Wednesday, 25 November 2015

Liverpool Care Pathway - New Priorities For Care

When the cuts can't be found, then the scythe must be brought to the field.

In the press release published on dot Gov last year, they discussed what the “new Priorities for Care” mean –

  • The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
  • Sensitive communication takes place between staff and the person who is dying and those important to them.
  • The dying person, and those identified as important to them, are involved in decisions about treatment and care.
  • The people important to the dying person are listened to and their needs are respected.
  • Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised.
These new “Priorities for Care” are not fundamentally different from the 'Pathways' they replace except, to use the current in-vogue phrase, to portray them as ‘person centred’. It is ‘buzz words’ and spin. They are still 'diagnosing' dying.

The patient is determined - 'diagnosed' - to be dying and is then classified and referred to as 'the dying person'. The mindset is set and becomes set in stone.

The Wee Belong deliberations proceeded and the Leadership Alliance produced a Draft document published on 29 July...
Liverpool Care Pathway - Not By A Long Shot
The Final document is due out in December.

The focus of medicine and those who practice it has been subtly subverted. After 2000 years, the Hippocratic Oath is being denied respect and cast aside.

The focus of the healer is no longer to heal the sick but to first determine whether they should be healed by classifying them as part of a group.

The function of the healer was always to plunge into the deep to attempt a rescue. The focus was always to try, however futile the circumstance.

It is a dangerous perspective which classifies the patient to determine not treatment but non-treatment.

It is the arrogance of the arrogant.

Lacking in all humility are they who propose that treatment is determined not by the nature of the ailment but by a determination that their patient is dying. To make such an assumption already predetermines the outcome.

Dying is a positive life choice. Let's talk about it...

Whether on ‘Pathway’ or ‘Priority for Care’, basing treatment decisions upon prognosis is unreliable at best and perilous indeed.

To ask the Surprise Question (GSF/Barton Method) and ‘recognise’ that someone is in their ‘last year of life’ already loads the dice and tips the scales in decisions for treatment/non-treatment further down the line.

Discussions on ACDs will proceed, focussed on and directed by an assumption reached by an arrogance of confidence. The EPaaCCs will record this information.

Specialists may know and recognise their limitations in palliative care.

Specialists may not know but prognosis is never easy to establish.

It is harder to determine among non-cancer people who may be dying than it is among those with cancer.

The GSF has granted a false self-confidence among non-specialists who are more confident than they should be in their ability to diagnose dying. That is cause for concern.

Comments on training:
It gave us the confidence to know what we were doing was good. WE are delivering good EOLC. It has empowered staff, it is easier to appraise them and it has boosted their confidence. It has lowered hospital admission rates because staff ask questions now and see what they can do before sending someone to hospital.
See -
Liverpool Care Pathway - Nottinghamshire Going For Gold
and the role of the Facilitator:
Rebecca Proctor, Macmillan End of Life Care Facilitator at Leicester’s Hospitals added: “I have discovered that empowering staff to recognise that patients might deteriorate and die soon is key and the training we are providing is helping ensure that these staff have the skills and confidence to provide sensitive, appropriate care in these situations.”
See -
Liverpool Care Pathway - Of CQuINs, Tipping Points And QUELCAs
The role of the EoLC Facilitator has taken hold...
The clinical facilitator will use their experience and expertise to influence and change practice in wards to improve end of life care, staff confidence to identify, assess, manage and implement best practice for patients whose recovery is uncertain. This will include developing and running education and training programmes for all staff,
See -
That initial decision taken, one decision follows upon another like dominoes toppling one upon another. One decision will set others in motion, tainting them with their colour and flavour.
Our experience at the Gold Standards Framework (GSF) Centre is that still too often, GPs are only identifying patients in the final days, perhaps weeks of life, and too few non-cancer or care home patients are included. Key to this is the GSF basic three steps:
  • Identify patients likely to be in the final year, months, weeks or days of life
  • Assess their wishes and needs
  • Plan care, enabling them to live and die where they choose, and averting unwanted crises
Some GP practices, such as those with GSF accreditation, are identifying patients earlier. Many are reaching their 1% estimate of population deaths with the key ratio – the number of patients on their QOF palliative care/GSF register over the number of patients in their population – and most of these patients are being offered advance care planning. 
They demonstrate what is possible to achieve and how this links up with the care of frail elderly patients and admission avoidance. 
The CQC will be asking practices about this earlier identification 
GP Online
This is still a process, a protocol, and a self-fulfilling prophecy because of downsized care responses and downsized care expectations.

