Dear NHS England,

I am writing to request information held by the UKHCDO / National Haemophilia Database.

Following an in-depth discussion with the Information Commissioner's Office this morning, I am advised that regardless of any Service Level Agreement (a copy of which I am in possession of) with the UKHCDO (A private body), you are still under obligation to deal with requests for this data. A negative response will be immediately escalated to Internal Review, followed by the ICO where I am now confident a decision will be made in my favour.

The information requested from the NHD is as follows:

• TOTAL NUMBER OF HEPATITIS C INFECTIONS RECORDED IN USERS OF FACTOR VIII & IX CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY.
• TOTAL NUMBER OF HIV INFECTIONS RECORDED IN USERS OF FACTOR VIII & IX CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY .
• TOTAL NUMBER OF DEATHS RECORDED AS A RESULT OF HEPATITIS C AND/OR HEPATITIS C ATTRIBUTABLE CONDITIONS IN USERS OF FACTOR VIII & IX CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY . INCLUDING A FIGURE OF HOW MANY OF THESE PEOPLE WERE ALSO INFECTED WITH HIV.
• TOTAL NUMBER OF DEATHS RECORDED AS A RESULT OF HIV/AIDS AND/OR HIV/AIDS ATTRIBUTABLE CONDITIONS IN USERS OF FACTOR VIII & IX CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY.
• IT WOULD BE APPRECIATED IF THE INFORMATION PROVIDED IS AS COMPLETE AS POSSIBLE AND PROVIDED IN AN “ANNUAL BREAKDOWN” FORMAT FOR THE ENTIRE UK BASED ON THE INFORMATION.

Yours faithfully,

JJ Evans

FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

Dear  JJ Evans ,

Thank you for your communication dated 21 November 2019.

NHS England has assessed your communication as a request under the Freedom
of Information (FOI) Act 2000. As such, please be assured that your
request is being dealt with under the terms of the FOI Act and will be
answered within twenty working days.

For further information regarding the FOI Act, please refer to the
Information Commissioner’s Office (ICO) website. For further information
regarding NHS England and the information it publishes please visit our
website here.

If you have any queries about this request or wish to contact us again,
please email [1][NHS England request email] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [2][NHS England request email].

Yours sincerely, 

Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate
NHS England
PO Box 16738
REDDITCH
B97 9PT
Tel: 0300 311 22 33
Email: [3][NHS England request email]

‘High quality care for all, now and for future generations’

 

show quoted sections

FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

Dear JJ Evans,  

Thank you for your Freedom of Information (FOI) request dated 21 November
2019.

Your exact request was:

“The information requested from the NHD is as follows:

• Total number of hepatitis c infections recorded in users of factor viii
& ix concentrate products of human plasma origin since 1973 to present
day.
• total number of hiv infections recorded in users of factor viii & ix
concentrate products of human plasma origin since 1973 to present day .
• total number of deaths recorded as a result of hepatitis c and/or
hepatitis c attributable conditions in users of factor viii & ix
concentrate products of human plasma origin since 1973 to present day .
Including a figure of how many of these people were also infected with
hiv.
• total number of deaths recorded as a result of hiv/aids and/or hiv/aids
attributable conditions in users of factor viii & ix concentrate products
of human plasma origin since 1973 to present day.
• it would be appreciated if the information provided is as complete as
possible and provided in an “annual breakdown” format for the entire uk
based on the information.”

NHS England does not hold this information.

NHS England is not the data controller or processor in relation to these
data fields and do not have access to them. NHS England only receives
copies of the annual reports which are available online here:
 

* [1]http://www.ukhcdo.org/

We note that the data requested is for the UK. In accordance with Data
Protection and Information Governance legislation, NHS England can only
request access to data relating to people living in England only.

