|Back to Table of Contents
|Lords Hansard Home Page
Lord Dholakia: My Lords, the Minister mentioned the powers of the Commission for Racial Equality. Does he accept that there are no enforcement powers under that section? That is why the commission is concerned. Nor can it subpoena witnesses. If a discrimination notice comes in, it cannot issue non-discrimination notices on an investigation of that type.
Lord Bassam of Brighton: My Lords, I believe that what the noble Lord said is correct and I shall try to check the point. Once the Act is extended, in our view the commission will be able to go further in respect of direct discrimination. Direct discrimination in the case of law enforcement, whether or not intentional, is more likely to fall within the definition of "direct discrimination."
The noble Lords, Lord Lester and Lord Avebury, asked about the exemption of immigration, nationality and asylum and whether the provision had been too widely drawn. We believe that the existing safeguards provided by Section 41 of the Race Relations Act for acts done by a statutory authority are insufficient to allow the immigration system to continue to operate as Parliament intended. Section 41 protects discriminatory acts which are carried out in pursuance of statutory provisions for ministerial arrangements. That was explained earlier. The courts have adopted a narrow interpretation, as required by law. The operation of an immigration system necessarily requires the exercise of some discrimination by Ministers and appropriately authorised officials. The authorisations are necessarily detailed in operational staff instructions approved by Ministers. It would therefore be impractical to set out in legislation every set of circumstances where discrimination would be required. I trust that that answers the question.
There are other examples such as those covering entry clearance officers overseas who need to be able to treat people differently because of their nationality or ethnic or national origin. That includes countries
Lord Lester of Herne Hill: My Lords, I apologise for being like a jack-in-the-box this evening, but I hope it is helpful to probe a little and give the Minister time for reflection. Does he agree that it is in no sense the policy of the immigration and nationality department of the Home Office ever to discriminate against anyone on the basis of their ethnic or national origins? The example he gave was not about discriminating against someone because of their ethnic or national origins. It is an example of making special treatment or a difference in treatment an objective reason that has nothing to do with ethnic or national origins. It would be a disaster if the immigration and nationality department were regarded as having a policy of discriminating on the basis of ethnic or national origin in naturalisation, immigration or anything else.
Lord Bassam of Brighton: Yes, my Lords, in a sense the noble Lord adds to my explanation and I find the intervention helpful. However, the general point I am trying to make is that there are occasions when there will be forms of lawful discrimination. There is a difficulty in drafting legislation to take account of that in relation to indirect discrimination. It is a matter for further debate and we can probe the issues more as we progress. I should like to make progress in answering points other noble Lords made in the debate.
The noble Lord, Lord Patel, asked whether the Bill would be used to remedy the different treatment of small partnerships under the Race Relations and Sex Discrimination Acts. Partnerships are governed by the employment provisions in the legislation and this Bill addresses public functions that are not currently covered by it. The Government have promised to bring forward further legislation in relation to proposals made by the CRE and others as soon as parliamentary time permits.
The noble Lord, Lord Avebury, asked a number of important questions. He asked about Clause 5 which provides for certain cases to be heard by the immigration appellate authority. How could an individual pursue his or her claim for damages in the county court, assuming it is upheld by the immigration appellate authority, if the substantive appeal was not upheld and the person concerned was no longer in the UK? The answer is that anyone from abroad who wishes to bring a claim before the county court will be given leave to enter the UK precisely for that purpose if his or her presence is necessary for the resolution of the damages claim. That position is perhaps not as unusual as it sounds. It happens now in a number of circumstances, for example, in custody cases. Noble Lords will note that the Bill provides that in the case now being considered the county court will presume
The noble Lord, Lord Avebury, also commented on the Home Secretary's observations on travellers. It is widely recognised that the Home Secretary is committed to the elimination of racial discrimination and hatred wherever it occurs. He has an excellent track record in that respect. My right honourable friend's comments referred primarily to itinerant individuals regardless of race who engage in criminal activity. He sought to say that in that respect no one should be above the law. I am sure that that is something which broadly we all support. The noble Lord also asked whether the Bill would have any effect on Section 33 of the Race Relations Act. I cannot comment on the details of the particular case that the noble Lord mentioned, but the Bill will not have any effect on Section 33 of the existing legislation.
The noble Lord, Lord Avebury, also asked whether private sector companies would have to be listed separately in the schedule each time they started to carry out public functions. Under Section 19(b)(i) bodies can be added to the schedule by order. That order can refer to bodies individually or by description. In the case of private sector bodies which run prisons, it is our intention to list by description. It will therefore be unnecessary to amend the schedule each time a new or different private sector body contracts with the Prison Service.
The noble Lord, Lord Ahmed, asked why the Bill did not cover religious discrimination. I am aware that that is a matter that particularly exercises the noble Lord, and it is one in which many of us take a keen interest. The Government are alive to the concerns about religious discrimination and the case put forward that it should be subject to law. This issue raises difficult, sensitive and complex questions. We do not believe that there is a ready answer or quick fix solution to it. We have commissioned research to assess the current scale and nature of religious discrimination and the extent to which it overlaps with racial discrimination in England and Wales.
The noble Lord, Lord Dholakia, asked why a duty to promote equality was not included in the Bill. I answered the point earlier but I shall reinforce it. The Government's Statement on equality published on 3rd November explained that they wished to bring forward legislation to introduce a duty to promote equality in a coherent, constructive and thought-through manner. We believe that this suggestion goes far beyond the remit of this Bill and covers other important issues of equality. We want to try to deal with the matter in those terms.