Whether GSF or SPICT...

Yes, the SPICT has taken root south of the border, down Coventry and Warwickshire way, with CASTLE (Care And Support Towards Life's End) –

The Coventry and Warwickshire SPICT is the recommended tool to support local health and social care professionals to identify individuals who would benefit from a supportive and palliative approach to their care. Coventry and Warwickshire health and social care professionals may download this tool to use in their place of work.

Locally a unified policy and process for advance care planning has been developed through a collaborative project involving primary and secondary care, social care, the voluntary sector and commissioning supported by a coordinated approach to education and training across all health and social care settings. This local unified advance care planning process utilises the Coventry and Warwickshire SPICT to identify appropriate individuals for the local process of advance care planning.
These are non-specialist professionals across the primary and secondary care social care, and voluntary sector 'diagnosing' dying.

Further reading -
Liverpool Care Pathway - The Outsiders And The Also-rans
Liverpool Care Pathway - The Mob Are Sending In The Cleaners
And -
Liverpool Care Pathway - The Bee Wee Tool
CASTLE gives good recommendation to 'Greensleeves' which has been mentioned in these pages previously -
Liverpool Care Pathway - So, Who's Sweeping Up In The Sweepstakes?
The "Greensleeves" has been developed by the Coventry and Warwickshire Advance Care Planning Steering Group and the Coventry and Warwickshire Unified Adult DNACPR Policy Working Group to facilitate the local implementation of the unified policies for ACP and DNACPR in Coventry and Warwickshire.
Greensleaves, Yellow Folders and Hot-Pink Papers -
Liverpool Care Pathway - Making The MOLST Of Your POLST
It’s all about standing out in the crowd. You’ve been collared and tagged for EoLC.

It's all about dealing with that 'tsunami of need'.

Juggling the figures...

Communitarian prioritisation...

And managing the spending black hole.

Additional reading -
Liverpool Care Pathway - The King Lives!
Liverpool Care Pathway - Changing Minds
Liverpool Care Pathway - Do Specialists Think...?
Liverpool Care Pathway - The Dangers Of Arrogance And The Arrogance Of the Arrogant
Liverpool Care Pathway - The Three Options: A Post-modern Fairytale

Friday, 20 November 2015

Liverpool Care Pathway - No Justice For May?

Still back-peddling on the spin bikes...

In a press release published on dot Gov last year, they said -

When the Review was published last year, the Minister for Care and Support announced that people who have a complaint – even where a complaint had already been pursued – about the care given to a dying patient on the Liverpool Care Pathway should have access to an independent assessment of their case should they want it. That message is reinforced today.

In just a year, a lot can change...

Now they say –
Thank you for your further correspondence of 12 October about the Liverpool Care Pathway. 1 have been asked to reply.

I note your continuing concerns and I appreciate that you wish to arrange an independent assessment of your case. However, as Ms           explained in her reply of 9 October, under arrangements made with the Association of Palliative Medicine (APM), an independent assessment is considered as part of the NHS complaints procedure. You may therefore wish to raise your complaint again with the relevant NHS organisation in order for it to be considered by the APM.

I am sorry 1 cannot be more directly helpful.
So, what does anything that any Minister say really count for? What is it good for? Absolutely nothing...

The ‘NHS organisation’ merely reaffirmed their findings.

The MP was rebuffed in like fashion. He has challenged this...

They have responded by consulting their 'legal advisers'.

For ‘legal advisers’, read Solicitors, read NHS Litigation Authority.

This is Legal Business
DAC Beachcroft, Kennedys, Hill Dickinson, Browne Jacobson and Weightmans are among 14 firms to have won places on the NHS Litigation Authority's (NHSLA) expanded services legal panel, with a total legal spend of around £400m over four years.
That’s £400m of taxpayer’s money – the people’s money - set aside to fight the people.

