HIV and AIDS in the UK

Baroness Gould of Potternewton Excerpts

Thursday 1st December 2011 Lords Chamber

[Baroness Gould of Potternewton]

My Lords, I start by thanking the noble Lord, Lord Fowler, for making the meetings enjoyable, friendly and determined. We were absolutely sure that we were going to come to the right conclusions. The people out there who work in the field have welcomed the report. I have not heard one negative remark about the report and that says an awful lot, in many ways, about how the noble Lord, Lord Fowler, guided us through those many days. I support the noble Lord in his thanks for the staff. Sometimes we overburdened them but nevertheless they were absolutely wonderful with us. It was certainly a very concerted effort—every Tuesday morning for eight months. As one noble Lord said to me when it was over, he was suffering from Tuesday morning withdrawal symptoms—I am looking straight at him. I think that that applied to many others. If I raise any criticism of the response, this is in no way a criticism of the officials in the Department of Health, with whom I have worked for many years, and all of whom are fully committed to building the sexual health services, including for HIV, from the Cinderella service that it was to the improved service that we have today. Even the response goes in the right direction of travel. At this point, I declare an interest, among many, as chair of the Sexual Health Forum and as chair of the All-Party Parliamentary Group on Sexual and Reproductive Health.

I reiterate what the noble Lord, Lord Fowler, said—that the Select Committee was right to focus on prevention as a theme of the report, whether relating it to raising awareness, education, testing or treatment. It cannot be said too often that HIV remains the most serious infectious disease affecting the UK and prevention is the only way we will make that change. We had an interesting short debate during the passage of the Health and Social Care Bill on the need for national sponsored awareness-raising campaigns. But as with the response to the Select Committee report, I did not get any real assurance that national campaigns were on the agenda. While accepting the need in some instances for targeted campaigns—£2.9 million has been spent on those campaigns—there appeared to be a complete rejection of the idea of campaigns directed at the general public. That is a serious mistake as it does not take into account the rising number of UK-acquired infections among people not in the high-risk groups, who now account for more than 25 per cent of newly diagnosed infections each year. However, I was pleased to see the welcome given to the National Aids Trust website, HIV Aware, which directs its messages of prevention and awareness specifically to the general public. This is a classic example of the important role that the third sector plays in the alleviation of HIV and support for those affected. Has thought been given by the department or the Government as to how we could nationally disseminate the themes of the HIV Aware campaign more locally so that there is uniformity of message throughout the country? It would cover high prevalence groups as well as the wider audience. It would raise awareness and provide information and advice at very little cost. I do not think the argument against that can relate to cost.

Also in terms of awareness-raising, I was pleased to note the work taking place among faith leaders. As our visit to Leeds highlighted, it was possible to have dialogue with some faiths, but in other instances it proved to be very difficult. It is terribly important that this work is expanded for us to influence what is happening among some of the groups who find it difficult to accept HIV.

Overall, the public have become less aware of HIV and that has created widespread public ignorance. As the noble Lord, Lord Fowler, said, the lack of awareness by the public is one of the reasons why stigma persists and why there are so many mistaken beliefs on the supposed dangers of HIV. This creates a negative and judgmental attitude towards people with HIV. Stigma is still a daily reality for many people living with HIV. As in the instance given by the noble Lord, Lord Fowler, it can have a devastating effect on the life of someone with HIV and can often be compounded by profound health inequalities—for HIV is also about health inequalities.

Most importantly and crucially, stigma can deter someone from being tested. Ignorance makes people very frightened of being tested in case they then have to face the consequences that go with it. Preventing the spread of HIV has to involve the promotion of early testing and the widening of the scope of venues where testing can take place in order dramatically to reduce the estimated 22,000 people who have HIV but do not know it—the 25 per cent who are undiagnosed but might be furthering transmission.

As the Select Committee Report states, HIV testing must become normalised. An offer should be made to newly registered patients in general practice as well as to general and acute medical admissions. The Department of Health’s important screening pilots have shown that staff and patients welcome more HIV testing in hospitals and in primary care and community settings. However, for the future, it will be for healthcare professionals and local authorities, when they take over in 2013, to follow that work through. I am putting a positive slant on the Government’s response that they will consider favourably the Time to Test report. Perhaps the Minister can confirm that I am right to be optimistic.