The noble Viscount, Lord Astor, asked whether there was a timetable for the Stephen Lawrence action plan. The action plan is being progressed as quickly as possible. We made a commitment to bring forward legislation on those points, and this Bill is an important instalment in that process. We shall meet and match all of the commitments that we made following publication of the Lawrence public inquiry report.
This has been a long and interesting debate, which I have enjoyed. I hope that I have answered many of the points and questions that have been raised tonight. The Government will continue to listen. At the outset of the debate I invited people to meet us and discuss some of the issues that they wished to see resolved in the Bill. As ever, our door remains open. In this Bill we believe that we have a pragmatic and workable measure to match an important commitment. I commend the Bill to the House.
The noble Baroness said: My Lords, just before National AIDS Day this year I chaired a conference at the National Children's Bureau on Children Living with HIV and AIDS. This Question arises as a result of that conference and some of the problems presented there. I am grateful that many Members of your Lordships' House, present and absent, have shown interest in this issue. The problems relate to young people who are themselves, or who have a family member or friend, infected by HIV or AIDS. My Question is concerned with the UK. I am aware that similar and worse problems exist in other parts of the world, particularly poorer countries. Some of your Lordships know a great deal about these issues.
I shall begin with a brief statement on HIV and AIDS statistics in the UK. I shall then discuss some areas of concern with reference to research and the experiences of young people themselves. In the UK 774 children under the age of 15 are known to be infected with HIV. This includes 317 with AIDS. Infection is transmitted largely from mother to child before or during birth or through breast feeding. There has been a marked increase in HIV in children of parents from sub-Saharan Africa. There is no accurate prediction of the life expectancy of these children. Barnardo's estimates that there are more than 4,000 children in the UK whose mothers are HIV positive and that about 500 children have lost their mothers through AIDS.
Several organisations have expressed concern about the multiple problems of children who are infected with, or affected by, HIV and AIDS. For example, the charity Children with AIDS has spelt out concerns such as: children may be ill from taking medication; education is likely to suffer; they may care for a sick relative or visit someone in hospital; the home environment of children may be stressful; children may face fostering or adoption; they may be faced with family bereavement; they may be living in low income families either because of their immigrant status or because the adults have become too ill to work; children may feel that they are not included in
Families who live with HIV and AIDS may have the following problems: prejudice and stigma; fear of confidentiality being breached; economic hardship; uncertainty about the future; fragmented services; cultural and language vulnerability; and limited knowledge of medical treatment and care issues.
The Council for Disabled Children, in its submission to the All-Party Parliamentary Group on AIDS, suggested that a national strategy to address the problem of children living with HIV and AIDS should include certain elements. First, there should be health education and promotion to raise awareness and the appropriate information should be provided. Secondly, there should be prevention strategies related to antenatal testing and new combined therapy treatments and decisions about breast feeding, for example. Thirdly, there should be family support policies using multi-disciplinary teams. Fourthly, there is concern about young carers--young people with or without HIV status--who may support and care for one or more family member who is ill. This may impinge on their educational and leisure needs.
In its review last year of support services for HIV-affected families and carers the National AIDS Trust identified three issues: the concerns and needs of those affected by HIV and AIDS in the UK; the existing services for those thereby affected; and the barriers to providing those services. Needs and concerns included the issues of tackling social stigma, isolation, lack of information about HIV/AIDS, emotional trauma such as bereavement, problems of travelling to places of support, particularly in rural areas, pressures on carers, and employment issues. Disclosing HIV status to family and friends appeared to be a source of immense distress.
The survey of service provision was carried out regionally and covered statutory and voluntary provision. The extent of provision varied across the UK with particular problems outside cities. Fewer than 30 per cent of those organisations responding said that they provided specific support services for children affected by HIV and AIDS.
Barriers to service provision were said to be a reluctance by those affected to use services, lack of resources, lack of identification of needs of those affected by HIV/AIDS and poor working links between organisations providing help and support.
The National AIDS Trust summarised the way forward as the need to form a national network with a contact directory for those affected, to provide information perhaps through a publication, and to address the unmet needs, such as isolation, of those affected.
Finally, on education and health promotion, last year Brook Advisory Centres carried out some focus group research with 14 to 18 year-olds to gain awareness of their perceptions of HIV and AIDS; what the terms mean; whom they affect; preventive behaviour and sources of information. The major concern of those young people was with pregnancy rather than HIV, and we must be vigilant that HIV/AIDS does not slip off the agenda for young people.
I was particularly touched to read in the Why Me? booklet the stories of those young people who are, together with the demands of school and other aspects of life, responsible for a relative with HIV or AIDS. I conclude with an extract from a contribution to the booklet by one of the young people. I have copies of the booklet if noble Lords are interested in it. She says:
Baroness Masham of Ilton: My Lords, I am pleased that the noble Baroness, Lady Massey of Darwen, is asking this Question today. Christmas is a time when many people like to be with their families. It is a time of giving and sharing. I am pleased that, by taking part in this short debate, this small band of noble Lords is sharing some thoughts on the needs of children living with HIV/AIDS.