High time the Barons once more took all the King’s Ministers and all the King's men to task to reassert their Great Charter!

Justice is sought and Justice is deserved
But Justice is bought and justice is not served.

Those solicitors who speak honestly will say that May's life was worthless. To pursue a case for damages, the best you may hope for is compensation in recompense for funeral expenses.

To pursue a case for justice, you will be up against a medical establishment able to call on the full resources of the NHSLA to fund their defense and to summon all and sundry medical witnesses to speak in their cause.

But this is not about compensation; this is about bringing people to account.

Neuberger is reported to have said:
Our review exposed some distressing instances of lack of high quality care and we are indebted to those members of the public, as well as health and care staff, who told us about their experiences of the Liverpool Care Pathway.
dot Gov
There was a lack of care full stop and those members of the public to which she refers had their evidence dismissed as anecdote...
Liverpool Care Pathway – All Waffle And Fudge
What awful, awful people.

Baroness Knight of Collingtree addressed Earl Howe:
Will my noble friend assure us that there will be an inquiry, which has been promised and announced in the press, and that it will be truly independent and not carried out by those who have vested interests? Nothing else will do.
And there was not -
Liverpool Care Pathway - The LCP Review: All Sewn Up!
I have seen wild creatures of the field act nobly to their kind.

True nobility is not bestowed by grant of title but by deed: the most lowly may truly be the gentleman; the most lauded by grant of title truly be the scoundrel.

Most significantly, in that press release published on dot Gov last year, they were still 'diagnosing' dying. It really was all just waffle and fudge.
Doctors will be legally obliged to seek patients' consent before placing them on end-of-life pathway under new law
Legal challenge: Patients not consulted on end-of-life care will be able to challenge their treatment in the courts under the new powers introduced in the Health and Social Care Act.
Mail Online
Not if the patient is already dead...

Further reading -
Liverpool Care Pathway - Retracting Their Footsteps
Liverpool Care Pathway - Murder On The NHS Express
Pertinent reading -
Liverpool Care Pathway - A True Story

Liverpool Care Pathway - A True Story Supplemental

Liverpool Care Pathway - Responses Will Be Answered
Liverpool Care Pathway - A True Story: The Next Generation

Liverpool Care Pathway - Jane's Story

Saturday, 14 November 2015

Liverpool Care Pathway - When Creep Comes To Slide

When favour grants and interest persuades, agreement is presumed.

Thus is the very nature of data that it may collect and be collected and accumulate; be stored, archived and gather dust in cupboard and in vault.

Data made a quantum leap as the digital revolution took hold. Data became digital data. Digital data may be stored but becomes readily and immediately searchable, available and accessible.

It has been a step upon step evolutionary process, from GPRD (General Practice Research Datalink) which became CPRD (Clinical Practice Research Datalink) to, a profoundly revolutionary 'Great Leap Forward'.

The Handling of NHS patient data Inquiry reported -

Professor Mathers: itself provides a fantastic opportunity for research. That is one reason why we think the benefits outweigh the risks, provided they are properly managed, for improving patient care. The linking of the datasets between the hospital episodes and care within the practice is where the real power lies in the programme.

Valerie Vaz: My concern is exactly what you have just mentioned: it saves clinical trials. I just wonder whether we are in the process of getting a massive amount of information about the population to save drug companies from doing their clinical trials and work. Some population studies have been going on, have they not? My question is: if someone has an idea for a piece of research, what is wrong with identifying, via GPs or different areas, which they must have done before, those patients and asking their permission? You will find that patients probably would like to help further research. It seems to me you have a massive amount of information about people, which you really do not need to have, that means people can dip in and dip out. I am hoping you will tell me that there is an opportunity for patients to know what information about them has been passed on.