The UK National Haemophilia Database (NHD) is managed by the United
Kingdom Doctors' Haemophilia Organisation (UKHCDO). It holds data on
individuals with haemophilia and other bleeding disorders. Submission of
information to the NHD by all trusts commissioned to deliver Specialist
Services for Haemophilia and Related Blood Disorders has been mandatory
since at least 2013 when NHS England was created and given the statutory
duty to commission prescribed specialised services.  

The NHD was established in 1968, at the request of the Department of
Health. It’s existence, therefore, pre-dates the existence of NHS England,
(which was formed in 2013), by many decades.

Relevant information relating to data prior to 2013 may also be held by
the Department of Health and Social Care (DHSC). As such, you may wish to
contact the DHSC directly. We have included their contact information
below for your reference:

Post:               Ministerial Correspondence and Public Enquiries Unit
Department of Health and Social Care
Richmond House
79 Whitehall
London
SW1A 2NS
           
Online:          
[2]http://www.info.doh.gov.uk/contactus.nsf...

We hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review. This should be requested in
writing within two months of the date of this letter. Your correspondence
should be labelled “Internal Review” and should outline your concerns
and/or the area(s) you would like the review to consider. Internal Review
requests should be sent to:

NHS England
PO Box 16738
REDDITCH
B97 9PT

Email: [3][NHS England request email]

Please quote the reference number FOI-1911-1102461 in any future
communications.

If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:

The Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Telephone: 0303 123 1113
Email: [4][email address]  
Website: [5]www.ico.org.uk

Please note there is no charge for making an appeal.

Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows: PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [6][NHS England request email].

Yours sincerely,

Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate

NHS England
PO Box 16738
REDDITCH
B97 9PT

Tel: 0300 311 22 33
Email: [NHS England request email]

show quoted sections

Dear NHS England,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of NHS England's handling of my FOI request 'UKHCDO Figures'.

The SLA lies with you, not DHSC. ICO advice is that you should provide the information. Please review your response.

A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.whatdotheyknow.com/request/u...

Yours faithfully,

JJ Evans

FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

Dear JJ Evans,

Thank you for email of 4 January 2019. Please see this email as
acknowledgement of your Internal Review request.

We endeavour to respond to Internal Reviews within 20 working days.
However, please be aware that on some occasions this has been extended to
40 working days. An officer will be allocated to handle your Internal
Review and will update you accordingly where necessary.

If you have any queries about this request or wish to contact us again,
please email [1][NHS England request email] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.

To communicate with NHS England regarding Freedom of Information (FOI)
requests, enquiries or complaints we ask these are sent directly to NHS
England’s customer contact centre. This is to ensure all communications
are progressed correctly. Their postal address, telephone number and email
details are as follows:- PO Box 16738, Redditch, B97 9PT; 0300 3 11 22 33,
[2][NHS England request email].

Yours sincerely,

Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate

NHS England
PO Box 16738
REDDITCH
B97 9PT

Tel: 0300 311 22 33
Email: [3][NHS England request email]

‘Health and high quality care for all, now and for future generations’
 

show quoted sections

Dear FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24),

A response to my internal review request is now long overdue. Please respond.

Yours sincerely,

JJ Evans

Dear FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24),

Logged ICO complaint today. (14th Feb)

Yours sincerely,

JJ Evans

FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24), NHS England

Dear JJ Evans,

Thank you for your Freedom of Information (FOI) Internal Review request
dated 4 January 2020

Your exact request was:

‘I am writing to request information held by the UKHCDO / National
Haemophilia Database.

Following an in-depth discussion with the Information Commissioner's
Office this morning, I am advised that regardless of any Service Level
Agreement (a copy of which I am in possession of) with the UKHCDO (A
private body), you are still under obligation to deal with requests for
this data. A negative response will be immediately escalated to Internal
Review, followed by the ICO where I am now confident a decision will be
made in my favour.

