Funding of Keveyis

Mr B Elkington made this Freedom of Information request to NHS England

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

The request was successful.

Dear NHS England,

A NHS England special committee met last week to discuss the funding of Keveyis. I would like to know what was agreed at that meeting

Yours faithfully,

Mr B Elkington

FOI, England (NHS ENGLAND), NHS England

Dear Mr Elkington,

 

Thank you for your communication dated 26 January 2018.

 

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 [1]here.

 

If you have any queries about this request or wish to contact us again,
please email [2][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, [3][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: [4][NHS England request email]

 

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

 

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FOI, England (NHS ENGLAND), NHS England

Dear Mr B Elkington

 

Re:      Freedom of Information request (Our Ref: FOI-055514)

 

Thank you for your Freedom of Information (FOI) request dated 26 January
2018.

 

Your exact request was:-

 

A NHS England special committee met last week to discuss the funding of
Keveyis. I would like to know what was agreed at that meeting

 

 

NHS England does not hold recorded information in relation to this
request.

 

Keveyis (dichlorphenamide) is not currently licensed in the UK and NHS
England are not aware of any meeting that has taken place where this drug
would have been discussed.

 

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: [1][NHS England request email]

 

Please quote the reference number FOI-055514 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: [2][email address]  

Website: [3]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, [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: [NHS England request email]

 

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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 'Funding of Keveyis'.
FOI - 055514 submitted on the 26 January 2018

On the 9 February NHS England wrote to advise " we do not hold recorded information in relation to this request & NHS England are not aware of any meeting that has taken place where the drug Keveyis would have been discussed"

This is not true. The IFR Screening group met on the 18 January and discussed various applications for funding for Keveyis.

I want to know therefore why I am now being told that NHS England are unaware of any discussions regarding Keveyis and want full details as to why Screening Group considered that these applications should not be put to the IFR Panel for consideration.

Yours sincerely

Bryan Elkington

ETAILS ABOUT YOUR COMPLAINT HERE ]

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

Yours faithfully,

Mr B Elkington

FOI, England (NHS ENGLAND), NHS England

Dear Mr Elkington,

 

Thank you for email of 12 February 2018. 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’

 

 

 

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FOI, England (NHS ENGLAND), NHS England

Dear Mr Elkington,

 

Re:      Freedom of Information Internal Review outcome (Our Ref:
FOI-055514 IR)

 

Thank you for your Freedom of Information (FOI) Internal Review request
dated 12 February 2018.

 

Your original FOI request was received by NHS England on 28 January 2018,
and read:-

 

“A NHS England special committee met last week to discuss the funding of
Keveyis. I would like to know what was agreed at that meeting”

 

Your Internal Review request was received by NHS England on 12 February
2018, and read:-

 

“On the 9 February NHS England wrote to advise " we do not hold recorded
information in relation to this request & NHS England are not aware of any
meeting that has taken place where the drug Keveyis would have been
discussed"

 

This is not true.  The IFR Screening group met on the 18 January and
discussed various applications for funding for Keveyis.

 

I want to know therefore why I am now being told that NHS England are
unaware of any discussions regarding Keveyis and want full details as to
why Screening Group considered that these applications should not be put
to the IFR Panel for consideration.”

 

The FOI Management team have reviewed your request and this letter
provides the outcome of this review. It may be helpful if we first explain
that an Internal Review looks at the handling of, and response given to, a
Freedom of Information request which has previously been made. The scope
of an Internal Review is therefore limited to considering whether the
request(s) was appropriately handled and whether the response given was
accurate and appropriate. An Internal Review cannot consider any new
queries not originally included in the relevant FOI request(s); these
should be submitted as new FOI requests via our Contact Centre.

 

It was noted that your original response was issued within the statutory
guidelines of 20 working days.

 

We have also assessed whether you received an appropriate response to your
request and considered the comments you have made in your Internal Review
request.

 

It is the conclusion of this review that NHS England’s original response
was accurate and appropriate.

 

As outlined in our response, there has not been a “special committee”
meeting held by NHS England to discuss the funding of Keveyis. Keveyis
(dichlorphenamide) is not licensed for use in the UK and as such its
use/funding would not be considered/discussed at any NHS England meeting.

 

There was no Individual Funding Request (IFR) Screening Group meeting on
18 January 2018.

