This is an HTML version of an attachment to the Freedom of Information request 'Treatment regime for known haemochromatosis patients .'.


OFFICIAL-SENSITIVE 
 
Information Governance 
 
 
Medical Directorate 
NHS Grampian 
Rosehill House 
Foresterhill Site 
Cornhill Road 
Aberdeen 
AB25 2ZG 
 
 
BY EMAIL 
Date             17 February 2022 
Peter Murtagh 
Our Ref 
FOI/2022/056 
request-824552-
Enquiries to  Information Governance Team 
xxxxxxxx@xxxxxxxxxxxxxx.xxx 
Extension 
51319 
 
Direct Line  01224 551319 
 
Email 
xxxx.xxx@xxx.xxxx  
 
 
  
 
  
Dear Mr Murtagh 
 
 
Freedom of Information (Scotland) Act 2002 
 
I refer to your e-mail dated 21 January 2022, requesting: 
 
“I would like to obtain information regarding the treatment regime for known 
haemochromatosis patients in the care of your health authority. 
 
Specifically 
 
1) 

Between 1st March 2019 and  1st March 2020 how many known 
haemochromatosis patients were receiving venesection treatment ? 
 
2) 

Between 1st March 2020 and 31st December 2021 how many known 
haemochromatosis patients, previously receiving venesection, have received no 
venesection treatment for their condition? 
 
3) 

Between  1st March 2019 and 31st December 2021 how many known 
haemochromatosis patients, previously receiving venesection, have received 1-4 
venesection treatments for their condition? 
 
4) 

Before 1st March 2020 what criterion/criteria was used to triage haemochromatosis 
patients for venesection treatment ? 
 
5) 

Between 1st March 2020 and 31st December 2021 what criterion/criteria was used 
to triage known haemochromatosis patients for venesection treatment ? 
 
6) 

Between 1st March 2020 and 31st December 2021 what procedure/ methodology  
was used to ensure that any clinical  database of haemochromatosis patients’ blood levels 
was accurately maintained and updated?” 
 
 
OFFICIAL-SENSITIVE 

OFFICIAL-SENSITIVE 
 
   
 
I can now respond as follows: 
 
1) 

Between 1st March 2019 and  1st March 2020 how many known 
haemochromatosis patients were receiving venesection treatment ? 
AND 
2) 

Between 1st March 2020 and 31st December 2021 how many known 
haemochromatosis patients, previously receiving venesection, have received no 
venesection treatment for their condition? 
AND 
3) 

Between  1st March 2019 and 31st December 2021 how many known 
haemochromatosis patients, previously receiving venesection, have received 1-4 
venesection treatments for their condition? 
In relation to the above questions NHS Grampian can advise that it does not routinely 
record this information; s.17 of the Act refers – Information not held.  The only way this 
may be obtained is by manual examination of every patient record which is impractical and 
would grossly exceed the limit allowed under the Act; s.12 of the Act refers – Excessive 
cost of compliance. 
 
4) 

Before 1st March 2020 what criterion/criteria was used to triage 
haemochromatosis patients for venesection treatment ? 
Ferritin of above 50 ug/l (sometimes tailored for individual patients who do not tolerate 
venesection). 
 
5) 

Between 1st March 2020 and 31st December 2021 what criterion/criteria was 
used to triage known haemochromatosis patients for venesection treatment ? 
The same as answer 4 above.  Venesections had to be interrupted for a short period 
during peak COVID waves when many treatments were cancelled. 
 
6) 

Between 1st March 2020 and 31st December 2021 what procedure/ 
methodology  was used to ensure that any clinical  database of haemochromatosis 
patients’ blood levels was accurately maintained and updated? 
The database automatically flags any patients who have not had blood tests for more than 
their specified review period (typically 3 months for stable maintenance patients) and they 
can be alerted to book blood tests (patients book their own blood tests at blood hubs 
across the region). 
 
 
  
 
 
Under section 20 (1) of  the  Act, if you are dissatisfied with the way NHS Grampian has 
dealt with your request, you have a right to request a review of  our actions and decisions 
in  relation  to  your  request,  and  you  have  a  right  to  appeal  to  the  Scottish  Information 
Commissioner.   
 
A  request  for  review  must  be  made  within  40  working  days  and  should,  in  the  first 
instance,  be  in  writing  to:  Directorate  of  Corporate  Communications,  Foresterhill  House, 
Foresterhill, Aberdeen, AB25 2ZB or by email to xxxx.xxx@xxx.xxxx 
 
 
OFFICIAL-SENSITIVE 


OFFICIAL-SENSITIVE 
 
Requests for appeal can be made by using the Scottish Information Commissioner’s online 
service  at  www.itspublicknowledge.info/Appeal  or  should  be  made  in  writing  to:  Scottish 
Information  Commissioner,  Kinburn  Castle,  Doubledykes  Road,  St  Andrews,  Fife,  KY16 
9DS Telephone: 01334 464610, Fax: 01334 464611.  
 
If  you  remain  dissatisfied  following  an  appeal  to  the  Scottish  Information  Commissioner 
your recourse is to the Court of Session on a point of law. 
 
 
Yours sincerely 
 
 
 
Roohi Bains 
Information Governance Manager & Deputy DPO 
NHS Grampian  
 
 
 
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