FOI Request
- Disclosure ID
- FOI/03396
- Request Date
- November 4, 2019
- Subject
- Genetic Haemochromatosis - 04/11/2019
- Description
1). For the period 1st January 2018 to 31st December 2018 (or the most recent 12 month period available), the number of patients diagnosed with genetic haemochromatosis under your care.
2). For the period 1st January 2018 to 31st December 2018 (or the most recent 12 month period available), the average time in days from first referral from primary care to the patient’s first appointment within your trust.
3). A copy of the protocol and/or patient pathway applicable to the care of people with genetic haemochromatosis
4). The date that your protocol/patient pathway for genetic haemochromatosis was last reviewed or revised.
5). A copy of your clinical protocol(s) for therapeutic venesection.
6). The date that your protocol(s) for therapeutic venesection were last reviewed or revised
- Response
1). We do not routinely record this information, to retrieve it would require a manual trawl of patient case notes which would exceed 18 hours. This information is therefore exempt on the grounds of cost (Section 12(1)).
2). Patients referred by their GP with suspected genetic haemochromatosis would be referred into a general clinic to be seen by a consultant – there is no coding to identify them and there is no clinic we can isolate to identify them. They would then be moved into a follow-up clinic for treatment along with other patients already in the clinics for follow-up treatment. Therefore we have no means of identifying the new patients without a manual trawl of patient records which would exceed 18 hours. This information is therefore exempt on the grounds of cost (Section 12(1)).
3). Our Trust does not currently have a working protocol or patient pathway applicable to the care of people with genetic haemochromatosis, but a draft proposal is currently under review
4). N/A
5). Our Trust does not currently have a clinical protocol for therapeutic venesection.
6). N/A