Saturday, 25 January 2014

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?

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