Evidence submitted by Helen Wilkinson
My story begins in August 2004 when I first
became aware of the national database for medical recordsthe
NHS Care Records Service. As an NHS Manager I knew immediately
that I did not wish to be on any such Department of Health/NHS
I naively assumed that one just wrote to the
local Primary Care Trust to opt out of this database. But when
I contacted my local Primary Care Trust they did not know how
I could opt out. My MP Mr Paul Goodman then intervened and obtained
an Adjournment Debate in June 2005 about the issues I had raised.
The Department of Health (DoH) eventually agreed to remove all
my personal and clinical details from all NHS databases, but it
has taken them two years to remove all my details and has left
me without access to any medical care whatsoever.
John Hutton, former Health Minister, was invited
with me onto the Radio 4 Today programme on the 31 March 2005
where he stated, "Mrs Wilkinson does not have to have an
NHS Care Record if she does not want one". Indeed Caroline
Flint, Minister for Health, in my Adjournment Debate stated that
no-one would be denied NHS care if they chose to have some or
all of their medical records removed from these NHS databases.
However, as my case highlights, the reality is somewhat different.
The Department of Health have stated that Section
10 of the Data Protection Act applies to me, whereby "the
holding, storing and processing of my personal and clinical details
is likely to cause [me] substantial and unwarranted distress"
under the Act. They have said that none of my demographic, personal
or clinical details should be on any NHS/DH database. But nothing
whatsoever has been put in place to allow me to access medical
care. And in an email from Linda Percival, Director of Customer
Services at the Department of Health, I was told that if I were
to attend any NHS hospital there is very little I can do to stop
the hospital putting my personal and clinical details on their
own databasewhich will give me an NHS Care Record and result
in my identifiable, demographic, personal and clinical details
being used for Secondary User Services purposes!
I also have direct proof that NHS databases
can be accessed by researchers without patient consent. My name,
address and GP details were given to a research study by the National
Strategic Tracing Service (NSTS) database withoutmy consent and
I was later contacted by researchers, the week before I was due
to undergo major surgery. Given my ongoing concerns, this could
have had very serious consequenceshad I decided not to
go ahead with the surgery.
To ensure that I am not placed on the Personal
Demographics Service (PDS), which would give me an NHS Care Record,
my GP has very kindly de-registered me from the NHSbut
still sees me as a patient free of charge. This is not, however,
the solution for all patients and it is doubtful that many GPs
would agree to offer this. A further downside is. that as soon
as I need hospital treatment, I would again have an NHS Care Record
without my consent and my demographic, clinical and personal details
would be used for Secondary User Services.
At the present time I am left completely without
access to medical care, other than being able to see my GP as
a non-registered patient. Even though the Department of Health
have said that Section 10 of the Data Protection Act applies to
mewhere me being on NHS database is likely to cause me
substantial and unwarranted distressabsolutely nothing
has been put in place to ensure that I can access medical care.
This is contrary to the Health Minister's assurances in both my
MP's Adjournment Debate and on Radio 4's Today programme.
My story can be found here in The Guardian:
The 93C3 Code just is not enough to ensure patient
confidentiality all this achieves is to prevent the patients Summary
Care Record from being shared. However the actual detailed medical
consultation notes and in depth patient identifiable clinical
details will still be stored on the Detailed Care Record and used
by the Secondary Uses Services (SUS) without patient consent.
Information used by the Secondary Uses Service is patient identifiable
as the document I obtained under the freedom of Information Act
states the Department of Health deem it impractical to anonymise
these patient records.
Indeed in the Department of Health Patient Information
Advisory Group minutes of September 2005 (which are attached,
it clearly states that it would be a waste of parliamentary time
to debate the issue. Also is the attachment document which looks
at Long Term Medical Condition programme it again clearly states
that the Department of Health are fully aware that the use of
patients identifiable medical data in this manner is potentially
unlawfully A large number of both NHS and private companies have
access to this highly confidential identifiable patient information
including the Department of Health, Primary Care Trusts, Strategic
Health Authorities, Researchers and even Dr Foster.
