Wednesday, 29 January 2014

Liverpool Care Pathway - Long In The Making...

The best-laid plans are not rushed but mature like an ancient cheese...

They surface surreptitiously, with cunning and with stealth, such that it seems they were always there.

A Review did not prevent the Pathway from claiming another victim...

This is BBC News England –

A coroner has said he is concerned about a lack of formal decision making over the ending of a man's care in the days before his death.
Bob Goold was in intensive care following a fall when food and fluids were stopped at Addenbrooke's Hospital.
He died more than a week after being placed on the Liverpool Care Pathway (LCP), in February 2013.
Coroner William Morris said the authorisation to begin the LCP was a "grey area".
Additional reading -
Liverpool Care Pathway - A Blind Faith

Liverpool Care Pathway - An Italian Perspective And Some Chaff For The Finches
The underlying basis of the DoH EoLC Programme has been the diagnosis of a condition of 'dying'. This is the starting point from which all else proceeds. This is a dangerous arrogance to presume and to suppose...
- The Review
This is a dangerous practice in which they persist for this is what application of the One Percent Rule demands and they are hard at this purpose.

Old-age is already an inescapable and terminal condition. The symptoms of this condition - declining mobility, frailty, absent-mindedness - are signs to watch out for in diagnosis and downsizing care.

A more formal approach was first adopted from the early 1990s. The 1990s saw the development of a proto-pathway at Gosport and the Barton method. This latter would be later co-opted by the GSF as the 'Surprise Question'.

The Wessex Guidelines, published by the Wessex Specialist Palliative Care Unit, was co-authored by Barton [World Medical Times] and practiced at the Gosport War Memorial.

The 1990s also saw the development of a tool - a treatment protocol - which was trialled in hospice then in non-hospice setting and later co-opted by the DoH and rolled out across the NHS - the Liverpool Care Pathway. 

The Peer Review Programme 2004-2007 recommends as good practice adoption of the Wessex Guidelines, roll out of the LCP and implementation of GSF.

The Wessex Guidelines adopt non-verbal pain assessment. According to the Gosport Review, this tool was "inappropriately applied" to rehab patients. However, this is practice to note 'non-vocalised' responses and these would be - and are - interpreted to give 'pain relief'.

A formalisation of approach is recommended in this submission to the BMJ –

This is published 25 June 1994...
Clinicians often decide either to withhold or to withdraw lifesaving treatment in elderly patients. Considerable disagreement exists about the circumstances in which such actions can be defended. Debates about the scarcity of resources in the NHS add urgency to the need to resolve this disagreement. Competent elderly patients have a legal and moral right to decide whether to receive life sustaining treatment. Such treatment should not be withheld or withdrawn on the basis of a patient's age alone. Principles for making decisions about life sustaining treatment in incompetent elderly patients can be defended and should exist as written guidelines.

Clinicians working with elderly patients often face difficult decisions about withholding or withdrawing life sustaining treatment. They must balance the sometimes uncertain benefits of active intervention against the potential burdens. Despite the frequency of such dilemmas little clear guidance exists on the moral and legal status of “non-treatment.”

The lack of such guidance is unsatisfactory for several reasons. Firstly, clinicians often disagree about what is morally and legally required of them. Secondly, this disagreement leads to arbitrary differences in the treatment that elderly patients receive; indeed, on occasion, non- treatment on the basis of old age is used unacceptably as a mechanism for rationing scarce resources. Finally, when disagreements arise within clinical teams or with patients or relatives no agreed policy exists to help to resolve these disagreements.
Informed consent and competence are discussed.
When a clinician has decided that an elderly patient is incompetent to reject potentially life saving treatment no legal means exists for a relative to make a decision on the patient's behalf. The courts have confirmed that only doctors have the right to make such clinical decisions. In doing so, they have a professional duty to act in the best interests of the patient.
And the concept of personhood...
What makes people the same persons that they were as children is that they perceive a narrative chain linking their many memories, goals, and beliefs. If, however, a complete break occurs in this chain, where no connections exist, their personal identity is destroyed. Despite the fact that their bodies are the same these patients are not the same persons that they were. Indeed, without the long term and short term memory to develop new connections they are not persons at all. Even when such patients seem to be doing things intentionally they are primarily reacting to external stimuli.
Responses may not be considered responses but local motor reactions.