 

There was an IFR Screening Group meeting on 26 January 2018. However, we
consider that to release information about the conditions and/or
treatments which were or were not discussed at any such meeting would
result in the breach of patients’ rights under the Data Protection Act.
Section 40(2) provides that personal data about third parties is exempt
information if one of the conditions set out in section 40(3) is
satisfied. Under the FOI Act disclosure of this information would breach
the fair processing principle contained in the Data Protection Act (DPA),
where it would be unfair to that person. It is widely accepted that
information which relates to an individual’s health and/or medical
treatment constitutes sensitive personal information, which should be
handled accordingly and not shared unless absolutely necessary.

 

Section 40(2) is an absolute exemption and therefore not subject to the
public interest test when considering disclosure of information.

 

It may also be helpful if we advise that any people who are party to an
IFR application will receive feedback directly relating to their personal
case.

 

In line with the above, our original response is upheld.

 

We hope that this addresses your concerns and that the additional
information provided to you is helpful. 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: [1][email address]  

Website: [2]www.ico.org.uk

 

Please note there is no charge for making an appeal.

 

Please quote the reference number FOI-055514 IR 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, [3][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: [4][NHS England request email]

 

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

 

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Dear FOI, England (NHS ENGLAND),

Thank you for your reply of the 26 Feb which I believe is mendacious and totally misleading.

Since making the original request i have received a copy of a letter written on the 26 January by the manager of the IFR Team to Dr Matthews at UCLH London advising her the the IFR request for funding for Keveyis was rejected by the IFR Screening Group on the 18 January. The Screening Group decided that the drug was experimental and the request was not exceptional and therefore the request would not be put before the IFR Panel.

I just do not believe that there would have been sufficient time for the decision by the Screening Group to be collated and for Mr Turner to write to Dr Matthews all on the same day.

You say that Keveyis ( dichlorphenamide ) is not licensed for use in the UK and as such its funding would not be considered by NHS England.

I do not believe this to be the case. if that were true, any request for funding would be rejected out of hand and not even put before the Screening Group. If there was no question as you say that funding would be considered the letter for Mr Turner to Dr Matthews would have made that clear. As it is Mr Turner advises that Dr Matthews can put in another request or make an application under the Service Development Policy.

Yours sincerely,

Mr B Elkington

FOI, England (NHS ENGLAND), NHS England

Dear Mr Elkington,

 

Re:      Freedom of Information Internal Review (Our Ref: FOI-055514 IR)

 

Thank you for your email dated 27 February 2018 with regard to the above
referenced case.

 

On further review of our records we can now confirm that the screening
meeting did take place on the 18^th January. We apologise for providing
incorrect information regarding this point. With regards to funding of off
label or unlicensed treatments, for clarification and as outlined in our
previous response, there has not been a “special committee” meeting held
by NHS England to discuss the funding of Keveyis. Keveyis
(dichlorphenamide) is not licensed for use in the UK and as such
its use/funding would not be considered or discussed at any NHS England
meeting unless a formal request has been made by a clinician to consider a
policy proposition.

 

We hope that this additional information is helpful and apologise again
for any inconvenience.

 

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, [1][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: [2][NHS England request email]

 

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

 

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Dear FOI, England (NHS ENGLAND),

Thank you for your reply of the 9 March with respect to FOI 055514 together with the apology.

Would you please be kind enough to advise me as to what the phrase " unless a formal request has been made by a clinician to consider a policy proposition" actually means in practice.

Yours sincerely,

Mr B Elkington

FOI, England (NHS ENGLAND), NHS England

Dear Mr Elkington,

 

Re:      Freedom of Information Internal Review outcome (Our Ref:
FOI-055514 IR)

 

Thank you for your email dated 9 March 2018.

 

You asked:

 

“Would you please be kind enough to advise me as to what the phrase "
unless a formal request has been made by a clinician to consider a policy
proposition" actually means in practice.”

 

The process for developing new clinical policy requires a clinician to
make a formal request to develop a policy by submitting a “preliminary
policy proposition”.

 

This process is set out in the Methods document which is on the NHS
England website at the following web link:

 

·        
[1]https://www.england.nhs.uk/publication/m...

 

The following infographic may also be helpful:

 

·        
[2]https://www.england.nhs.uk/publication/i...

 

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, [3][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: [4][NHS England request email]

 

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

 

show quoted sections