Nicola Perrin: I think there are two slightly different issues within that. You can ask very different questions if you are looking at real-world effects in the population. Of course, there are examples where you can do it on a small scale and ask every individual patient, but you will not be eliminating clinical trials. This is not about novel drugs before they have been approved; it is looking at the effects of drugs that are already being prescribed and picking up side effects which would not otherwise be seen if you were looking at just a small population. It makes it that much easier. Because one can look at large numbers, the costs and resource implications of asking everybody separately to consent would be huge, and would reduce the amount of research that could be done. You also end up with that sort of opt‑in process. You will often have a skewed dataset which can lead to an unhelpful and potentially dangerous bias. You will have some groups that are much more reluctant to give consent and they are missing from the dataset. Therefore, population-level data are of the most value to get the best possible answers from the research. Inquiry
They want your data for Big Data. Your data online is not a facility of convenience for you to access your records, but their Data for them to use for research.

The "costs and resource implications of asking everybody separately to consent would be huge" and so consent is assumed in an opt out process.

This is a "fantastic opportunity".

This is not a land grab; this is a data grab.

The data grab is part of Everyone Counts, a programme to extend the availability of patient data across the Health Service.

Valerie Vaz is concerned that Big Data "saves clinical trials" and is a cost cutting exercise to "save drug companies from doing their clinical trials and work"

But according to the NHS England Business Plan for 2013/14 – 2015/16...

A 'teaching hospital' is a hospital affiliated to a university. And lo, they are all become 'associated university hospitals'. The business plan is being rolled out.

This is Big Government that presumes consent and enacts policies of negative rights.

Big Data can target trials.

NHS patients are subject fodder for research.

They can ‘dip in and dip out’.

And once it’s ‘okay’ it’s okay; the spread is incremental and, notch and by notch, they raise their banner high.

Slip comes to slide and creep comes to spread and necessity is the justification of reason.

That is plain and simple, fundamentalist Communitarian logic. Just ask Sunstein.

Data is used. It is justified; it is for a greater good.

Data has been abused...

From the GP Online -
Pharmacy2U, which holds the largest NHS pharmacy contract in England, operates through the NHS electronic prescription service (EPS). The company receives digitally signed prescription information requested by patients from GPs via the EPS. The firm says it has been instrumental in developing the EPS, working with the NHS since 2001.
 The name and address details sold were supplied by customers themselves when they registered to use the pharmacy's services online, the company said.
 The ICO ruling found that names and addresses sold included NHS patients using the electronic prescription service as well as Pharmacy2U's online patients and retail customers.
Put simply, Pharmacy2U is a respected and reputable company. EMIS Group, the parent company is a leading provider of clinical software systems, a player in the development of the EPS. Data will be used if it can be shown to be justified. After all...

Data is Power, Mr. Bond...
Back in February David Davis, the libertarian Tory MP, challenged health minister Dan Poulter. 
He confirmed that police pursuing serious crime will have “backdoor” access - which was Mr Snowden’s complaint about spy agency dealings with Google - to the NHS’s new arm’s length database, even the records of patients who have opted out. Previously they would have had to trace a suspect’s GP.
Necessity is the justification of reason.

Ask them their three main priorities, Number Six, and they will tell you: information, information, information.

ALECs (Arms Length External Companies) have been discussed in these pages. For instance –
Liverpool Care Pathway - When Justice Must Be Bought And Those Who Seek It Punished
Here's a tale of another bunch of smart alecs...

From the BMJ (British Medical Journal) -

An investigation into England’s clinical commissioning groups shows that many are commissioning from organisations in which board members are involved, Gareth Iacobucci reports.

Clinical commissioning groups (CCGs) in England have awarded hundreds of contracts worth at least £2.4bn (€3.4bn; $3.7bn) to organisations in which their board members have a financial interest, a joint investigation by The BMJ and The Times has found.
This new analysis shows the extent to which CCG boards have become conflicted under the health reforms introduced in 2012, which handed general practitioners control of around two thirds of the NHS’s total budget.

Well, well, well...
Mail Online
Clinical Commissioning Groups (CCGs), which have responsibility for spending 60 per cent of the NHS budget, have raised concerns because doctors can effectively pay themselves for clinical services.
There were a total of 437 contracts awarded by preference...

Lines become blurred and demarcation becomes ill-defined. Public funding is become public sleaze and Cronyism. CCGs treat their income as their own when it is not: monies are held in trust.