There are many difficult medical conditions with which parents and children have to contend, but HIV/AIDS is much the most difficult to live with outside a special unit, as it is shrouded by confidentiality. Grieving and coming to terms with the condition has often to be done in private. Hidden grief is so much more difficult to live with. For children it must be even worse.
Many people shun an infection. With HIV/AIDS people's attitudes differ greatly. The very best can come out; and the worst. For people living with HIV that unpredictability among members of the family, schools or the public, can mean insecurity, loneliness and living with a secret.
Last week on the radio programme "You and Yours", I heard a young girl say that there was no education on HIV in her school. Another person said that HIV education was not included as part of the core curriculum. As we live in a period of reform and change, what is the present position about education on HIV in schools? At one conference I attended I heard two head teachers saying that they preferred outside experts to come into the school. If that is not possible in some areas, it is important that teachers are equipped with the correct teaching packs so that they can attempt to cover this sensitive and difficult subject.
For your Lordships' information, I should like to go back in history for a few moments. On 14th July 1983, Lady Dudley asked the first Question in your Lordships' House on the incidence and control of AIDS. The noble Lord, Lord Glenarthur, answered for the Government. The noble Baroness, Lady Gardner of Parkes, and myself asked supplementary questions. The Minister said that there was no conclusive evidence that AIDS was transmitted by blood or blood products. In 1983 there had been 14 confirmed cases of AIDS.
On 18th March 1985 the noble Baroness, Lady Cox, introduced a debate on prevention and control of AIDS. With other noble Lords, some of whom have now died, I, too, took part. Afterwards, several of us were accused of scaremongering. If noble Lords read the report of that debate--it is available in the Library--they will note that some of the questions we asked then are still being asked today. I refer to the need for counselling, the importing of blood products and the need for adequate education.
Only today a doctor told me that he thought the infection rate of HIV had gone down. Unless the impetus on health education is kept up, society will become complacent and more children and their parents will become infected.
Most HIV/AIDS initiatives and funding tend to concentrate on adults. Responses for children have lagged a long way behind those for adults and tend to be fragmented, ad hoc and inconsistent. However, one place which has kept up with the times is the Mildmay Mission Hospital in Hackney. Mildmay was not only the first hospice in Europe for people with AIDS; it was the first and only residential family care centre in the world available to care for the whole family. On many occasions, I have heard the noble Lord, Lord Morris of Manchester, say that a disabled child can mean a disabled family. Mildmay has recognised that.
The unit, like all the others on the Hackney Road site, is full to overflowing and has a waiting list. It recently opened a further six rooms, thus caring for 12 families. The nursery is oversubscribed. It is registered to cater for 30 children, but the social services will fund only 20. It is open seven days a week, collecting the children in the morning and returning them in the evening. It has to prioritise, depending either on the needs of the children or the severity of the illness of the mother or father.
The children are taken in from the age of 28 days to eight years. They have access to all the services that are provided for adults. However, the bereavement counsellor is especially trained to deal with children. Once a week, a consultant paediatrician from Great Ormond Street visits the centre. It has been found that if the mother has HIV and is given the anti-viral drug AZT in late pregnancy and during labour, and if it is given to the baby for one month, transmission is reduced by 68 per cent. It also reduces trauma to the baby during delivery, which is done by caesarean birth before the 38th week of pregnancy and before the onset of labour. Furthermore, the avoidance of breast feeding reduces transmission.
If the mother's viral load is high, she receives full combination therapy and other measures. If her viral load is low, she receives AZT alone and other measures are taken. It is important that mothers who are HIV positive know that they are. Therefore testing and counselling should be available to all expectant mothers if they believe that they could be at risk.
Another supportive, warm and friendly organisation which helps HIV-positive children and teenagers as well as heterosexual adults is Body and Soul. It has adapted two old wards in the Homeopathic Hospital in Great Ormond Street. I was pleased that the noble Baroness, Lady Amos, visited the organisation with me. She was impressed. Young children have their own play area, giving mothers a break. Teenagers receive support and go on interesting holiday breaks.
Psychological support is much needed. Young children and teenagers having the extra discipline of taking combination drugs sometimes early in the morning and throughout the day need some relief and a lot of support. Sometimes they are supporting their ill parents, too. Such good organisations need support to keep going. Perhaps the Minister will also visit them.
It was a complex tragedy for the haemophiliacs who became infected with HIV and hepatitis B and C. The biggest new problem for those suffering with HIV and hepatitis C is that they have to take two sets of combination drugs which can react against each other, damaging the liver. The drugs can also become less effective. Historically, the problem has been complex with the infected Factor 8 coming from America, Britain then making its own, and last year Britain deciding to import again because of the new variant of CJD. Is that still a concern?
I want to ask the Minister about the six-week window of testing. How up to date are we in identifying HIV in potential blood donors? Testing will identify HIV only after about six weeks. However, it seems that in the USA infection can be identified much sooner because it has an advanced testing procedure. Are we lagging behind? Is there more we can do to improve our Blood Transfusion Service?
All the families in the Macfarlane Trust have been affected in some way. There are 148 widows with dependent children. Fourteen of the widows are infected with HIV. Just think of explaining to sensitive children what has happened to their fathers. Twelve haemophiliac children with HIV are still living; 39 under the age of 17 died. Of the adults, 785 have died and 454 are still living. I had the privilege to be invited to a private meeting of women affected by haemophilia and HIV. I can assure your Lordships that there is grief, anger, hardship and many family complications. They need everyone's support.
