To ask the Minister of Health to detail (i) why waiting times have increased for patients with haemochromatosis requiring regular venesection; and (ii) what steps his Department is taking to ensure that patients receive timely and appropriate treatment to prevent complications.

Haemochromatosis care in Northern Ireland is provided by a range of specialists in hepatology, gastroenterology and haematology in Trusts as well as care professionals in Primary Care. The condition is genetic and caused by excessive iron in the blood. Management is through regular venesection (bloodletting)

(i) Patients, once diagnosed with Haemochromatosis, require regular monitoring and venesection. This is delivered by Trusts through ambulatory care services and the Northern Ireland Blood Transfusion Service. Unfortunately waiting times have increased for treatment due to limited funded capacity and an increase in demand.

(ii) Diagnosis of Genetic Haemochromotosis follows a GP referral to a specialist in secondary care and attendance at an outpatient appointment. In the initial stages of treatment, most patients must attend hospital for venesection until they achieve a lower target level of ferritin. Once this level is attained, patients require regular hospital appointments every three or four months for venesection to retain the lower ferritin levels. In recent years however, suitable patients have now been given the opportunity to have maintenance venesections through the NI Blood Transfusion Service along with less frequent hospital appointments for monitoring. This has the benefit of releasing outpatient appointments as well as increasing blood donations. The Belfast Trust is currently exploring opportunities to increase the number of Haemochromotosis venesections through NIBTS but this requires additional resources not yet available and stringent governance processes around monitoring.

In addition, UK blood and transplant regulations unfortunately limit the frequency with which NIBTS can offer treatment to patients and are only able to offer venesection every six weeks rather than every fortnight. This is inconsistent with best practice guidelines and limits the number of newly diagnosed patients who can avail of donating blood to NIBTS. Venesections at mobile units can only be provided at scheduled mobile sessions that may not match the regularity required for the patients’ treatment.

Trusts continue to prioritise referrals at triage and have also continued to validate waiting lists and prioritise additional funding when this has been identified.

A limited number of GPs provide a venesection service. Although this is currently only in one locality, GPs are encouraged to take up the voluntary scheme and so provide a local service for patients.