Local Authorities are now responsible for public health and CCGs work closely with them through Health and Wellbeing Boards to achieve the “best possible outcome for the local community, by developing a joint needs assessment and strategy for improving public health” (NHS Clinical Commissioners).

LATCs (Local Authority Trading Companies) have also taken off. Smart Alecs are setting up LATCs up and down the country.

This is 'partnership working'. Slip is come to slide and creep is come to spread and necessity is the justification of reason.

Where will all this lead? Are these the makings of the Corporate State...?

It is all for our benefit, citizen.

Are we but not one of many numbers and is not Big Government the Benefactor?

What then may we fear? Will you not trust God with your life; but will you trust your kind with your Data...?

Further reading -
Liverpool Care Pathway - Data Is Power

Liverpool Care Pathway - Threshing The Data

Liverpool Care Pathway - Fracking The Data

Liverpool Care Pathway - Of CQuINs, Tipping Points And QUELCAs

Liverpool Care Pathway - Still Playing Games Of Consequences

Liverpool Care Pathway - Trials And Rumours Of Trials

Liverpool Care Pathway - A Data Bonanza

Liverpool Care Pathway - Still Playing Games Of Consequences

Liverpool Care Pathway - Be Not Disarmed By The Caring Smile

Liverpool Care Pathway - The Communitarian Nudge

Liverpool Care Pathway - Murder On The NHS Express
Last word...

Back in June, Professor Martin Severs, Professional Lead and Caldicott Guardian, HSCIC wrote a letter to the Editor of the Daily Telegraph complaining of inaccuracies in the paper’s report -
We have been working with medical, legal, policy and technological experts to design a robust system that will implement these objections in a way that will not harm anyone’s direct care. This needs to be done carefully; as a clinician I have taken an oath to do no harm and I am determined to get this right.
No-one will doubt the good Professor’s integrity, but there are more powerful forces at play than he.

The information is out of the vault, they are planning out of the box and the Devil will pave the streets with souls.

Friday, 6 November 2015

Liverpool Care Pathway - By Intrusion And By Stealth

By increment, our freedoms do they steal; by notch and by notch, they raise their banner high.

Just over a year ago, there was a police intrusion at our scheme which caused upset and concern to certain of our clients; dismay and alarm to others...
Liverpool Care Pathway - Data Is Power
Police have powers of entry to search a property without a warrant and this may be authorised by a senior officer. Whether those powers were crossed on this occasion by entering our client's room is a fine line.

By ruse and by subterfuge, the Kings men may make an entry by manipulation of the tools provided to them. The Barons must make good and renew their Great Charter.

Provision of support to our clients may extend to accompanying them in pursuit of claims.

Information is shared between departments at national and local level. The Local Government benefits department at a Council office near you has apparent full access to the DWP system.

Confidentiality was once respected as a matter of duty. It did not require laws to protect this. There were ways to behave and ways not to behave. Information provided was not passed on. It was in confidence.

Since the advent of laws to 'protect' personal information, this has broken down entirely. The Data Protection Act, for instance, acts only as a hurdle the legitimate user must jump, not as a protective device at all.

Recently, a client made a first claim for JSA (Job Seeker's Allowance). That is not such a simple thing these days. You have to prove who you say you are.

Our client took all the documents required of them and went upstairs for the interview. Twenty minutes later the client reappeared in a state of dismay. The interview could not proceed.

The photo ID, a passport, was three years out of date. It was the only photo ID they had. A barrage of 'security questions' had been thrown at them. Not normal things like date of birth but what was the last ESA payment that went into their account and when was it paid. They didn't remember; it isn't the thing you necessarily commit to memory.

They remembered the full amount of the benefit payment and that was the figure they gave. They were told this was wrong. This did cause consternation because the figure was correct. And they were being told it was incorrect.

Do they have a credit card? No, they have no credit card. Utility bills? No, they pay a service charge.

They were asked the name of their GP practice. They gave this. And before that? There was none, not that they knew. The practice had moved. Was this a trick question?

Protest was made on the client's behalf. We could verify who they said they were. No, the client would have to return at two o'clock with further requested documents and information.

