ICO?

Thank you.

Dr. Lofthouse, A.K.C., Ph.D.

Dr. Lofthouse left an annotation ()

A reference group is a concept referring to a group to which an individual or another group is compared.
Sociologists call any group that individuals use as a standard for evaluating themselves and their own behavior a 'reference group'.

If Group 2 are acting as a 'reference group' for evaluation of the Liverpool Care Pathway (which incorporates documents written by members of Groups 2 and 3), will they not, in effect, be reviewing themselves?

cara morrissey left an annotation ()

There is more corruption in this sector than first thought . We deserve answers people are being murdered under this reform sugar coated the liverpool care pathway . The goverment should find the answer our request for answers now

Department of Health

Thank you for contacting the Department of Health.
This is an acknowledgement - please do not reply to this email.
Where a reply is appropriate, we aim to send one within 18 working days,
or 20 working days if your query is a Freedom of Information request or
complaint.
If you have contacted the Department of Health about a current health or
social care campaign, please visit the [1]Department's website where a
response may have been published.

If your enquiry is about a medical matter, please contact NHS Direct on
0845 4647 or visit [2]NHS Choices, or contact your GP surgery.

For general health information you may also find it helpful to refer to
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Department of Health website’s [4]Frequently Asked Questions.  You can
also view our [5]performance against quarterly service targets.
Please note that the Department of Health does not process complaints
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healthcare professional, an NHS organisation or a social care provider,
please visit the [6]'How to make a complaint' page on the Department's
website.
 
You can find out more about the Department’s commitments from our
[7]Customer Charter and [8]Information Charter.

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Dr Lofthouse left an annotation ()

You have mixed up two FOI Act Requests here...this one asked for the identity of a rather powerful sounding National Nursing Group who are advising the Government on End of Life Care.
The other request asked who the members of the grand-sounding Association of Palliative Medicine were, as they were reviewing the LCP for Lamb.

You've suggested I contact one bogus group to verify the credentials of another! Absurd delaying tactic! What are you trying to hide?

Dr. Lofthouse left an annotation ()

You were asked to formally state the qualifications of the Association of Palliative Medicine in this FOI request (http://www.whatdotheyknow.com/request/qu... ) - so the UK could see how unsuitable they were to review this debacle for the DoH.
You have absurdly suggested I contact one team of reviewers to vouch for the level of qualification of another.
All Government contractor's or sub-contractor's qualifications should be a matter of public record - and you are saying that the DoH don't know - you should have found that out before you appointed them.

Internal review both applications.

Dear Department of Health,

Please deal competently with these FOI Act requests.

You have confused this request with that made in connection a separate organisation, who are also currently reviewing the Liverpool Care Pathway for the DoH, having been appointed by Mr. Lamb in 2012. Both FOI requests are pasted below, along with dates of acknowledgement of reciept by you.

You have suggested I contact one organisation to vouch for the membership of another. If this has been sent in error, please sort this out immediately.

I do not accept that you 'don't know' what the membership breakdown of the Association of Palliative Medicine is - they were appointed by the DoH to review a care pathway...as such you should be in a position to deny that at least 70% are not even UK nationals, let alone medically qualified!

In regards to this request, about specious, non existent nursing groups - they appear to have received funding from the DoH AND written material on a government website; they are therefore DoH sub-contractors, and I am somewhat concerned that you cannot even identify their level of qualification.

Please disambiguate these two requests and reply to each with a statement that you cannot vouch for the qualification levels of DoH/NHS sub-contracting bodies, if this is actually the case.

Yours faithfully,

Dr. Lofthouse

---
FYI:

1.FIRST FOI ACT REQUEST - ACKNOWLEDGED ON 14 DECEMBER 2012:

From: Dr Lofthouse

7 December 2012

Dear Department of Health,

Date: 06/12/2012

Freedom of Information Act Request: Membership of the Association
of Palliative Care Physicians

In the wake of current controversy over the government’s ‘End of
Life Care/Liverpool Care Pathway’, you have ordered several
organisations involved in its design and delivery to review
themselves, and to report back to you on an unspecified date in the
new year. One of these organisations - who have already informed
government policy, is the “Association for Palliative Medicine of
Great Britain and Ireland” [APMGBI]

In several DoH press releases, you have variously described the
APMGBI as ‘representing’ or ‘having a membership of 1,000..’ or
‘..over 1,000..’ palliative care practitioners in the United
Kingdom. This implies that they are highly knowledgeable in this
field, and are best able to provide input to a government review of
the pathway, which has been exported to over 22 countries bearing
both the NHS and DoH logos.