There is much to be done to prevent more children being born with HIV. There is much to be done to support those living with HIV. I hope that the Government will not submerge the real needs of HIV in an overall sexual strategy. HIV needs its own identification and strategy. I know that the noble Lord, Lord Hunt, as a former member of the All-Party Group on HIV and AIDS knows this. I hope that today he will give us hope that the Government will not let HIV slip down the health ladder.
Lord Winston: My Lords, I am grateful to my noble friend Lady Massey for introducing this short debate on an important issue and I want briefly to address two areas. I had intended to address only one during the nine minutes allotted to me and should have taken perhaps only four minutes. Unfortunately, my noble friend--perhaps I may call him that even though he is a Cross-Bencher--Lord Patel, who is a most distinguished obstetrician, had to leave to attend a meeting and is therefore unable to participate in the debate. I promised that I would try to raise some of the points he intended to make as a leading obstetrician and former president of the Royal College of Obstetricians and Gynaecologists and someone much more experienced and weighty than myself.
The first issue concerns children affected with HIV in this country. Each year, about 300 babies are born with HIV and it is clear that we could do more to prevent that. The noble Baroness, Lady Masham,
Secondly, major progress is being made in the area of certain viruses. Surely, it is in the interests of the pregnant woman to know that she may be infected. Research in my own institution at the Hammersmith Hospital, London, shows that we shall acquire better methods of tracking the disease and treating it in due course.
Therefore, I hope that the Government recognise the fact that we should be more active in offering screening services, which are relatively cheap, auditing what is happening as regards their take-up and ensuring that money is spent in counselling and support. We are lagging behind the EU in that respect and we need to do much more. It is rather sad that we are not as good in that respect as other countries.
I must say to the Minister that almost every Royal College--I believe with the exception of the Royal College of Surgeons, although perhaps I am wrong and it is also included--has agreed on the need for better screening during pregnancy. Without that being promulgated in trusts there is a major problem.
The other concern that I want to raise briefly is that this is not only a British issue. Three weekends ago I was face-painting children in an orphanage about 40 miles outside Nairobi. It is difficult to describe to your Lordships what that meant. Each of the children that I face-painted was an orphan because its parents had died from that infection. All the children in that orphanage were infected with the virus. I had on my knees a child aged three-and-a-half, who was the size of my own son when he was about nine months old. The child was constantly coughing; he had open tuberculosis. He was blind, but able to sign what he wanted to us remarkably and he was in amazing control of his environment.
There are 350,000 such children in sub-Saharan Africa. I doubt that that child is actually alive three weeks later, because his tuberculosis was too far gone and untreated. The truth is that it is not only an African problem; we cannot just say that that is Africa. They are real people. Those children are remarkable; when I walked around that orphanage I observed that when they fell over, they wanted to be cuddled. When they wanted to play, they wanted to play with an adult.
The truth is that we can no longer regard this as a problem of the third world, because, with the exception of poverty, all the other consequences also affect us because those diseases spread to other countries; the bacteria such as tuberculosis, which cannot be treated with modern antibiotics, will spread with air travel. The consequences of poverty in those villages has a knock-on effect in terms of national unrest, strife and war. It is quite shocking--I direct these comments at those noble Lords who have not been to that part of Africa--to see whole villages where no one is working and where no one can care for people who are growing old. It is quite a revelation and one that must drive us to tears.
In one of those areas in sub-Saharan Africa I met a Catholic priest named Michael Meegan--a most remarkable man and a deeply religious Catholic, who demonstrated clearly that by getting into the mindset of the Africans and getting inside the prevalent culture, he could really influence the effect of the transmission of HIV. That is in a country where, for 30p, one can buy a prostitute in Nairobi. Yet he was able to demonstrate, as a Catholic priest, that by giving appropriate condom protection to villagers he could actually reduce the infection.
What is remarkable is that he was doing that with hardly any support and he was carrying out scientific surveys of the results of his work among the African population and publishing it in scientific journals. I found it sad that he told me that he was unable to get in touch with any British Government Minister and that indeed he had not received an answer from the Prime Minister when he wrote to him. It seems to me that we should be listening to such people on the ground much more and offering them as much support as we can, because, as I said, this is a problem for which we all have some responsibility.
Earl Baldwin of Bewdley: My Lords, we are all grateful to the noble Baroness for asking the Question. I am spurred to contribute to the debate by some unfinished business surrounding a series of Starred and Unstarred Questions which I tabled in 1997, and on which I later corresponded and traded scientific evidence with the noble Baroness the Leader of the House when she was at the Department of Health. The Minister will not be surprised that I take a rather different line from other speakers.
What I was asking two years ago was not specifically directed at children, but it has such general relevance to the problems of HIV and AIDS that it will be helpful to summarise it before looking at children and how they can best be helped. My focus was on long-term survivors. There are a good many of those around, some of whom have lived with a full-blown AIDS diagnosis for years. The curious thing, to a layman, is that no one knows how they have survived,
Quite apart from the fact that drugs such as AZT are so acutely toxic that it is unlikely that already depleted patients could take them for as long as five years and survive the treatment, there are any number of references in the medical literature to the fact that long-term survivors have shunned antiviral medication. In the nearest thing to a systematic survey, the AIDS activist Michael Callen, no friend of unorthodox methods, reported that of the many survivors he interviewed, only four had ever taken AZT, while all of them had,
A presentation by the Parliamentary Group for Alternative and Complementary Medicine, which I chair, also in 1997, underscored those points. Three long-term survivors of HIV or AIDS told how they had turned their back on conventional treatment and remained healthy on regimes which included herbs, meditation, psychotherapy, optimum nutrition and other non-standard approaches. They mentioned two other factors of interest. The first was the unreliable nature of the HIV test, which is amply documented. One speaker said he had been told he was positive, then negative, then positive, within a short space of time, which was not unusual.