In my own personal circumstances the Department
of Health have deemed that Section 10 of the Data Protection Act
applies to me and to on any DH or NHS database would cause me
substantial and unwarranted distress under the Act. Even though
the Department of Health have categorically agreed this is the
case I personally have been left without access to any medical
care. I seriously injured my eye last September 2006 and I enclose
a copy of the email I received from Mrs Linda Percival Director
of Customer Services at the Department of Health which clearly
states that even though legaly under Section 10 of the DPA the
DH and NHS cannot hold, store or process any of my demographic,
personal or clinical details to receive medical care I have no
choice but go back on all the DH and NHS databases.The DH are
trying to cause me immense and immeasurable distress by asking
me prove Section 10 of the DPA applies to me each time I am ill.
This is contrary to the Data Protection Act one should only have
to prove that Section 10 of the DPA applies once only not each
time one needs medical care.
The Department of Health have repeatedly failed
to put anything in place to ensure I can access medical care.
This is contrary to my Adjournment Debate where Caroline Flint
Health Minister clearly states that no patient will be denied
medical care if they choose not to be on any of these NHS/DH databases.
Ifeel so incredibly strongly about these confidentiality issues
that even in a medical emergency I would refuse all medical treatment
if any of demographic, personal or clinical details where placed
on any of these DH/NHS databases.Its worth noting that the DH
deem I would be caused substartial and unwarranted distress under
Section 10 of Data Protection if any of my demographic, personal
or clinical details where placed on any DH or NHS database.
let in view of this nothing has been put in place for me to be
able to access medical care and I am completely reliant on the
goodwill and kindness of both my GP and Hospital Consultant who
see me free of charge. I am completely and totally unable to have
access to NHS services such as blood tests, x-rays, out of hours
care, community services for eg District Nurses, attend any Community
Clinics for eg podiatry, attend any hospital as either an inpatient
or outpatient, access any maternity services or have any NHS prescription-the
list is long way.
This is purely due to these DH and NHS databases
as well as Section 10 of the DPA applying to me.
My personal view is that I do not want nor would
I ever consent to any of my demographic, personal or clinical
details leaving either my GP or Hospital Consultants consulting
room without my explicit consent. I firmly believe that the NHS
Care Records Service and Connecting for Health should be disbanded
and there should be secure local databases, by this I mean hospital
and GP Surgery's should have their own databases that communicate
with one another only with explicit patient consent.
I also believe that medical data used for Secondary
Services Uses (SUS) or for research purposes should either be
truly anonymous or only to used with explicit patient consent.
By profession I am an NHS Manager with over
20 years experience I have worked as a Manager in General Practice,
for a Health Authority and for two London Teaching Hospital Trusts
what has amazed me about this situation is that until I investigated
and researched the whole area of patient confidentiality and the
DH/ NHS databases I ones truly amazed and horrified that all this
highly confidential identifiable patient information was being
used potentially unlawfully withoutpatient consent. In view of
this I set up The Big Opt Out Campaign to inform patients about
both the NHS Care Records and patient confidentiality.
The Big Opt Out Campaign has been a huge success.
The demand from patients is enormous. The Campaign was formally
started on 29 November2006. Over 75,000 people have downloaded
our OptOut Letter. I taking approximately 100 phone calls a day
from patients and dealing with 50 emails a day. I have anecdotal
evidencethat numerous patients are so concerned that they are
de-registering from the NHS so their medical records are destroyed
and so that they do not get put on NHS CRS. I have also had other
patients tell me that they are prepared to lie about their symptoms,
medication they are taking and medical history as they cannot
opt out of the Detailed Care Record or prevent their records being
used by the
Secondary Uses Services. It begs the question what
use is this medical data going to be to the DH and Researchers
if it is inaccurate? Patients are also expressing huge concerns
that unless they opt out of the Summary Care Records local high
street pharmacists will be able to access this clinical information
and their demographic details, including ex-directory phone numbers.
I am seriously worried that there will be an under class of people
left without any access to medical care whatsoever.
With regards my own case I am left in the clinically
highly dangerous position of being unable to access any medical
care due to Section 10 of the DPA applying to me and the DH are
totally refusing to do anything to enable me to access medical
care. Hence the current highly unsatisfactory situation continues
to cause me immense and immeasurable distress.
The Big Opt Out Campaign
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