However, according to the registration documents filed at the
Charity Commission, their membership is in no way confined to
registered medical or nursing practitioners –

“The APM exists to promote the advancement and development of
palliative medicine and is recognised as
representing physicians at all grades who work in palliative
medicine and those with an interest in the specialty”.

It is therefore open to almost anyone ‘interested’ in the specialty
– I believe some could obtain full membership with an Aromatherapy
or Homeopathy Diploma. More than half of its members pay a reduced
subscription, indicating they are unqualified students (compare
unaudited accounts at
http://www.charity-commission.gov.uk/Acc...
to membership fees on association's website
http://www.apmonline.org/page.php?pageid... .)

Moreover, it has a worldwide membership, raising the possibility
that some members have qualifications that would be insufficient to
practice in the United Kingdom. There is nothing whatsoever to
preclude its membership including people who had been struck off by
the GMC or NMC for misconduct or bad practice. Many could just be
‘friends of the hospice’, passing necrophiles, or even medical
practitioners responsible for harvesting organs from prisoners
receiving the death penalty in Chinese prisons (where LCP drugs are
used to avoid damaging healthy tissues).

REQUEST: NHS organisations could be sued for Corporate Manslaughter
should training inadequacies have led to avoidable deaths – to
avert even further criticism of a ‘review’ that is supposed to
restore public confidence in the NHS, can you please provide a
detailed membership list for the APMGBI, and/or indicate how many
of its members are currently qualified in Medicine to a standard
that would be deemed fit to practice in the United Kingdom today
[ie excluding those retired, struck off and students].

Jane Barton – who was found guilty of dangerous prescribing leading
to the deaths of at least 12 vulnerable but non-terminally ill
patients in the Gosport War Memorial Hospital over a decade ago,
could be a member, and could thus be informing the DoH on ‘best
practice’ in the care and support of some of our most vulnerable
citizens.
Thank you.

Yours faithfully,

Dr Lofthouse Ph.D., A.K.C.
--------------
2. SECOND FOI ACT REQUEST - ACKNOWLEDGED ON 27TH DECEMBER 2012:

26 December 2012

FOI Act Request: Requesting details of those appointed by Mr. Lamb
and Mr. Hunt to conduct an 'independent review' of the Liverpool
Care Pathway/End of Life Care Pathway.

Could the DoH please clarify the identity and membership of one of
the groups responsible for authoring key End of Life Care Pathway
documentation. The group claims to represent all of the UK's
palliative care nurses and nurse consultants, but I can find no
trace of their existence at all.

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.

I have been unable to find any trace on the internet or elsewhere
of groups 1), 2) or 3). None are registered UK charities, or ever
have been. Clearly, if they are representative bodies of any
description, they are controlling personal data about their
membership and exchanging information with the DoH/NHS, so should,
at the very least, be registered as 'Data Controllers' with the
Information Commissioner's Office: the ICO have confirmed none are,
or has even applied for such registration since 2005.
M. Kendall was commissioned to write documents forming part of the
EoL Care Pathway, which have been endorsed by the DoH/NHS as best
practice in EoL Care, yet appears to have spent very little time
nursing, having pursued an academic career. She is not medically
qualified, holding a doctorate in Nursing Studies, and conducts
somewhat eclectic research at Edinburgh College, with publications
including poetry writing sessions with the terminally ill [e.g. '
Kendall M, Murray SA. Tales of the unexpected: patients' poetic
accounts of the journey to a diagnosis of lung cancer. A
prospective serial qualitative interview study. Qual Inq
2005;11:733-51. ' ]
She has previously received funding from the DoH, and is currently
supported by [amongst others] 'Cancer Care UK' and somewhat
ironically, the Dunhill Trust (founded exclusively from the profits
of the tobacco industry).
Whilst the identity of Group 1 (who claim to have represented ALL
palliative care nurse consultants in 2005) appears lost forever,
the DoH and NHS have current relationships with Groups 2) and 3),
as you are using them to inform and write DoH care guidelines.