The client ascertained that there was a prior GP practice. This was when they were barely old enough to remember anything at all. How would they know? How did the Job Centre know?

We returned, armed with what was required.

We challenged them directly. Do they have access to medical information on line? Only what the client provides. But the client could not and did not provide information which they were not aware of, that they had been too young to remember at the time.

Would we please permit the interview to proceed.

Just answer the question and we will retire. We said we would complain to Caldicott.

They have access only to what the client provides.

What is going on?

Benefit provision is integral in health and social care. It is inefficient not to share information. Information is power. Information is control.

Ask them their three main priorities, Number Six, and they will tell you: information, information, information.

Our part and complicity in this is integral. Once the information bucket is dipped into the temptation is going to be to dip into it some more.

Once permitted and left unchecked, this will slip and slide down a slippery slope, as all things inevitably do, and spread inexorably.
The way we manage and share information about people who are in contact with health and social care services plays a pivotal role in achieving higher quality care and improving outcomes for patients and service users.
The way we manage and share information about people who are in contact with health and social care services plays a pivotal role full stop.
The 10-year National Strategy for Information and Technology in Health and Social Care identifies significant financial benefits, including cost savings, efficiency and productivity improvements, as well as non-financial benefits from investment in appropriate information and technology.
ACDs are 'Good Practice'.

The National End of Life Care Programme (NEoLCP) sees the introduction of Electronic Palliative Care Coordination Systems (EPaCCS) as a key contribution to this wider strategic objective. The sort of benefits envisaged are, for example, demonstrated in a case study of an economy-wide electronic care record where improvements in diagnosis, reductions in unnecessary appointments and tests were demonstrated.
Economic Evaluation of the Electronic Palliative Care Coordination System (EPaCCS) Early Implementer Sites
Is information sharing now dipping into the NHS dot Data bucket?

It is ‘okay to ask’...

The NHS is a data pot.

The potential of the NHS as a research platform is now being exploited and realised.

The National Institute for Health Research (NIHR) was created in April 2006 under the 2005 Government strategy for health researchBest Research for Best Health.

Achieving appropriate levels of participation has always been a significant hurdle to research.

This is Trials Journal 

In the United Kingdom, the overarching vision of the National Institute for Health Research (NIHR) is to see ‘more patients and health professionals participating in health research’

Significant resources continue to be invested into clinical trials and other high quality studies, but recruitment remains a significant challenge. Adoption of innovative methods to develop, test, and implement recruitment interventions are required.

We argue that insufficient focus has been placed on the development and testing of recruitment and retention interventions.
All trials which take place in the UK have to be authorised by the MHRA (Medicines & Healthcare products Regulatory Agency). The MHRA decides if they are scientifically valid and properly designed.

But, now, it's okay to ask.

There are three stages of drug testing in humans. Trials are approved by an ethics committee.

Phase one tests for safety. People, sometimes healthy and sometimes with a medical condition, are given a small dose of the drug, not to test if the drug works, but in order to check for any side effects.

Phase two tests the drug on a small scale.

Phase three involves larger scale studies.

Participants are often randomly allocated to either get the drug or a dummy version. In most cases neither the researchers nor the patients know who has got the real drug so that the results can't be skewed by expectations.

Commercial companies may offer a ‘generous payment for your time and inconvenience’.

The Association of the British Pharmaceutical Industry (ABPI) says people should not be given financial incentives to take part in research but they should be recompensed for the time they are giving up. The standard rate is between £150 and £200 a day.

Patients who agree to join trials are volunteers and may receive money ‘to cover expenses, loss of earnings or their time’. Doctors may be paid to recruit patients into trials.

When receiving payments, it might be handy to know that...
HMRC agrees that the amounts paid to those concerned are unlikely to fall within the definition of “earnings” for PAYE or NI purposes. No employment relationship exists and as such PAYE and NIC would be inappropriate.

Under Section 16, Taxes Management Act 1970, HMRC is entitled to ask for details of payments to non-employees at their discretion; but they would not routinely ask for details for small payments such as these.
There will be no tax or NIC liability arising on the individual if the sums received do no more than reimburse the individual’s reasonable costs of participating in the trial or research, including costs of travel and subsistence.