The second factor was the appalling pressure from the medical profession to go down the conventional drugs route. Not only those speakers, but others also with HIV or AIDS, have told of being harassed and intimidated by their doctors. That has added greatly to the stress of living with a serious diagnosis. Almost worse, it has driven many such people right out of the system. Most of those who think differently about treatment now will not go near doctors or hospitals if they can possibly avoid it. That pressure is not only counter-productive in conventional medical terms, but
Adults can, I suppose, with difficulty, withstand such pressure. Children, it seems, cannot. I read with astonishment and disbelief this September about the four month-old daughter of an HIV-positive mother who was ordered by a court of law, against the parents' wishes, to undergo a test for the virus, with the strong implication that, if positive, she might be forced to take medication. I find that wholly objectionable in principle, even if it were not for the obvious care and intelligence of the parents; the non-specific nature of the test itself; the evidence of cases of young children who have sero-reverted to negative without any treatment; and the indications that I have already given that a non-drugs approach may have merit.
It is not difficult to find anecdotal evidence, from HIV agencies and in the press, of children born to HIV-diagnosed mothers who remain quite healthy in the absence of anti-HIV therapy. The judge in this case is reported as saying that the family went against "every piece of medical advice". Well, that is their right--I do it myself--even if the advice in question had been certain, unchanging, and demonstrably successful in outcome. Are all those who want to take away the mother's choice to breast-feed unaware that studies are divided on this issue, that adequate vitamin status probably enhances the protective effects of breast milk, and that a recent report in the Lancet suggests that exclusive breast-feeding is in fact the safer course?
I believe one of the principal steps the Government can take to help these children is to defend their and their parents' freedom of choice of treatment. After all, it is not as though 45 billion dollars of drugs-based research has yielded spectacular results. The Government, I think, should use their influence in the fields of health and social services to put a stop to the bullying of parents, and of older patients, who decide to take a different line of treatment. Doctors who say "If you don't take my treatment I have finished with you"--and, my Lords, this still happens--have no place in a civilised healthcare system.
The Government can do more. They can follow up the questions I raised two years ago and look seriously at the results of using non-conventional approaches, not just as palliative medicine, which is how they are chiefly regarded, but as a means not simply of "living with" HIV or AIDS, in the words of today's Question, but possibly of overcoming them as well. This might involve, by way of a start, allocating resources to establish a voluntary data-base of children born to HIV-diagnosed mothers who are thriving with no antiviral therapy, or with alternative therapies.
In summary, I would suggest--and the Minister may like to consider this and not necessarily reply tonight--that government have a research and information role which could serve to counterbalance the aggressive one-sidedness of current advice about HIV and AIDS. They might be surprised by what this could do for children "living with" these conditions.
Baroness Rendell of Babergh: My Lords, I begin by thanking my noble friend Lady Massey for asking this Question and for speaking with such clarity on a difficult and distressing subject. The issue she has raised is one which concerns us all but which many people, unlikely to be personally affected by it, increasingly choose to ignore.
Once erroneously supposed to be a virus peculiar to homosexuals or transmitted through the use of infected hypodermic needles, HIV/AIDS is now spreading most rapidly through the heterosexual population. Where there are heterosexual couples, there will be children. According to BBC Radio 4's "You and Yours" programme last Wednesday, infected people are having children without telling a partner that they are HIV positive. In other words, they are risking giving birth to a child infected with HIV.
It may not have fallen to the lot of many of your Lordships who are not health professionals to have been closely associated with an AIDS sufferer. It has to mine. A very close friend of mine was infected with the virus in San Francisco 15 years ago. He was HIV positive for a while. Full-blown AIDS developed, and he died in 1989.
The AIDS sufferer exhibits the symptoms of a number of distressing diseases; indeed, he or she seems to ape them. They include respiratory and digestive problems, skin trouble, thrush and mouth ulcers, rheumatism and arthritis, weakness and emaciation, among others. There is nothing sinister about that. It is due, of course, to the damaged and ultimately destroyed immune system. Then there is the disfiguring Kaposi's sarcoma, where the sufferer's skin is stained with naevus-like patches.
We must ask ourselves how we would behave towards friends and loved ones if we knew that we had an incurable disease which would most likely end in pneumonia. I do not refer to the pneumonia that would have been the death of our grandparents but which these days we have come to accept will respond to treatment, but the AIDS-related pneumonia which recurs and which, finally, because drugs can no longer help, kills without hope. Children witness this and some know that a similar fate very likely awaits them.
The situation for children with a parent who is an HIV/AIDS sufferer or even two parents with the condition is particularly painful. That is so not only because of the home situation and the demands on the child to perform tasks for which he or she is unfitted, such as nursing, cooking, cleaning and possibly the care of younger siblings, but also because of the fear of HIV/AIDS generally in the population and the superstitions, myths and horror stories which surround it.
