Bardet-biedle Syndrome

Please accept this email as acknowledgement that NHS Western Isles has
received your FOI request below.

As per the Freedom of Information (Scotland) Act 2002, we will aim to meet
your request within 20 days from receiving it. In the eventuality of a
delay arising, I will contact you advising of this and the reason for it.

Regards,

Tina

NHS Western Isles / 37 South Beach Street / Stornoway / Isle of Lewis
/ HS1 2BB

[NHS Western Isles request email] / Tel: 01851 708031 / Fax: 01851 702036

══════════════════════════════════════════════════════════════════════════

From: Ed Fryer <[FOI #933458 email]>
Sent: 05 January 2023 2:28 PM
To: WI FOI-Requests <[NHS Western Isles request email]>
Subject: Freedom of Information request - Bardet-biedle Syndrome

Dear Western Isles NHS Board,

Could i please request information relating to the below

If you treat Bardet-biedle Syndrome, how many unique patients have you
treated in the last 12 months?

What % of these patients get a genetic diagnosis prior to them being
referred onto specialist centres?

If you do not treat Bardet-biedle Syndrome, could I request where these
patients are referred to?

Yours faithfully,

Ed Fryer

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Dear Mr Fryer
Can you please if you have ICD10 code(s) for looking at Bardet-biedle
Syndrome data?
Thanks,
Tina

NHS Western Isles / 37 South Beach Street / Stornoway / Isle of Lewis
/ HS1 2BB

[NHS Western Isles request email] / Tel: 01851 708031 / Fax: 01851 702036

══════════════════════════════════════════════════════════════════════════

From: Ed Fryer <[FOI #933458 email]>
Sent: 05 January 2023 2:28 PM
To: WI FOI-Requests <[NHS Western Isles request email]>
Subject: Freedom of Information request - Bardet-biedle Syndrome

Dear Western Isles NHS Board,

Could i please request information relating to the below

If you treat Bardet-biedle Syndrome, how many unique patients have you
treated in the last 12 months?

What % of these patients get a genetic diagnosis prior to them being
referred onto specialist centres?

If you do not treat Bardet-biedle Syndrome, could I request where these
patients are referred to?

Yours faithfully,

Ed Fryer

-------------------------------------------------------------------

Please use this email address for all replies to this request:
[FOI #933458 email]

Is [NHS Western Isles request email] the wrong address for Freedom of Information
requests to Western Isles NHS Board? If so, please contact us using this
form:
[1]https://www.whatdotheyknow.com/change_re...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[2]https://www.whatdotheyknow.com/help/offi...

For more detailed guidance on safely disclosing information, read the
latest advice from the ICO:
[3]https://www.whatdotheyknow.com/help/ico-...
[4]https://www.whatdotheyknow.com/help/ico-...

Please note that in some cases publication of requests and responses will
be delayed.

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

--------------------------------------------------------------------------------------------------------------------------------------------------------
This email is intended for the named recipient only. If you have received
it by mistake,
please (i) contact the sender by email reply; (ii) delete the email from
your system; .
and (iii) do not copy the email or disclose its contents to anyone.

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References

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1. https://www.whatdotheyknow.com/change_re...
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Good afternoon,
Do you have ICD10 code(s) for looking at Bardet-biedle Syndrome data?
Kind regards,
Abigail

NHS Western Isles / 37 South Beach Street / Stornoway / Isle of Lewis
/ HS1 2BB

[NHS Western Isles request email] / Tel: 01851 708031 / Fax: 01851 702036

══════════════════════════════════════════════════════════════════════════

From: WI FOI-Requests <[NHS Western Isles request email]>
Sent: 12 January 2023 4:33 PM
To: Ed Fryer <[FOI #933458 email]>
Subject: Re: Freedom of Information request - Bardet-biedle Syndrome

Dear Mr Fryer
Can you please if you have ICD10 code(s) for looking at Bardet-biedle
Syndrome data?
Thanks,
Tina

NHS Western Isles / 37 South Beach Street / Stornoway / Isle of Lewis
/ HS1 2BB

[NHS Western Isles request email] / Tel: 01851 708031 / Fax: 01851 702036

══════════════════════════════════════════════════════════════════════════

From: Ed Fryer <[FOI #933458 email]>
Sent: 05 January 2023 2:28 PM
To: WI FOI-Requests <[NHS Western Isles request email]>
Subject: Freedom of Information request - Bardet-biedle Syndrome

Dear Western Isles NHS Board,

Could i please request information relating to the below

If you treat Bardet-biedle Syndrome, how many unique patients have you
treated in the last 12 months?