The decision not to treat, to withhold treatment, is an act. It is a reasonable position to adopt that such an action that causes or brings about death may be considered manslaughter, potentially murder, in law.

Further reading -
Liverpool Care Pathway – A Loss Of Touch With the Final Reality Of Life
In conclusion, what is the one percent...? 
The One Percent is a 2006 documentary about the growing wealth gap between America's wealthy elite compared to the overall citizenry.
and the One Percent Rule?

It is the growing health gap of curative provision between the UK's elder community compared to the overall population.  

Tuesday, 28 January 2014

Liverpool Care Pathway - What's In Your Letterbox?

From letterbox into recycling box, discarded without thought or sense or thought of consequence.

Did you know? Did you notice…? Something as important as this is should not be pushed through the letterbox amongst junk leaflets and advertising to be cast into the recycling box.

This should not be but is this what they intend?

This was the manner in which they first announced this five years ago.

In June 2009, this came through the letterbox with the junk mail -


The full weight and significance of this is now with us. This leaflet has arrived. The SCRs are here...

The front...
 ...and the back of it.

You must act now.

To do nothing is not an option.

Further reading -
Liverpool Care Pathway - It Cast Its Shadow Long

Liverpool Care Pathway - Hard At Their Purpose

The forces are marshaled; the war plans are drawn. The logistics of battle are laid...

Marie Curie has partnered with the RCGP (Royal College of General Practitioners) in a three-year mission to boldly take primary care where care has ne'er trod before.

Selected to direct the field of battle is Macmillan GP, Clinical Lead for EoLC and one percent veteran, Dr. Peter Nightingale.

The Marie Curie Ministry of Information has released documents which lay out the battle strategy clear and plain, including an exit strategy. Lesson to be learned here, Mr. Blair?

This is the Business case example from NHS North Lancashire -

Exit Strategy
If the scheme does not deliver the expected savings the following will be undertaken as an exit strategy.

This scheme is primarily about delivering high quality patient care and patient choice.

The scheme will be closely monitored to ensure that it is targeting the most appropriate patients.
The scheme is not at all about 'care provision'; the scheme is about delivery of expected savings. If these are not delivered, an exit strategy will be pursued.

Only the 'most appropriate patients' will be targeted for EoLC. The scheme will be closely monitored to ensure this.

Hang on, hang on...

Wouldn't you think that only those patients actually at the end of their life for whom there is no curative option should be on EoLC? What is there to monitor? Either they are or they are not. Is this scheme safe? Is this scheme sound?

This is Commissioning end of life care to improve patient outcomes from the RCGP -

If people do not die where they choose, mainly, it is because people do not 'choose' to die. We live by the glass half-full principle and do not relinquish hope so easily.

They are still targeting their one percent. They are targeting them to lower their sights and downsize their options.

So, what would YOOOOOOOU like to get out of today......?

This is serious stuff. This is the DEMOGRAPHIC TIME BOMB. We gotta get these folks put down!

Zeke really hit the coffin nail on the head. These oldies are a real burden. Take a long, hard butchers at this, will you...?

The scheme is absolutely NOT about 'care provision'; the scheme is about delivery of expected savings...

£3.2 grand for every hospital visit. 'Choice' of where you'd like to die has nothing to do with it.

Remember the Boiling Frog...?

This boiling frog of a time bomb has been ticking away since Patrick Gordon Walker's speech all those years ago, in July 1967!
The boiling frog story is a widespread anecdote describing a frog slowly being boiled alive. The premise is that if a frog is placed in boiling water, it will jump out, but if it is placed in cold water that is slowly heated, it will not perceive the danger and will be cooked to death. The story is often used as a metaphor for the inability or unwillingness of people to react to significant changes that occur gradually.- Wickipedia
They waited long enough until they thought it was safe to act. Culture and attitudes have been doctored and groomed. It seems they can now get away with anything, even referring to a dementia sufferer as 'Mickey Mouse'.

They are "NOT doing nothing"...

Gold Standards Framework for Acute Hospitals.
EPaCCS and ePIG (Electronic Palliative Care Co-ordination Systems and Prognostic Indicator Guidance) coming soon.

'Reasons To Be Cheerful (Part 3)'...

...Then permit us to dance in the rain and don’t make judgements on ‘quality of life’.