The belief is still prevalent that one has only to touch or be in the same room as a victim with HIV/AIDS to risk infection. AIDS is still looked upon by some as divine punishment for being homosexual. Many are convinced that AIDS is a homosexual disease. In this area, the media--particularly television--are unhelpful. Hospital sitcoms regularly show some member of the public or medical staff splashed with an AIDS sufferer's blood. Subsequent scenes of horror and fear are all featured with the maximum sensation. That is the climate in which the children of the HIV/AIDS victim grow up and have to handle their lives.
AIDS is transmitted by sharing injection equipment, by a woman passing the virus on to her baby before or during birth and, as we have heard from several noble Lords, by breast-feeding, and through unprotected sex. Much as they were in the 19th century, sexually transmitted diseases are looked upon by many as disgraceful. Of course, that means that sufferers and those close to them feel unable to talk to anyone about the condition.
Cancer used to be the unmentionable affliction-- something one did not talk about. Now it is common (it happened in the case of my friend) after death for the relatives to say that the AIDS victim died of cancer. Children often tell their contemporaries that their parent has cancer rather than the virus. They fear being shunned or cruelly insulted unless they lie. Cancer has become the life-threatening disease which it is fashionable to discuss freely. People declare openly if they are suffering from it, have received treatment or
Perhaps I may ask the Minister what steps Her Majesty's Government are taking to lessen the stigma still attached to the virus. What help is given to children obliged to care for HIV/AIDS patients? Do children know that they can consult the National AIDS Helpline and that help is available in Punjabi, Bengali, Hindi, Urdu, Gujerati, Cantonese and Arabic, as well as English; and that there is also a service for those with hearing difficulties? When such children miss school, is that known to the authorities as a cause for concern? Do they routinely receive suitable and sympathetic counselling? Are they educated in the true significance of HIV/AIDS free from the superstitions which surround it? Are children infected with HIV told of their chances of developing AIDS or not, as the case may be? Is their reaction carefully monitored? Are schools encouraged to discuss that subject with students? How do schools deal with the problem of children's ignorance or knowledge of HIV and AIDS.
According to the programme I mentioned earlier, most counselling organisations are geared to the gay community and few have a scheme designed for heterosexual people. The provision of support is haphazard and HIV/AIDS charity support funds are directed away from research and the direct combating of the virus.
The United Kingdom is a low prevalence country for HIV compared with other countries. In general, Europe is a low prevalence area. Nevertheless, the World Health Organisation estimates that 30,000 adults and children in western Europe were newly infected with HIV in the month of December 1999; 9,600 adults and children in the same area died from HIV/AIDS during the year.
It seems that there has been no national campaign to alert people to the risks and dangers of HIV/AIDS since the so-called iceberg advertisements of the late 1980s. Will the Minister tell the House whether Her Majesty's Government have any plans to institute a new campaign with heterosexuals and their children in mind? As my noble friend Lord Winston mentioned, is there not a case for a more general routine screening programme for HIV?
Lord Clement-Jones: My Lords, I join with other noble Lords in thanking the noble Baroness, Lady Massey, for raising this important issue today and for her very moving speech in opening the debate. I am very pleased to see the Minister here today as I know that he has had an extremely busy fortnight dealing with other Bills. Therefore, it is a particular pleasure see that he is taking part in this debate today.
As a member of the all-party group on AIDS and a former council member of London Lighthouse, I believe that I understand the difficulties of adults living with HIV/AIDS. But children are a dimension even larger than that, as the noble Baroness, Lady
Today has provided us with an opportunity to highlight just how widespread is the problem and, indeed, what needs to be done. The international figures are quite horrific. I know that today's debate is essentially domestic but, as the noble Baroness, Lady Massey, made clear, they are of major importance. The noble Lord, Lord Winston, demonstrated that in a very telling speech. We should put matters in an international context. This year in the order of 570,000 children under the age of 15 have been newly infected with HIV. There are 1.2 million such children now living with HIV/AIDS and this year there have been around 470,000 deaths of such children from AIDS.
If we can develop ways of coping in this country, perhaps we can use that experience in order to help developing countries with their problems, which are of an even greater dimension. But even though our problems are not quite so large, one in 500 births in London now is to HIV-infected women. Every single one of those children with HIV/AIDS is an innocent victim who must be treated, cherished and helped to live as full a life as possible.
Some of the individual stories of the lives of families with children who are HIV positive are quite harrowing. Many, indeed it may be most, families must keep their plight secret for fear of stigmatisation. Many children with HIV themselves see their parents and siblings die of AIDS as they grow up. In the meantime, they act as carers for other infected members of their family. Those children are at risk, as has been illustrated during the debate, of suffering from a great deal of stress and isolation.
There was a very moving article in the Independent in August this year which talks of two 15 year-old girls, Bella and Lizzie, who were born HIV positive. Lizzie was told only recently at the age of 14. Bella was told at the age of 9. Both young women have to keep their condition secret from their friends. For both, despite new treatments, the future is cloudy. They wonder whether they will ever be married and have children. Bella takes 105 different pills every single week. Previously, she had been in and out of hospital with various complications, but until she was told, she had no idea why.
An article in the Observer at the same time talked of Elizabeth who, like Lizzie, was told when she was 14 years old. No one previously thought that those children would survive. Now we must make sure that they have a future. Those are just individual case histories, but that was confirmed by extremely well-done research carried out by the National AIDS Trust last year, which has been referred to by several noble Lords.
