17 November 2022: Panel on finding the undiagnosed - B

The questioning returned to the Scottish situation. The elimination aim was expected to have everyone treated by 2014. Each Health Board has a portion of the target to achieve. Some aspects of the strategy were targeted at groups such as IV drug users. There were financial incentives to reach or exceed its treatment targets. (So, did that influence how we were encouraged to take the treatment?) A range of actions have been implemented by Health Boards, including: awareness-raising in addiction centres; annual testing of those on substitute drugs; dry-spot testing; GP awareness-raising to identify risk factors; among others. But things were held up to a great extent by Covid. Some look-back activity had been carrier out previously. Records destruction has been a problem (tell us about it … welcome to our world), and even the large transfusion ledgers are not specific in many ways (… are those the ones we were told had been destroyed?). Blood left the labs with a patients’ name on it but there was no way of knowing if it was actually used. Discharge summaries were in the old Lloyd George folders and these too are not too helpful. Currently, only about 50% of transfusions are recorded on discharge summaries. Recent identifications of HCV patients have not included any infected blood patients. A question on palliative care was raised. For liver disease it is an emerging need, but there is no specific funding for it. Palliative drugs are changing. He could not remember the last time a liver transplant was done due to address a Hep C patient need. There are now hardly any Hep C patients in hospital liver wards.

The picture from Wales obviously had comparisons to the previous witnesses evidence. In 2017 there was a document related to how Wales will achieve the WHO targets to eliminate HCV and HBV by 2030. The document gave a background to the situation and history from Wales. It mentioned people who had been identified (about 5,000 but updated by the witness to be about 8,000 people) but who had not engaged with treatment. About 10% of them (the 8,000) responded to a letter and 62 received treatment. Covid interrupted the work to get to the other 90%, but that is now re-starting. The aim is now to match names up to local teams, but there are gaps in information. As usual, the focus is on the cohorts considered most at risk of being a risk, such as IV drug users. There was a mention of prisons. The responsibility has been pushed out the Health Boards and Area Planning Boards, but there is no central funding pot for this work. As the clinical lead, the witness himself has one half-day a week. Any monies are only for short-term activity, which limits the capacity to attract staff and plan provision. In 2015/2016 a funding package was proposed, but the Welsh Government did not support the proposals despite recognising having signed up to the WHO aims. They did “accept in principle” the proposals but expected the costs to be absorbed locally. In turn, local Health Boards made available the Direct Acting Antiviral (DAA) treatments and in two years had caught up with the backlog of those requiring treatment. Since then, the focus has been working with services working with those considered most at risk (i.e. illegal drug users). Educational events have targeted primary care providers to raise awareness of the new and more effective treatment options. Wales is following the situation in England and have tried to match some of the initiatives, but these have not resulted many outcomes in terms of new people being identified and treated. There are fewer activities ongoing, with the expectation being that most people infected had been identified, hence the pausing of the actions not producing results. The rurality of Wales has made testing being available in pharmacies a feature, but it too has not yet produced many results. The point was made that people who may have been infected by contaminated blood may not want to access a service mainly aimed at drug misusers (i.e. connected to a needle exchange), but the witness was able to explain the different access points for such patients, such as through their hospitals.

Northern Ireland had a fairly new to post witness. The NI Hep C Elimination Plan only came out in 2021. The focus is on those with a history of injecting drug use. Infected blood infectees are among the “others”, and their need is not specifically funded. The IV drug users are seen as the main risk group and least likely to engage, but that is a Phase 1 focus. HCV is a notifiable disease in NI and that allows tracking of people identified. There have been no new HCV cases identified for some years in NI which have a link to infected blood. Back-tracking those who received blood transfusions was something the witness could not comment on. There have been information sharing actions, such as linking to World Hepatitis Day and dissemination via social networks. There is a Managed Clinical Network, and it produces reports, including a listing on transmission routes. About 7.5% (or 128 out of 1,696 people) were infected by blood transmission routes. Since 2019 their database has been used to contact people who had potentially not been identified before. The future plans are still under review, and the witness recognised the value of what had been said that day by the other witnesses and had taken notes.

Counsel moved to a general panel discussion. On the case-finding tool and Bristol University study in England, the others have a “wait and see” approach before acting to do similarly. Scotland also has a Bristol University link. Counsel noted how all had mentioned the impact of Covid and wanted to know if Hepatitis elimination would still be a funding priority post-Covid. England expected things to continue. Scotland were waiting for a decision since, for example, the teams were broken up to deal with Covid. There is concern that these teams may not reform and there has been a loss of key relationships with vulnerable groups. Northern Ireland was fairly late in publishing their strategy, so hoped to continue making progress. Wales were concerned about pitching for funding in a period of tight constraints and had to be realistic about prospects.

Going forward, it was recognised that there will be a challenge on those aspects of elimination strategies involving GPs. GPs were very frontline during Covid. Many have been lost from the profession. There are not enough GP already and not enough coming through, so expecting them to add Hepatitis testing and other elimination actions to their workload will be difficult. Awareness-raising would include identifying the symptoms of someone who may be suffering from the effects of viral hepatitis. Liver function tests are part of clinical diagnostic centre policy, so it may be about targeting and piggy-backing on broader programmes. They need the statistical data to know what the scale of the need is before acting. The prospect of using a public information campaign was floated, but the Scottish experience of 10 years ago was of spending about £7.5million and it did not produce anything significant. The others are waiting for the data but would not want to push for a campaign yet, if at all, in case it was a waste of time and money. Their shifting focus is to look more towards a liver treatment setting and not a specific Hepatitis route. That was expected to result in more likely funding and better buy-in from medical colleagues. It was mentioned that there are potential harms from a screening programme, such as arising from false-positives. It is also one thing to identify people, but there have to be the services to treat people identified.

England found it difficult to engage with pharmacies and was envious of the Scottish success. Mass testing is not the simple answer. Recently, there were two false-positive HIV results which was very distressing for the people concerned. The good response from pharmacies in the Scottish witnesses’ local experience was hoped to be replicated across Scotland. There need to be options of more discrete access routes to testing rather than needle-exchange settings. Postal and online strategies were seen as positive options, based on the positive English experience.

Finally, on the tracing of people, it is clear that sub-optimal record keeping has been an issue. The move away from paper-only records is an improvement. There now seem to be a number of good systems, but they do not link well to each other. The risk in the future may not be so much about blood only transmission issues, but the need will be for good information being available generally about patient treatment and health issues holistically. Also, patient records being available to patients would be a great improvement.