However should the sums paid exceed those reasonable expenses then the excess may fall to be chargeable to tax as Miscellaneous Income, potentially giving rise to personal tax liabilities of the individuals which should be notified to the Inland Revenue under Self Assessment.

Research may be carried out in the NHS, but some takes place in universities and research institutes, in social care services, or in the private sector.

Research that takes place in the NHS may be paid for by one of a number of different organisations, and often more than one organisation working in partnership - the Triple Alliance or Triple Entente of State, Third and Private Sectors.

They include: the NHS, through the National Institute for Health Research (NIHR); the Medical Research Council (MRC); the Department of Health and other government departments; medical research charities; pharmaceutical and other healthcare companies.

Everywhere, wherever, at every NHS facility, you will now be confronted with the comforting knowledge that it is...

Because their funding is dependent on that...

In future, our funding to providers of NHS services is becoming conditional on meeting benchmarks, including a 70-day benchmark to recruit first patients for trials. This was made a condition of new contracts from Autumn 2011 and performance affects funding from 2014.
NHS providers holding NIHR contracts issued after Autumn 2011 are required to provide, on a quarterly basis, information on recruitment to clinical trials, including commercial contract clinical trials.
Wherever there is a financial motivation can this be said to be either moral or safe?

The Healthcare and Life Sciences section of the Plan for Growth (in March 2011) sought ‘simpler’ regulation of health research at the national level, to remove ‘barriers to enterprise’ and stressed that health research has a key role in the national economy.

The Government combined and streamlined approvals under a health research regulatory agency, the NHS NIHR, working closely with the MHRA to create a unified approval process for clinical trials and promoting ‘proportionate’ standards for compliance and inspection.

Does 'simpler' mean less thorough?

Does 'proportionate' mean less stringent?

It's okay to ask...

Trials are approved by a streamlined ethics committee. Even so, north of the border, up Scotia way, in the circumstance of “Emergency” research...
Subject to the trial having been approved by an ethics committee such "emergency" research can proceed without ethics committee approval and without the consent of any guardian or welfare attorney, or the adult's nearest relative, if :-(i) it has not been practicable to contact any such person before the decision to enter the adult as a subject of the clinical trial is made, and(ii) consent has been obtained from a person, other than a person connected with the conduct of the trial, who is:-(a) the practitioner responsible for the medical treatment provided to the adult, or(b) a person nominated by the relevant health care provider.

- Incapacity (Scotland) Act 2000: Code of Practice
NHS England is enacting a policy of negative rights and 'presumed consent' in their Business Plan -

We will act as a facilitator of research – for example, we are planning to investigate a system of ‘presumed consent’ to take part in research studies for all patients treated in teaching hospitals.
NHS England Business Plan
A 'teaching hospital' is a hospital affiliated to a university. And they are all become 'associated university hospitals'.

Further reading -
Liverpool Care Pathway - A Golden Opportunity
They are 'Health Partners'.

At SHP (Surrey Health Partners) -

SHP complements the University’s ‘One Health’ strategy and is one of several phases of strategic developments between the NHS and academia. The partnership will provide a strong platform for NHS and University to achieve their strategic ambitions of developing Surrey as a major ‘hub’ of excellence for clinical research and education.

Research and trials in SHP are supported by the Surrey Clinical Research Centre (CRC). The Surrey CRC is a MHRA Phase I supplementary accredited experimental medicine facility that is part of the Faculty of Health & Medical Sciences at the University of Surrey. It is adjacent to the Royal Surrey County Hospital and is a specialist clinical pharmacology unit with over 12 years’ experience of undertaking clinical trials in both volunteer and patient populations.

They are all part of NIHR Big Data –

Developments in clinical technology have had a revolutionary impact on healthcare over the last 30 years, and the arrival of the electronic patient records more than 20 years ago has delivered enormous benefits, to patients, clinical practice and research.
Such as EPaCCS...

The health data held in GP surgeries, NHS Trusts as well as by the Health and Social Care Information Centre (HSCIC), Public Health England and the Clinical Practice Research Datalink service, is world class and is recognised internationally as a major research asset for the UK.
They are 'delivering clinical research'.