In terms of prevention, we welcome the Government's adoption of targets for voluntary screening of 80 per cent by 2003 for HIV/AIDS during pregnancy, which was adopted in August this year. But will there be adequate counselling for those tested HIV positive? We have a long way to go from the
I also welcome the recently announced campaign to encourage more mothers to take the test to be carried out in conjunction with the Royal College of Midwives. But a substantial proportion of those mothers come from developing countries; have English as a second language; or are asylum seekers. As the noble Baroness, Lady Rendell, made clear, communication needs to be available in the appropriate language.
In terms of ensuring that children born of mothers who are HIV positive are not themselves infected, I wonder whether we should not take a leaf out of Eire's book. It is almost four years since an HIV-positive child was born in Eire. Should we not study the experience there?
As regards treatments, there is much food for thought in what the noble Earl, Lord Baldwin, has said. But the case, as for conventional medicine, needs to be demonstrated scientifically. In the meantime, I believe that families need to have access to the best possible information on effective treatments. I do not believe that anyone is talking of compulsory treatment. But there are difficulties when children simply do not understand what condition they have.
As to support services for families, the National AIDS Trust report last year made very clear what was needed and, as the noble Baroness, Lady Massey, made clear, better understanding and co-ordination will go an extremely long way towards improving those services. The beacons of treatment mentioned by the noble Baroness, Lady Masham, such as Mildmay hospital, are what we should all like to see for those children.
I want to end today by paying tribute to those voluntary organisations working in this field. They are a great source of help and comfort to those children and they need our strong support and commitment.
The noble Lord, Lord Winston, made it clear that we lag behind Europe. In addition, as the noble Baroness, Lady Rendell, made clear, this issue is not simply related to the health service, but crosses government departments. The education services need
Lord McColl of Dulwich: My Lords, I thank the noble Baroness, Lady Massey of Darwen, for drawing our attention to this terrible problem. At the outset I declare my interest in the subject. I am Chairman of the Board of Governors of the Mildmay Hospital in Hackney, to which the noble Baroness, Lady Masham, has kindly made reference.
In the mid-1980s we opened as the first hospice for people dying of AIDS in Europe. At the outset we decided to try our best to avoid the mistake of failing to care for the carers. We remembered the situation of one hospital which had the excellent idea of providing a hostel for people undergoing outpatient radiotherapy. They also wisely provided a warden to look after the radiotherapy patients. Of course, he found himself involved with the patients, discussing their fears, their worries and their bad experiences. Unfortunately, the authorities failed to appreciate that it was necessary to look after the warden. Within a few months the strain took its toll and he had a nervous breakdown. At the Mildmay we have taken particular care to care for the carers with trained counsellors and ministers from various local churches. Even so, it proved an uphill task.
So far, I have confined my remarks to talking about caring for the professional carers. Nurses, doctors, cleaners and administrators are all involved. However, the debate is about caring not for the professional carers but for the children who do the caring. As most speakers have emphasised, one of the most important aspects that has not been addressed is the issue of children whose parents have AIDS, but the children are not infected. Those children may not be infected, but they are very much affected. At the Mildmay Hospital our experience is that when the mother becomes sick often the other partner disappears which results in some affected children being the young carers to their mother and to their siblings.
Such children are presenting to us with serious emotional problems. In most cases nothing is done for them because they are not acknowledged as children with special needs. Clearly, they have tremendous unmet needs. The noble Baroness, Lady Masham, mentioned the charity called Body and Soul which was founded three years ago. It does a great job trying to help some of the children.
The majority of children who live with HIV and AIDS are the children of parents who have existing problems. In the case of maternal transmission the mother may be an immigrant or a drug user or an ex-drug user. On reaching puberty the children need to be advised about the transmission of the infection. That marks these children as different. The parents and teenagers fear that people will find out about their HIV status. The fear of breaches of confidentiality is overwhelming for parents and children because such a stigma and so much prejudice exist in this country to
On the treatment of the children, there are problems concerning compliance, as the noble Lord, Lord Clement-Jones, has mentioned. Often they have to take a great number of drugs of different varieties, some before meals and some after meals and it all becomes rather complicated. The mother herself may be HIV positive and may have been traumatised through feelings of guilt at having infected her child.
At Mildmay we have a purpose-built nursery for children under the age of eight who have HIV positive parents and for children who are infected. The nursery takes about 30 children every day and there is a large waiting list. Currently, it is 50 per cent funded by voluntary donations and the rest of the funding is from the health authority, but that funding is considered to be at risk as the health authority says that social services should look after those children who are not actually infected. However, they are certainly affected and sometimes they are the only carers of their sick mother and the other children.
Children in the United Kingdom have access to prophylaxis and treatment as required, but we need to recognise that those children are born not only with a physical condition which affects their lives even if they receive treatment, but with a condition that is also socially disabling because of the continuing prejudice related to HIV. Although such children may take anti-retroviral combination therapies, their lives are still affected because they tire easily, cannot keep up with their peers and succumb to all kinds of intermittent infections. Noble Lords will appreciate the enormous problems that such children face and the great strain under which the staff at the Mildmay work, ably led by Dr Jeanette Meadway.