The evidence of success of this approach is made forcibly by the success rate of antenatal clinics where an offer is automatically made and, as a consequence, mother-to-child transmission is at a very low level. I heard this morning at a meeting of how, when the fathers turn up at the clinics, staff can try to persuade them to have an HIV test. Many have previously been resistant to that. They are examples to learn from. The high level of acceptance of an offered test makes economic as well as medical sense and that message needs to be repeated. Prevention of half those undiagnosed cases would save the country £1.2 billion in healthcare costs. More than half the people are diagnosed late and some are already very ill, which again leads to far higher annual treatment costs. If we could have early testing, we could have early treatment and reduced costs.

The work being undertaken by MedFash, referred to in the Government’s response, will, I am sure, be invaluable in providing an interactive tool to support GPs and primary care staff in offering HIV testing as it will enable those staff, among whom there is great nervousness about making an offer, to do so. That barrier needs to be looked at much earlier and we must think about having discussion of HIV in medical schools and nurse training, so that when staff are faced with such questions, they know the answers. Instead, they are finding it very difficult.

It is also very important that we look for a positive outcome to the public health outcomes framework indicator on late diagnosis. I appreciate that many are being considered in the public health field and I know that the Minister cannot give me an answer. However, I am hoping that she will say that I can be optimistic.

One of my concerns about the new structure—although I am a strong advocate of public health moving into local government—is the design of the new commissioning structure and the inter-relationship between the different elements that make up that structure. This is particularly important for HIV because of the expected split between treatment and care and between prevention and testing. The split of functions may be inevitable, or it may not be; it might still be changed. I understand the case made by the Government in relation to other infectious diseases. I welcome the commitment that prevention work will not become isolated from treatment services. However, I would like to hear a little more about how that will happen in practice. Perhaps the Minister can elaborate on the mechanisms that will ensure that that prevention work does not become isolated from treatment services.

In conclusion, I should like to make three short points. On standards, the response indicates that the provisions set out in the Health and Social Care Bill allow for the development of quality standards for social care and public health, opening up the possibility of quality standards that fully support integrated care pathways. The question that follows, however, is whether comprehensive guidelines will be produced to make that system consistent and effective or will it be left to each locality to determine how that works. In some it might and in others it might not.

The committee recommended that NICE be commissioned to develop treatment and care standards for HIV specifically. While there are excellent standards produced by BHIVA, they do not address the need to co-ordinate specialist health HIV services with other services. I hope that the Government might reconsider and take up the recommendation that was in our report.

My next point relates to charging for HIV treatment and care and the recommendation that HIV should be added to the list of conditions in the NHS (Charges to Overseas Visitors) Regulations 1989. This is a matter which the noble Lord, Lord Fowler, the noble Baroness, Lady Masham, and myself will be raising during the passage of the Health and Social Care Bill. I am not asking for an answer to that today. However, I understand that a review is being undertaken and it might be helpful if we could know when the review is to be concluded.

Finally, I want to say a few words about tariffs. The response indicates that funding methods such as block contracts provide no incentive for organisations to improve patient care. In the light of that clear and positive statement in the response, can the Minister clarify the decision in the Health and Social Care Bill not to allow national tariffs for public health, including sexual health? Not to allow a level of flexibility of tariffs will almost inevitably mean a return to block contracts and therefore, as the response says, diminished patient care. There is a clear contradiction here and I think that it needs clarification.

Much has been achieved in the past. However, if we are to maintain momentum and respond effectively to the challenges of a growing epidemic, we need a national, holistic strategy on HIV, a view endorsed by the HPA in its report earlier this week. We need a strategy that encompasses the findings of the Select Committee report: early diagnosis, effective treatment and social care, HIV prevention and testing in a wide range of settings, laws and policies to eliminate stigma and discrimination, a well-trained workforce and the reduction of health inequalities. That is the approach that I hope we will see in the planned sexual health policy framework, which gets a number of mentions in the response to the report. Only then can we be assured that the momentum that has been achieved can and will be maintained.