Don’t put us down when we’re poorly and because the prognosis is not good.
"If I should ever seek death - there are several times when my progressive condition challenges me - I want to guarantee that you are there supporting my continued life and its value. The last thing I want is for you to give up on me, especially when I need you most." 
Lady Jane Campbell
They may not guarantee you LC but, by golly, you WILL have EoLC!

Further reading -
Liverpool Care Pathway - Hot On The Scent For Their One Per Cent!
And just to guarantee that...

Macmillan has teamed up with NHS Greater Glasgow and Clyde (NHSGGC) - Scotland’s largest health board - to roll out a new Macmillan Pharmacy Service. This was developed jointly by NHSGGC and Macmillan with the University of Strathclyde.

This is NHS Greater Glasgow and Clyde -

New pharmacy service is first of a kind in UK 
21/01/2014 15:31
People living in the Glasgow and Clyde area can now benefit from an innovative new service, co-ordinated from their local pharmacy – the first of its kind in the UK.

Following a successful pilot in four local areas, which was funded by Macmillan Cancer Support, the charity has teamed up with Scotland’s largest health board, NHS Greater Glasgow and Clyde (NHSGGC) to roll out the new Macmillan Pharmacy Service.

The new service will work alongside the existing Community Pharmacy Palliative Care Network and other community care staff to provide patients and their carers with improved access to pharmaceutical palliative care in their local communities. This service, co-ordinated through local pharmacies, will help support palliative care patients (those with life-limiting or life-threatening illness) at their most vulnerable time. It will also support patients, should they choose, to die peacefully at home rather than spending their final days in hospital.

Ten new Macmillan pharmacy facilitators will work with existing community pharmacies and other community care staff.
This is Paul Adams, Head of Primary Care and Community Services in North West Glasgow and Chairman of the Macmillan Pharmacy Steering Group:
“This service, which aims to maximise the pharmaceutical care of patients with life-limiting illness, was developed jointly by NHSGGC and Macmillan Cancer Support with assistance from the University of Strathclyde. The service model was based on evidence gained from a three year project which is now being recognised in other parts of the country.”
They have the tools; now, they have the means. As if those 'Just-in-case boxes' weren't enough.

This is yesterday's Daily Mail which ran a spread on the nearly dead...

The Mail asked if we can foresee the death of a loved one.

Yes, we can. Yes, we can!

We have the Gold Standards Framework.

We have the Surprise Question and the Prognostic Indicator Guidance.

Yes, we can foresee the death of a loved one.

Yes, we can. Yes, we can!

And they shall choose the exact moment we die.

This is Dying Matters –
Useful resources
  • The RCGP has developed the Gold Standards Framework Identification Toolkit to help identify terminally ill patients. Not only does it boost the chances of early identification, it can help determine what stage the patient is at through the prognostic indicator guidance (PDF) tool. The tool can be used by individual clinicians or by multi-disciplinary teams to judge whether patients are entering the dying phase of their lives. If this is the case, a discussion should be initiated with patients about their wishes. 
  • The latest comprehensive clinical guidance for identification can be found on the Royal College of General Practitioner's End of Life Care microsite 

Saturday, 25 January 2014

Liverpool Care Pathway - The State Rules, Okay?

There is rhyme and reason to this and you WILL be subjected to EoLC...

Everything held on EPACCS (Electronic Palliative Care Co-ordination Systems) will be made available with the SCR (Summary Care Record). EPACCS are the electronic Death Lists compiled by GPs using the SPICT and the GSF, both of which employ the Surprise Question which is founded on the Barton Method.

All appropriate medical personnel will have access to this. All those ACDs (Advance Care Directives) and their logged DNACPRs will be available to first responder paramedics to view and this will permit YOU, as a ‘dignified person’, to slip away into the great Blue Yonder so THEY may, accordingly, eliminate that huge financial burden that is the focus of NHS Commissioners - along with YOU, the patient.

This will meet the targets set, for instance, by NHS Sussex - the so-called “Audacious Goals” - and, whether “My Wishes” (or Last Wishes!), or the EoLC Locally Enhanced Services Specification (also referred to as the Care LESS!), it's all the same...

This information will all be gathered up by HSCIC (the Health and Social Care Information Centre).