As we were treating a large number of Ugandan women and children, the centre at Mildmay attracted the attention of President Museveni of Uganda. On seeing the place he asked us if we would build a similar centre in Uganda. Of course, we readily agreed, not considering from where the money would come. Under the leadership of the noble Baroness, Lady Chalker, the ODA Minister in the previous government, we were able to build a splendid, purpose-built outpatient and teaching centre. That was completed last year at a cost of £3 million. The present Minister of DfID, Clare Short, has continued to give magnificent and robust support to that Ugandan project. It is run by a former matron--a good old-fashioned matron--Ruth Sims, and medical directors, Dr Veronica Moss and Dr Catherine Sozi of Uganda. That splendid team battles away all hours of the night and day. We have to take great care of the carers themselves because of the emotional strain.
In September I visited the children's clinic in Uganda and my experiences were much the same as those of the noble Lord, Lord Winston. There were 30 children, all with AIDS, many of them dying and all
The new drugs which are partially effective against AIDS cannot, of course, be afforded, but at least most of the complications can be treated--tuberculosis, malaria, shingles and scabies. That greatly improves the quality of what little life is left. All the children are given a large meal every day and there is a special play centre for them. The doctors, nurses and administrators play with the children and read to them. I found it a most moving scene. All have lost their parents and they are cared for by relatives, who are often reluctant to look after them, or by other children.
Although the problems in Uganda are much greater than they are here, the stigma of AIDS there is much less than it is in London. As noble Lords know, some African countries may lose one third of their population through AIDS. So although our problem here is much less, it is totally unacceptable that there is so little provision for the child carers who are looking after brothers, sisters and parents.
Will the Government issue clear guidelines to health authorities and social services so that they can work together to help those children, both affected and infected? And perhaps I can reinforce the point made by the noble Baroness, Lady Rendell; that is, we need to repeat the successful public health campaign of a few years ago and alert the population to the fact that the AIDS problem still exists and the dangers are as great as ever.
Lord Hunt of Kings Heath: My Lords, I begin by thanking my noble friend Lady Massey for raising this extremely important issue of children and HIV, and thank all speakers for their positive and moving contributions to the debate. I agree with the noble Baroness, Lady Masham, that this is a time of giving and sharing. It is also a timely debate because the Government are currently developing an HIV/AIDS strategy.
The Question asked tonight offers an opportunity to raise issues the House would like the proposed strategy to address and for me to attempt to give some answers. I thank my noble friend for drawing to my attention the booklet Why Me? that she launched on 29th November. I hope that we can arrange for all noble Lords who have spoken to be supplied with a copy. It sets out the testimony of children who are either infected or affected by HIV in order to raise awareness.
My noble friend talked of issues for young people in relation to fostering and adoption, some of the emotional stress with which they have to cope through not being provided with information that is useful to them, and also the stigma involved. I learnt more from
As the noble Lord, Lord Clement-Jones, said, the number of children involved may be small but the burden they bear is great. The HIV/AIDS strategy thereby provides an opportunity for the Government to think holistically in relation to how we can help them. If I bat some of the questions asked tonight into the strategy, that is not because I am running away from giving an answer; it is simply that I shall make sure that this debate is drawn to the attention of officials working on the strategy and that the constructive points we heard tonight are considered with care.
It may be helpful if I read out some of the headings to be covered by the strategy. It will begin by looking at the national picture on HIV/AIDS; what data are available; the levels of reporting of information and public access to it. It is important to have an effective information base line on which to work in the future. We will be looking at tailoring prevention efforts to the different needs of people in different population groups. Also, we will be addressing issues of social exclusion--mentioned by a number of noble Lords tonight--which prevent people coming forward for testing and accessing services.
We will look at treatment and care in relation to the standards that are used and can be reasonably expected regardless of how the services are delivered. I shall pick up the issue of counselling in that respect raised by the noble Lord, Lord Clement-Jones. We will also look at health authorities' and local authorities' legal duties to co-operate and how the new joint finance arrangements can be used to deliver seamless prevention, treatment, care and social support services. In that regard, I shall examine the issues raised by the noble Lord, Lord McColl, in relation to the problems he identified in terms of health and local authority support arrangements for centres like the Mildmay. If he cares to send me information we shall certainly feed that in.
We shall look also at how we engage and empower the voluntary sector and at the performance management of the NHS to ensure that its services are effective, adequate and meet the wishes and needs of users. We shall be looking particularly at the role of users in service development. That is crucial if we are to obtain the right kind of service with the right kind of support and effective counselling. That is so important. We shall look also at the implications of the work of other government departments; for instance, the Home Office policy on HIV positive prisoners and the DfEE in relation to education--a point to which I shall turn in a moment.
Within all of that, as my noble friend Lady Rendell suggested, we will have to focus on the needs of children as a group. I can assure noble Lords that the messages that have been shouted loud and clear tonight will be taken on board. One of the most important points--touched on by the noble Baroness, Lady Masham, and my noble friend Lady Rendell--
Work done by the HEA targets young people from 16 to 25 years. It includes information resources on safer sex, including the benefits of condoms, advice that should be sought if a young person thinks they might have been at risk of having unsafe sex and overcoming peer pressure to have sex. Campaigns have also involved work with young people's magazines, national radio and the National Union of Students. Earlier this year the HEA launched its safer sex website and a new safer sex resource aimed at holidaymakers. However, I take the point raised by a number of noble Lords regarding whether or not the overall effect is sufficient in terms of current public perception of the risks. That is something I expect the strategy to look at.
Back to Table of Contents
Lords Hansard Home Page