What % of these patients get a genetic diagnosis prior to them being
referred onto specialist centres?

If you do not treat Bardet-biedle Syndrome, could I request where these
patients are referred to?

Yours faithfully,

Ed Fryer

-------------------------------------------------------------------

Please use this email address for all replies to this request:
[FOI #933458 email]

Is [NHS Western Isles request email] the wrong address for Freedom of Information
requests to Western Isles NHS Board? If so, please contact us using this
form:
[1]https://www.whatdotheyknow.com/change_re...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[2]https://www.whatdotheyknow.com/help/offi...

For more detailed guidance on safely disclosing information, read the
latest advice from the ICO:
[3]https://www.whatdotheyknow.com/help/ico-...
[4]https://www.whatdotheyknow.com/help/ico-...

Please note that in some cases publication of requests and responses will
be delayed.

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

--------------------------------------------------------------------------------------------------------------------------------------------------------
This email is intended for the named recipient only. If you have received
it by mistake,
please (i) contact the sender by email reply; (ii) delete the email from
your system; .
and (iii) do not copy the email or disclose its contents to anyone.

--------------------------------------------------------------------------------------------------------------------------------------------------------

References

Visible links
1. https://www.whatdotheyknow.com/change_re...
2. https://www.whatdotheyknow.com/help/offi...
3. https://www.whatdotheyknow.com/help/ico-...
4. https://www.whatdotheyknow.com/help/ico-...

Dear Mr Fryer

Request for information under the Freedom of Information (Scotland) Act
2002

I refer to the emails below dated 12 January and 24 January
2023 asking you to clarify your request under
the Freedom of Information (Scotland) Act 2002 (FOISA) where you are
asking for information on Bardet-biedle
syndrome. In particular, I asked you to clarify if you had ICD10 codes
for looking at this data.

As you have not responded to my request for clarification, I am unable to proceed further with your request. Under section 1(3) of FOISA, if we ask you to clarify your request so

that we can identify and locate the information you are looking for, then we are not obliged to provide that information until you have given us the clarification we require.

However, if you wish to submit a new
request which more clearly describes the
information you are looking for, we would be able to consider your request and
respond in accordance with FOISA. If you need any further advice and assistance to clarify your request, please contact me. You may also find it helpful to look at the Scottish Information Commissioner’s ‘Tips for requesting
information under FOI and
the EIRs’ on her website at: [1]http://www.itspublicknowledge.info/YourR...

If you are dissatisfied with the way NHS Western Isles has dealt with your
request, you have a right to request a review of our actions and decisions
in relation to your request within 40 working days and we will respond
within 20 working days of its receipt. For this review you should write
to Information Governance Manager, NHS Western Isles, 37 South Beach
Street, Stornoway Isle of Lewis, HS1 2BB stating clearly why you wish a
review to be carried out.

If, following the outcome of a request for review, you are still
dissatisfied you have the right to make an application for a decision by
the Scottish Information Commissioner under section 47(1) of the Freedom
of Information (Scotland) Act 2002 within 6 months of receiving the
response to review letter. The Commissioner can be contacted at Kinburn
Castle, Doubledykes Road, St Andrews, Fife, KY16 9DS or by telephone on
01334 464610 or via the website [2]www.itspublicknowledge.info/Appeal.

If you have any further queries regarding this response please do not
hesitate to contact me.

Yours sincerely,

Carol Macdonald

Information Governance Manager

NHS Western Isles / 37 South Beach Street / Stornoway / Isle of Lewis
/ HS1 2BB

[NHS Western Isles request email] / Tel: 01851 708031 / Fax: 01851 702036

══════════════════════════════════════════════════════════════════════════

From: WI FOI-Requests <[NHS Western Isles request email]>
Sent: 24 January 2023 3:27 PM
To: Ed Fryer <[FOI #933458 email]>
Subject: Re: Freedom of Information request - Bardet-biedle Syndrome

Good afternoon,
Do you have ICD10 code(s) for looking at Bardet-biedle Syndrome data?
Kind regards,
Abigail