This is Community Care -
Care minister Norman Lamb has given his personal backing to free end-of-life social care, but said he could not yet commit the government to the measure.
Speaking in a debate on the Care Bill last Thursday, Lamb said although he was “not in a position to commit the government” to free end-of-life social care, he said that “I want us to do this” and was “determined that we achieve that objective”. He added that as the responsible minister he had “some degree of influence over decision-making”.
He made the comments in response to an amendment from Conservative MP Sarah Wollaston proposing that terminally-ill people be exempted from social care charges to allow them to die in their preferred place.
This recommendation was made by the government-commissioned Palliative Care Funding Review, which reported in 2012. On the review’s recommendation, the government set up eight pilot projects to test its proposed funding model. The pilots last two years and are ending in March.
Lamb added that NHS England wanted to expand the use of electronic palliative care co-ordination systems (EPACs)—which allow people to register their end of life wishes—to increase national coverage form 30% to 70% by 2015. He said in places where EPACs were established, 80% of people died in the place of their choice. Wollaston said she was “absolutely delighted with the minister’s assurance” on free end-of-life social care and would not press the issue to a vote.
Backing from charity
Macmillan Cancer Support, which has long campaigned for free end-of-life social care, welcomed Lamb’s comments.
“We are very encouraged by Norman Lamb’s comments during last week’s Care Bill debate and his assurance that he’s determined to introduce free social care at the end of life,” said Gus Baldwin, head of public affairs at Macmillan Cancer Support.
“We look forward to discussing this further with the minister with the aim of making quick progress as soon as the Palliative Care Funding Review pilots looking at this issue have ended in March.”
More EPACCS! Lubbly jubbly, and it's all there in the SCR to access. And those already targeted for EoLC and groomed to accept non-treatment will jump at the chance - after all, it's 'free'!

Mr. Lamb says the decision to go for free social care must await the outcome of the pilot schemes. These have been reported upon in these pages.
He said: “Obviously, I want to see the evidence and we have to be aware of the financial consequences, but I am determined that that will happen.”
What does Mr.Lamb mean?

Community Care
Mr. Lamb means that there has to be evidence that care can be successfully downsized and that there are demonstrable savings that will pay for the 'free' social care. It has to be demonstrated and the outcomes have to show that those targeted for the Death Lists can be successfully groomed to accept their lot. This is what it is all about, after all; it is about making those savings to make the NHS "affordable and sustainable, now and for future generations". And as any Councillor will tell you, they are stuck for dosh  at the municipal level, too. It really does have to be cost-effective.

Of course Macmillan support this announcement in the Commons by Mr. Lamb and, along with Sue Ryder, have promoted this measure; it's what they are about. The Death Lists are all about downsizing care expectations. Why, then, does Macmillan purport surprise that care is downsized for elderly patients...?

This is Mail Online -

Macmillan have produced a study which demonstrates that there are barriers to getting treatment
which include age discrimination and inadequate assessment methods
According to eGuidelines -
Up until now GPs have mainly considered cancer patients eligible for DS1500 attendance allowance as the criterion for inclusion on a palliative care register, but the new prognostic indicator guidance paper [GSF] is being used as a way forward for primary and secondary care to identify these patients and initiate supportive care for them. 
A key point is for all hospital and hospice clinicians who recognise that a patient may be in their last year of life to notify the patient's GP and recommend that the patient is added to the palliative care register. 
The recognition of the importance of palliative care is demonstrated by the addition of clinical indicators for palliative care in the revised QOF. This positive step will encourage good proactive palliative care in primary care. Although there are only six points for palliative care in the revised contract (which includes care for all patients estimated to be in the last year of life), when combined with cancer, dementia and other areas, practices can claim up to 52 points if they are using the Gold Standards Framework.
The "1% rule" is then discussed.

Whatever policy, whatever measure, there are always, always consequences. Are they all blind or oblivious to the effects of the measures they have proposed, initiated, promoted and enacted? It is all evidence that EoLC has borne fruit. Strange fruit...

They have called the tune, but can they face the music? Further reading -
Liverpool Care Pathway - There Are Always Consequences
You WILL have EoLC...
Liverpool Care Pathway - Moving In For The Kill

Liverpool Care Pathway - The Devil Is In The Detail

Liverpool Care Pathway - It Cast Its Shadow Long

We were forewarned and heeded not. So bemused and beguiled by its promises were we...?