They are committed to ‘ensuring faster and easier clinical research, increase the number of patients who have the opportunity to participate in research, and enhance the attractiveness of the UK as a host for commercially sponsored research’.

It is 'good practice'.

And down at a local CMHRS (Community Mental Health Recovery Service) near you they’re promoting OK to Ask, inviting you to visit NIHRC on line and to like them on their Facebook page.

It used to be CMHT (Community Mental Health Team), but that's just politics.

And a new breed of health professional has come on board - the Facilitator.

No, these are not the now familiar EoLC Facilitators; these are Research Facilitators. And they know how to 'deliver NIHR portfolio studies to time and target'.

They recruit health professionals, patients and collect actual patient data.

They promote initiatives such as the Research Site Initiative (RSI) scheme to GP practices to take part in primary care research...

Funding is available for your GP Practice to cover research infrastructure costs in addition to the usual SSCs paid to cover all agreed study activity related to specific research projects undertaken by the practice. In return for this additional funding, your practice will need to meet specific research related requirements such as Good Clinical Practice (GCP) Training and RCGP Research Ready accreditation.

There are two levels of RSI to match your practice’s research experience and these are summarised below:

Level 1 (£1000)
Level 2 (£2000)
Medical professionals have received payment and been trained to recruit for the death lists; they are now receiving payment and being trained to recruit for clinical studies.

It is all 'good practice'.

The pool of Data is 'world class' and provides a vast pool of opportunity. All that is necessary is engagement.

How to broach the subject and approach the punter requires coaching and that is part of the Facilitator's role.

A client has recently informed us they will be participating in a trial. They will be paid "ten or fifteen pounds a day".

This is an Orwellian world in which we live. Like Alice, we have, well and truly, stepped blithely Through the Looking Glass.

Is this 'good practice' or malpractice?

'Rights' are not given or granted. They are yours. The Life that is yours was not given or granted; it may only be denied or taken away.

That is the principle and uniqueness of the US Constitution. It is, indeed, a document of negative liberties and positive rights.

We have proceeded to a world of opposites.

We have absorbed the Europa model that Kafka would have so readily recognised. Permission is not sought; it is assumed. Be that Organ Donation, DNR or dot Data.

We challenged them directly. Do they have access to medical information on line? Only what the client provides. But the client could not and did not provide information which they were not aware of, that they had been too young to remember at the time.

Would we please permit the interview to proceed.

Just answer the question and we will retire. We said we would complain to Caldicott.

They have access only to what the client provides.

What is going on?

Our client did not give permission because they did not need to; it was assumed. They did not need to know: it was recorded.

This is Big Data, a pool of opportunity.

Further reading -
Liverpool Care Pathway - Twenty Four
Liverpool Care Pathway - So This Is New Year...
Liverpool Care Pathway - A Cost Efficiency
An Afterword –

Our clients have, and regularly have to endure, 'side effects'. A common one is lumps appearing at the site the depot is given. The medication is suspended in oil to slowly release the drug until the next depot is due. Clients have been told they are 'too skinny'; the oil does not disperse. A previous client's arm was "full of lumps".

Medication commonly has side effects for which 'side-effect' medication may be given which, itself, may be problematical.

There has always been recommendation and facility to report side effects. The BNF (British National Formulary) - the ‘Doctors’ Bible’ - recommended it; the Yellow Card provided means...

There has always been the ‘blame game’ and these have gone unreported, unadmitted and denied.

My dear mum, just months before her life was taken, fell victim to a rare condition. This resulted from a topical application. The condition appeared upon application; the one followed from the other but this was denied. Our own research showed that the condition did result from allergic reaction to medication. It was still denied. It was the ‘blame game’.

Will the 'blame game', which is endemic in the NHS, also 'skew' results...

Things can, and have, gone wrong...

BBC News
Six men remain in intensive care after being taken ill during a clinical drugs trial in north-west London.

The healthy volunteers were testing an anti-inflammatory drug at a research unit based at Northwick Park Hospital when they suffered a reaction.

Relatives are with the patients, who suffered multiple organ failure. Two men are said to be critically ill.