Central Hypoventilation Syndrome – diagnosis and management

The request was successful.

Dear Belfast Health and Social Care Trust (Northern Ireland),

This request refers to diagnosis and management relating to the condition ‘Central Hypoventilation Syndrome (CHS)’ within BHSCT.
Can you please provide the following information?

[1] How many living patients within the Trust are currently diagnosed with CHS?

[2] How many patients within the Trust have been diagnosed with CHS since 1st Jan 2010?

[3] What diagnostic procedures are used to identify CHS?

[4] Is treatment for CHS managed at local (i.e. Trust) or tertiary level?

[5] What medical specialities are involved in the management of patients with CHS?

[6] Does any one medical speciality have a primary lead in the management of patients with CHS?

[7] What are the treatments used within the Trust to manage patients with CHS?

[8] What home support is offered by the Trust to patients with CHS and to their families (including but not limited to 24-hour contact, home oximetry, training, family support)

[9] For patients with CHS who are on ventilation what oxygenation rates should be achieved?

[10] How many patients in the Trust with CHS are currently on ventilation?

[10] How many patients in the Trust with CHS are currently receiving daytime oxygen?

[11] What are the ongoing review steps in place in the Trust for patients with CHS?

Yours faithfully,

Jimmy Hamill

PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

1 Attachment

Hi Jimmy

 

Thank you for your Enquiry.

 

Please find attached acknowledgement.

 

Regards

 

Kate

 

 

Kate Webster

Communications Office

Public Liaison Service

Nore Villa

028 9504 6584

Email: [email address]

 

 

 

 

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PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

3 Attachments

Good afternoon Jimmy,

 

Please see attached a request for further clarification to allow us to
answer your enquiry.

 

I look forward to hearing from you.

 

Kind regards,

Hayley

 

Hayley Kerr

Public Liaison Officer, Public Liaison Service, Belfast Health and Social
Care Trust

Tel: 028 9504 9597

 

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Dear PublicLiaison-SM,

Thanks for your response Hayley.

You have asked the question:
"Can you confirm if your questions relate to the paediatric condition “congenital Central Hypoventilation syndrome”."

The answer is that my questions relate to adults with Central Hypoventilation syndrome. The hypoventilation though can be either congenital or acquired.
I hope this makes sense (I am not a medic).

Yours sincerely,

Jimmy Hamill

PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

2 Attachments

Hi Jimmy,

 

Thank you for providing this clarification which I will share with the
service to assist them in their response.

 

Regards,
Hayley

 

Hayley Kerr

Public Liaison Officer, Public Liaison Service, Belfast Health and Social
Care Trust

Tel: 028 9504 9597

 

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PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

3 Attachments

Good afternoon Mr Hamill,

 

Please find attached response to your Freedom of Information request.

 

Best wishes,
Hayley

 

Hayley Kerr

Public Liaison Officer, Public Liaison Service, Belfast Health and Social
Care Trust

Tel: 028 9504 9597

 

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[3]Twitter.com/BelfastTrust     |     [4]Instagram.com/BelfastTrust    
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Dear PublicLiaison-SM,

Thank you for your reply to my request.
I note that you have stated that no patients have a confirmed primary diagnosis of central hypoventilation syndrome.

Can I ask you to update me on the number of patients in your Trust that have either of the following:
[a] queried CHS
[b] secondary (to other conditions) CHS

I do also think that it might be possible to answer questions 2, 3, 4, 5, 6, 8, 9, 12.
Can I ask that you follow up on that part of the original request?

Thanking you in advance,

Yours sincerely,

Jimmy Hamill

PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

2 Attachments

Dear Mr Hamill,

 

I am writing to acknowledge receipt of your follow-up query in regard to
FOI/24907.  I will look into this and come back to you as soon as
possible.

 

Kind regards,
Hayley

 

Hayley Kerr

Public Liaison Officer, Public Liaison Service, Belfast Health and Social
Care Trust

Tel: 028 9504 9597

 

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PublicLiaison-SM, Belfast Health and Social Care Trust (Northern Ireland)

3 Attachments

Good morning Jimmy,

 

Please find attached response to your Freedom of Information request
follow-up query.

Regards,
Hayley

 

Hayley Kerr

Public Liaison Officer, Public Liaison Service, Belfast Health and Social
Care Trust

Tel: 028 9504 9597

 

[1]Belfasttrust.hscni.net     |     [2]Facebook.com/BelfastTrust     |    
[3]Twitter.com/BelfastTrust     |     [4]Instagram.com/BelfastTrust    
|     [5]YouTube.com/BelfastTrust

 

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