This is the leaflet on Summary Care Records made available nationwide by the NHS in June 2009 -

In the same arrogant manner in which NHS England now proposes in its Business Plan that you WILL participate in trials unless you have stated otherwise; in the same arrogant manner in which the Welsh Assembly has enacted that (in Wales) you WILL agree to organ donation unless you have stated otherwise, this NHS England leaflet assumes that you WILL agree to have a SCR compiled unless you have stated otherwise.

Can we really expect these people to protect our confidentiality...?

The leaflet claims that -
By law, everyone working for us or on our behalf must respect your confidentiality and keep all information about you secure.
We publish the NHS Care Record Guarantee for England. This says how the NHS Care Records Service will collect, store and allow access to your electronic records, and your options for taking part in the service. If you would like a copy, there is information on how to get one on the next page.
The NHS Care Records Service uses the strongest national and international security measures available for storing and handling your information.
In every place we treat you, there are people responsible for protecting your confidentiallity. These people are often known as 'Caldicott Guardians', and you may contact them for more information and advice.
Get a copy of the leaflets 'Your health information, Confidentiality and the NHS Care records Service' and 'The NHS Care Record Guarantee for England' from our website at www.nhscarerecords.nhs.ukfrom your GP's surgery, or phone 08453 700 750
The leaflet says that you may contact a Caldicott Guardian for information and advice. What is a Caldicott Guardian?
Caldicott Guardians
A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing.
Each NHS organisation is required to have a Caldicott Guardian; this was mandated for the NHS by Health Service Circular: HSC 1999/012. The mandate covers all organisations that have access to patient records, so it includes acute trusts, ambulance trusts, mental health trusts, primary care trusts, strategic health authorities, and special health authorities such as NHS Direct.
Caldicott Guardians were subsequently introduced into social care in 2002, mandated by Local Authority Circular: LAC 2002/2.
The Guardian plays a key role in ensuring that NHS, Councils with Social Services Responsibilities and partner organisations satisfy the highest practical standards for handling patient identifiable information.[NHS Connecting for Health]

The leaflet says that you may contact a Caldicott Guardian for information and advice. Let's do that...

This "non-commercial website represents the personal views of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley". 

This is – is going to begin very soon, and it will affect every man, woman and child in England and their confidential medical records. 
All households in England will shortly receive a junk mail leaflet through their letterbox about this programme, entitled "Better information means better care" . 
This leaflet is not about sharing your medical information with doctors, nurses and other health professionals outside of your GP surgery. 
It's not about the ways in which your GP shares information about you as part of providing essential medical care. 
It's not about ensuring that hospital specialists have the information that they need when you are referred to see them. 
And it's not about submitting information so that GP surgeries and hospitals are paid appropriately for the care that they provide. 
This leaflet is about . 
Not that you'd know, since "" is never mentioned in the leaflet. 
There is no consent with - the decision has been made for you, and your GP surgery, by the HSCIC. 
All you have is the right to object and reverse the decision affecting your medical information. 
You have to act if you wish to preserve your confidentiality. Unless you do, will go ahead and involve your GP records by default. 
This website aims to provide information to everyone about so that you can make an informed decision about opting-out or not. in a nutshell....

  • It is a myth that is completely anonymous - it is not.
  • You cannot object to your NHS information being shared in an anonymised way. That's why there are two opt-outs from - because your data:
  • will not be anonymised or de-identified before it is extracted and uploaded from your GP records
  • will not be anonymised once uploaded and combined into your record
  • can and will be released in a clearly indentifiable (non-anonymised) form to organisations, for both research and non research purposes
  • Sensitive and identifiable information is going be extracted from your GP records and uploaded to Health and Social Care Information Centre (HSCIC) databases
  • Sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases
  • You will not be asked for your explicit permission or consent before these extractions take place
  • The two sets of your information will be combined into one database and subsequently released, in various formats, to organisations within and outside of the NHS, for the purposes of administration, healthcare planning and research
  • The information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care
  • The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but continuously added to
  • You cannot prevent the HSCIC from releasing information uploaded about you in anonymised, aggregated or pseudonymised formats
  • You cannot control when, to whom, for what purposes, and what specific information the HSCIC releases about you from your record
  • Opting out, with either or both of the opt-out options, is the only way to have any control at over how the HSCIC use, or will use, your personal data
  • is voluntary - you are under no obligation (moral or otherwise) to allow your records to be processed in this way, and you have the absolute right to object
  • Your GP surgery cannot stop this extraction - but you, as an individual, can
  • You can prevent the extraction and uploading of clearly identifiable data from your GP records by asking your GP surgery to put a special code in your GP records
  • You can prevent the release of your clearly identifiable data from the HSCIC by asking your GP surgery to put an additional special code in your GP records
  • If you opt-out of (now), you can opt back in at any time in the future
  • is not the same as the Summary Care Record - opting out of one does not mean that you have automatically opted out of the other

"By law," the leaflet boasts! That was 2009; times have moved on, not that their insincerity was ever in doubt...

