Number of patients diagnosed with primary periodic paralysis

Department of Health and Social Care did not have the information requested.

Dear Department of Health,

Would you please be able to tell me how many patients in the UK are currently diagnosed with the condition of Primary Hyper/Hypokalaemic Periodic Paralysis

Yours faithfully,

Bryan Elkington

Department of Health, Department of Health and Social Care

1 Attachment

Dear Mr Elkington,

Please find attached the Department of Health's response to your recent
FOI request (our ref: FOI-1105600 ) 

Yours sincerely,

 Edward Franklyn 

Freedom of Information team
Department of Health

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Dear Department of Health,

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

I am writing to request an internal review of Department of Health's handling of my FOI request 'Number of patients diagnosed with primary periodic paralysis'.

On the 10th December the DoH informed in a written reply ref: DE 1101850 that the price of Keveyis had been informed by the fact that the medicine had orphan status for around 50 patients in the UK along with other factors.

How can the DoH possibly make that statetement when it told me in a written answer to FOI 1105600 that the DoH did not hold that information

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

Yours faithfully,

Mr B Elkington

FreedomofInformation, Department of Health and Social Care

Dear Mr Elkington,

You internal review request was previously allocated to a colleague but due to staffing issues has been escalated to me to complete. I will aim to do so within 20 working days.

I apologise for the delay incurred to date in dealing with your request.

Kind regards,
James

James Shewbridge
Freedom of Information Team
Department of Health
39 Victoria St
London SW1H 0EU

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Dear FreedomofInformation,
On the 7 November I asked for information as to how many Patients in the UK were diagnosed with the condition Primary Periodic Paralysis.

The Dept replied that this was not information they held and referred me to NHS Digital. The data sheets on the NHS Digital website only list contacts with GP's, Hospital admissions and Out Patient admissions, therefore this does not give the information required. I also note that the condition Familial Periodic Paralysis ( Code G72.3 ) is not listed anywhere on the data sheets.

I therefore ask again, how did the DoH Pricing Team know that Keveyis had orphan drug status for around 50 patients in the UK.

Yours sincerely,

Mr B Elkington

FreedomofInformation, Department of Health and Social Care

Dear Mr Elkington,

I am currently working on your request and will respond as soon as I have received the relevant information.

Kind regards,
James

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Dear FreedomofInformation,
My question was " How many patients are there in the UK diagnosed with the condition primary periodic paralysis" i.e. how may patients IN TOTAL are there in the UK at the present time.

NHS Digital have given me "The number of diagnoses within England in 2016-2017" which is obviously not the answer to my question.

Does the Dept of Health have the faintest idea as to how many patients there are in the UK at the present moment with primary periodic paralysis ???

Yours sincerely,

Mr B Elkington

FreedomofInformation, Department of Health and Social Care

Dear Mr Elkington,

I apologise for the delay in responding.

My response to your internal review is currently with officials for clearance. Once I have received this, I will forward it to you.

Yours sincerely,
James

James Shewbridge
Freedom of Information Team
Department of Health and Social Care
39 Victoria St
London SW1H 0EU

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FreedomofInformation, Department of Health and Social Care

1 Attachment

Dear Mr Elkington,

Please attached my response to the internal review of FOI 1105600. I apologise for the delay in issuing this response.

Yours sincerely,
James

James Shewbridge
Freedom of Information Team
Department of Health and Social Care
39 Victoria St
London SW1H 0EU

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