UK Government

We accept this recommendation but will balance its implementation against NHS England’s role to promote equitable access for all, the principle that patients should receive the same treatment irrespective of how the disease was acquired, the practicability of implementing different pathways for cohorts of patients, and the latest evidence-based care and clinical guidelines.

The Government’s acceptance in full or in principle of 6a) i-v. is contingent on the clarifications received from the Inquiry.

DHSC and the NHS are committed to ensuring that all hepatitis patients receive appropriate care, including those patients who contracted hepatitis via a blood transfusion or blood products. All patients will have their care overseen by a consultant hepatologist and NHS England has undertaken an audit of current pathways to satisfy itself that patients with a Hepatitis C diagnosis receive appropriate follow-up and monitoring in line with the relevant National Institute for Health and Care Excellence (NICE) and professional guidance.

NHS England will additionally be pro-actively identifying patients with bleeding disorders:
who may have been infected with Hepatitis C but never received a fibrosis test, so not had fibrosis staged, and may have been lost to hepatology services. A framework is being developed to define these individuals and enable haemophilia centres to refer forward to local ODN for fibroscan, and assessment for onward monitoring if appropriate; and
who are known to have been exposed to ‘factor’ blood products. but not known to have been tested or treated for hepatitis. These patients will be contacted and offered testing and signposted to onward care as appropriate.

A new NHS cirrhosis surveillance registry will be introduced to ensure there is a single data source to support the long-term surveillance of patients with cirrhosis.

While the numbers of patients who may require testing and follow-up are expected to be small, NHS England is committed to making every effort to ensure all patients with bleeding disorders who may have historically been exposed, have received appropriate testing, treatment and ongoing monitoring.

Scottish Government

The Scottish Government and the NHS in Scotland are committed to ensuring that all patients infected with Hepatitis C (HCV) through blood transfusions or blood products receive the highest quality care and therefore should be offered appropriate surveillance and monitoring, and that we should ensure these services are being provided consistently. The Infected Blood Inquiry Oversight and Assurance Group (OAG) for Scotland commissioned clinical advice on some of the points raised in the recommendations to determine how they should be delivered.

Ongoing monitoring (including six-monthly ultrasound scans) is already offered for most patients with cirrhosis so the Scottish Government is content that recommendation 6a) i. is in line with current practice. Also in line with current international clinical guidelines, the Scottish Government accepts 6a) ii. in principle for those with advanced fibrosis.
Separately the OAG asked for clinical advice on ongoing monitoring for infected blood victims with chronic Hepatitis B (HBV) and has agreed that the actions the Scottish Government will undertake in relation to recommendation 6a(vi) should also ensure appropriate monitoring is in place for those with chronic HBV.

Welsh Government

The Welsh Government published the Liver Disease Quality Statement in November 2022, which sets out our vision for good quality liver disease services for the next ten years. We are working closely with the Liver Disease Implementation Network (LDIN) to implement the quality statement. Priority areas include improving early detection of liver disease and Hepatitis B and C elimination.

Wales is able to meet recommendation 6 in general and the Welsh Government is currently working at UK level to seek a common position. The Welsh Deputy Chief Medical Officer for Health Services wrote to all Health Board Medical Directors in July 2024 to ask that they consider recommendation 6 in relation to liver disease.

Northern Ireland Executive

Currently in Northern Ireland, as is the case in Scotland, most patients with cirrhosis are already offered ultrasound scans every six months as part of their long-term clinical monitoring. This applies to all patients with cirrhosis, and as such, satisfies the requirements of Recommendation 6a) i.

Complexity arises for those who have been treated in the past and are not being actively clinically reviewed due to their diagnosis predating the availability of fibroscans.

Next Steps

UK Government

NHS England will design a ‘Look back’ exercise to identify a list of people to be contacted and will publish complete guidelines for identification and management of historic HCV treatment population patients, who may not have had fibrosis/cirrhosis assessment, ensuring a linkage to care.

Scottish Government

In relation to 6a) ii. and iii., the Scottish Government continues to work with clinical experts and stakeholder representatives to ensure that appropriate, equitable and high quality care is provided for all cohorts of patients in line with evidence-based clinical guidelines and the principles of Realistic Medicine. Patient care is currently delivered through multi-disciplinary teams overseen by a consultant hepatologist or other appropriately experienced consultant (e.g. a gastroenterologist). However, the OAG is considering whether any further review is required to ensure that those treated in the past had appropriate consultation and assessment. The Scottish Government is also considering a number of options to take forward recommendation 6a) vi. to ensure that appropriate services and support are available to patients in all Scottish Health Boards. The Scottish Government is keen to explore an aligned response with other UK nations in the absence of any divergence in terms of clinical advice.

Northern Ireland Executive

Work will continue with clinical experts, partners and stakeholders to ensure equitable care is provided to all patients in line with current clinical guidelines, and maintain engagement with four nations counterparts, in particular in relation to Recommendations 6a) ii. and iii.