The Caldicott Review has permitted much which was not, perhaps, intended by Dame Caldicott.

This is the Oxford Times –

Reg Little talks to Dame Fiona Caldicott about her major National Health Service review
To many people it would have seemed a poisoned chalice from the hands of the Secretary of State for Health.
For who, with any knowledge of the NHS, would take on the job of sorting out the mess of patient confidentiality? Trying to find the right balance between protecting patient information, and ensuring it is shared when it really matters — when we are ill and in need of the right treatment — is, to say the least, a tricky business.
Plans to share patient information electronically date back to the Blair administration’s now-axed NHS National Programme for IT, now viewed as one of the most expensive fiascos in NHS history, with the total cost being put in the region of £9.8bn.
But the big issue remains as to whether the NHS is over concerned with protecting confidentiality, leading to patients being put at needless risk through clinicians being denied vital medical information when making their decisions. When the current coalition decided to again revisit the thorny issue of putting the protection of confidential information above our health, there was never much doubt who the Health Secretary was going to call — Dame Fiona Caldicott
This is PULSE –

Private companies and researchers will be able to access data from GP records for £1, under plans revealed by NHS England to radically reduce the cost and boost the availability of information about patients available outside the NHS.
The body’s chief data officer has revealed he wants to reduce the costs for companies to access NHS datasets, from around £20,000 to £30,000 currently, to just £1.
NHS England said the data would be used to identify where improvements and efficiencies could be made in the NHS and that only approved companies would have access to the data.
But the GPC has raised concerns that private companies would have access to NHS patient data ‘on the cheap’.
How cosy...

- DoH

Jeremy Hunt has made reassuring noises that patients would have "any reasonable objection to having identifiable data sent to the HSCIC noted, and a flag put in their records so this was clear". 

Oh really...? And what does Mr. Hunt consider 'reasonable'? This is our information. This is 'data protection' and what we have to say about OUR information should be final.

Mr. Hunt also says that we can object to our data leaving the HSCIC.

Oh really...? And why may we not object to our information being submitted to the HSCIC, full stop? What's going on, Jerry? Or may I call you Jem?

We already have Big Brother's watchful eye on every street. This is Big Brother as Orwell never envisaged him.

This is the HSCIC –

The HSCIC (Health and Social Care Information Centre) collects and stores an incredible and cross-spectrum amount of information at every level. It is an ‘Executive Non-Departmental Public Body’ set up in April last year.

How Uncle Joe and all the other despots of the 20th Century would have loved to have access to a central data resource like this one promises to be. During the brief period of its existence, it has already been busy about its work.

In 1939, Gerry was at our door threatening to force an entry –much as Jerry is today – and National ID cards were issued for every man woman and child in the country. I still have mine. All this information is already at its disposal. This is the 1939 Register Service. 

This is not simply about making sure your medical history is available to assist your doctor in providing better care and treatment. This is much, much more than this.

This is medConfidential –
Sometime in early 2014 you may receive a leaflet via junk mail, entitled ‘Better information means better care‘ (2MB PDF file). It may not be clear from the leaflet that a significant change in what is done with your medical records is about to happen.

Unfortunately, NHS England – the commissioning body that now runs the NHS in England – has decided not to include an opt out form with the leaflet and the information in it says you should “speak to your GP practice” if you want to stop your or your family’s confidential medical information being uploaded and passed on.
Here, you may obtain an Opt Out form you may use. NHS England has failed to provide one.

An Opt Out letter is also provided.

You are not intended to do so. Heretics were once burned at the stake. Who knows, those fine days may yet return to ensure there is no schism. Already, we have Witchfinder Generals...

Further reading -
Liverpool Care Pathway - In Whose Best Interests?