Under the FOI Act, can you please investigate and inform me:
a) how many members do Group 2 and 3 actually have? What are the
names of their board members?
b) where are their headquarters located?
c) what is the qualifications break-down of their membership?
(Doctors of Medicine currently on the UK GMC register/Doctors of
Medicine from overseas/Doctors of Medicine struck off by the
GMC/those holding Academic Doctorates in Nursing Studies/Nurse
Consultants in Palliative Care/NMC Members/Friends of the
Hospice/Unqualified Lay Members etc
d) How many of the members of Group 2 and Group 3 are also members
of (i) The Association for Palliative Medicine and (ii) The
National Council for Palliative Care, (iii) Dying Matters?
e) how much funding have the DoH /NHS awarded to Groups 2) and 3)
above, and to M. Kendall over the past 12 years?
f) why did the DoH /NHS chose to commission these groups to write
care documentation used as part of the EoL Care Pathway.
g) are the DoH or NHS liable to pay the £20,000 fine for their
failure to register as Data Controllers with the ICO?

Thank you.

Dr. Lofthouse, A.K.C., Ph.D.

-----

Department of Health

Thank you for contacting the Department of Health.
This is an acknowledgement - please do not reply to this email.
Where a reply is appropriate, we aim to send one within 18 working days,
or 20 working days if your query is a Freedom of Information request or
complaint.
If you have contacted the Department of Health about a current health or
social care campaign, please visit the [1]Department's website where a
response may have been published.

If your enquiry is about a medical matter, please contact NHS Direct on
0845 4647 or visit [2]NHS Choices, or contact your GP surgery.

For general health information you may also find it helpful to refer to
[3]Directgov, the UK Government’s Official information website, or the
Department of Health website’s [4]Frequently Asked Questions.  You can
also view our [5]performance against quarterly service targets.
Please note that the Department of Health does not process complaints
about the NHS or social services. If you wish to make a complaint about a
healthcare professional, an NHS organisation or a social care provider,
please visit the [6]'How to make a complaint' page on the Department's
website.
 
You can find out more about the Department’s commitments from our
[7]Customer Charter and [8]Information Charter.

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6. http://www.dh.gov.uk/health/contact-dh/c...
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margaret Kendall left an annotation ()

I am the margaret Kendall who chairs the consultant nurse group. I am not the M kendall cited by Dr Loftus as an academic.I have never worked in scotland and have been employed within the NHS since 1972.I believe that Dr loftus has googled the name and put two and two together and made 6! I have responded to several anonymous freedom of information requests recently,some forwarded by DoH, in particular to someone who has named himself as an interested menber of the public I suspect this may be Dr Loftus as the questions he poses have been very similarto those requests. I have been open and honest with all enquiries and would expect the same courtesy back from all sources. The consultant nurse group has never been funded or commissioned to do any work for the DoH. We work alongside organisations who approach us, not the other way around, to add comment to or contribute to the debate around palliative and end of life care issues using our clinical knowledge ,skills and expertise in palliative care as we all currently work within that environment. I refute the accusations made by Dr loftus about me personally and the activities of the group and would welcome the opportunity to put the true facts on this site.

Dr Lofthouse left an annotation ()

The DoH were asked to identify and disambiguate an 'M. Kendall' from others with the same apparent name, as no NMC number was given on any of the relevant documentation(there being 4 registrants on the current NMC register with the same forename and spelling).

Dr Lofthouse left an annotation ()

The entire purpose of this site is to place responses to FOI Act requests in the public domain.

I don't make 'anonymous' allegations, Ms. Kendall, mine all have my name on them (with its correct spelling too);I would be most grateful if you could refrain from suggesting I do.

Dr Lofthouse left an annotation ()

I add however, that you have a duty in law to answer anonymous requests, and that all requests must be
treated equally, regardless of who is making the request.

Dr Lofthouse left an annotation ()

You say 'I refute the accusations made by Dr loftus about me personally and the activities of the group '.

I cannot see I have made any 'accusations' about you personally, or about the activities of the group.

Perhaps you could get someone more familiar with the requirements of Data Controllers to deal with legitimate FOI Act requests forwarded to you by the Department of Health in the future?

I find the tone of your response here completely unacceptable.

Dr Lofthouse left an annotation ()

'M. Kendall' states here ' I am the margaret Kendall who chairs the consultant nurse group.'

Which one? Do the DoH normally deal with FOI Act requests in this manner?