The information requested from the NHD is as follows:

• TOTAL NUMBER OF HEPATITIS C INFECTIONS RECORDED IN USERS OF FACTOR VIII
& IX CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT
DAY.
• TOTAL NUMBER OF HIV INFECTIONS RECORDED IN USERS OF FACTOR VIII & IX
CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY .
• TOTAL NUMBER OF DEATHS RECORDED AS A RESULT OF HEPATITIS C AND/OR
HEPATITIS C ATTRIBUTABLE CONDITIONS IN USERS OF FACTOR VIII & IX
CONCENTRATE PRODUCTS OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY .
INCLUDING A FIGURE OF HOW MANY OF THESE PEOPLE WERE ALSO INFECTED WITH
HIV.
• TOTAL NUMBER OF DEATHS RECORDED AS A RESULT OF HIV/AIDS AND/OR HIV/AIDS
ATTRIBUTABLE CONDITIONS IN USERS OF FACTOR VIII & IX CONCENTRATE PRODUCTS
OF HUMAN PLASMA ORIGIN SINCE 1973 TO PRESENT DAY.
• IT WOULD BE APPRECIATED IF THE INFORMATION PROVIDED IS AS COMPLETE AS
POSSIBLE AND PROVIDED IN AN “ANNUAL BREAKDOWN” FORMAT FOR THE ENTIRE UK
BASED ON THE INFORMATION."

Your Internal Review (IR) request was:

"‘I am writing to request an internal review of NHS England's handling of
my FOI request 'UKHCDO Figures'.

The SLA lies with you, not DHSC. ICO advice is that you should provide the
information. Please review your response."

The FOI Management team have reviewed your request and this letter
provides an outcome of this review.

It was noted that your original response was not issued within the
statutory guidelines of 20 working days. Please accept our apologies for
the delay in response.

The FOI Management team have also assessed whether you had received an
appropriate response to your request.

As was indicated in the original response, whilst we recognise that you
are interested in the data requested, unfortunately your request has not
been directed to the appropriate organisation. NHS England does not
collect or hold data in relation to HIV or HCV infections in users of
Factor VIII or IX plasma products. NHS England is not the data controller
or processor in relation to these data fields and does not have access to
them. NHS England may hold an SLA with UKHCDO for the provision of reports
relating to patients living with Haemophilia in England for planning and
commissioning purposes, but it does not have access to data held in the
National Haemophilia Database. The SLA sets out the requirement for the
UKHCDO, which owns the National Haemophilia Database, to issue annual
reports to NHS England, which are available online. Annual reports can be
viewed here:

* [1]http://www.ukhcdo.org/

As such our original response, that information is not held, is upheld.

As was indicated in our response you can contact the Department of Health
and Social Care using the links which were provided. We note, however,
your request for specific contact details for these organisations. These
are available on the websites which were suggested within the response;
however we have also copied them here for your assistance.

Post:               Ministerial Correspondence and Public Enquiries Unit
                        Department of Health and Social Care
                        Richmond House
                        79 Whitehall
                        London
                        SW1A 2NS
           
Online:          
[2]http://www.info.doh.gov.uk/contactus.nsf...

We hope that this satisfactorily addresses and explains our handling and
response to your FOI request. However, if you are not content with the
outcome of the internal review, you have the right to apply directly to
the Information Commissioner for a decision. The Information
Commissioner’s Office (ICO) can be contacted at:

The Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Telephone: 0303 123 1113
Email: [3][email address]  
Website: www.ico.gov.uk

Please note there is no charge for making an appeal.

Please quote the reference number FOI-2001-1122140 in any future
communications.

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [4][NHS England request email] .
   
Yours sincerely,

Freedom of Information
Corporate Communications Team
Transformation and Corporate Operations Directorate

NHS England
PO Box 16738
REDDITCH
B97 9PT

Tel: 0300 311 22 33
Email: [5][NHS England request email]

‘High quality care for all, now and for future generations’

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Dear FOITEAMCRMMAILBOX (NHS ENGLAND & NHS IMPROVEMENT - X24),

ICO Complaint on refusal of data 03/03/20

Yours sincerely,

JJ Evans