1. A statement in support of the LCP was posted on an NHS site dated 25/10/12 <http://www.endoflifecare.nhs.uk/media/19...> by:
M Kendall MSc BSc RGN RSCN NDN on behalf of the Consultant Nurses in Palliative Care Reference Group
2. A consensus statement in support of the LCP was posted on the site of the Marie Cure IPC Liverpool on 12/10/2012 <http://www.liv.ac.uk/media/livacuk/mcpci...> and digitally signed and stamped by
M. Kendall, Consultant Nurse in Palliative Care, National Nurse Consultant Group (Palliative Care)

These are two separate groups, with two entirely different names, neither of which is a registered charity, nor registered as a Data Controller at the ICO. Which one are you, and what is your NMC number?

Dr Lofthouse left an annotation ()

'M. Kendall' states here ' I am the margaret Kendall who chairs the consultant nurse group.'

Which one? Do the DoH normally deal with FOI Act requests in this manner?

1. A statement in support of the LCP was posted on an NHS site dated 25/10/12 <http://www.endoflifecare.nhs.uk/media/19...> by:
M Kendall MSc BSc RGN RSCN NDN on behalf of the Consultant Nurses in Palliative Care Reference Group
2. A consensus statement in support of the LCP was posted on the site of the Marie Cure IPC Liverpool on 12/10/2012 <http://www.liv.ac.uk/media/livacuk/mcpci...> and digitally signed and stamped by
M. Kendall, Consultant Nurse in Palliative Care, National Nurse Consultant Group (Palliative Care)

These are two separate groups, with two entirely different names, neither of which is a registered charity, nor registered as a Data Controller at the ICO. Which one are you, and what NMC number are you claiming should I use in my complaint?

Dr Lofthouse left an annotation ()

In fact, since you could be anyone at all, I'll refer this back to the DoH and ICO.

margaret Kendall left an annotation ()

Apologies for misspelling your name. All FOI requests either sent to me directly as chair of the group or forwarded from the DoH have been fully answered .The consultant nurse group does exist contrary to your belief in the title of this thread and we will consider and debate your comments at our next meeting.I once again reiterate we are a nursing group ,have an "association " with the APM as we work within the same clinical field but have no affiliation to them and have never been commissioned or received payment for any of our work. We are not a charity and have no hierarchical structure such as a board.

Dr Lofthouse left an annotation ()

As
a) this FOI was addressed to the DoH, and
b) anyone can join this site with the name M.Kendall,

I will address this issue formally via the DoH.

Stephanie left an annotation ()

Who's Margaret Kendall and where is her NMC registration Number? Nice to know that the DH have been sending her loads of FOI requests and she has been answering them as an individual. I personally think that Margaret has put two and two together and made six!

margaret Kendall left an annotation ()

the FOI requests the DoH have forwarded me to answer are those regarding the Consultant Nurse group. They cannot answer these FOI requests as they have nothing to do with the group. As chair of the group it has been wholly appropriate that they have forwarded them to me for a response, which I have given openly and honestly to the enquirers.

Dr. Lofthouse left an annotation ()

Ms. Kendall,
Please disambiguate my request from any others you may have been sent from other groups - I have already told you that my request was sent through the DoH - I expect it to be conducted appropriately via them.

This is NOT an appropriate place to engage in a 'slanging match' with other groups who may have made similar requests to you - please stop.

Les Doe left an annotation ()

I am responding to Margaret Kendall's annotation of 5 February 2013 which has been brought to my attention. I believe that I may be the ‘interested member of the public’ to which she refers.

My initial contacts were via Kate Henry and a generic contact email supplied on the website. It was Kate Henry who referred my emails to you, Margaret, as you know.

Email correspondence then duly followed. If you refer to my emails, Margaret, you will see that I contacted you via my personal account and then, when I experienced problems with this (Good old Hotmail), via my work account.

Margaret, you emailed me, and I quote: “can i please ask who you are before I respond further”

I then replied, and I quote: “Thankyou for your kind response. I am requesting this information as an interested member of the public...”

You then kindly responded with the information I summarise here ( and which you can read in full at http://liverpool-care-pathway-a-national... -

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.

margaret Kendall left an annotation ()

the name of the group "National Nurse Consultant Group (palliative Care) has existed from the outset. The "non persona" were invited to give evidence to the House of Lords select commitee and to provide a body of evidence as per our terms of reference.

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

If we do not exist why were we invited to give evidence, provide a body of expert opinion or publish work alongside statutory bodies? why would we have terms of reference?
I indicated the issue of the multi names would be debated at our next meeting not that we did not have a name.
This debate is now getting rather tiresome and I will be making no further comments on the issue until I have consulted with my nurse consultant colleagues and the National End of life care team who do appear to value the work and contribution the group make.

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