MP: In the early 1980’s, when Aids, as it was known then, was first brought to the attention of the world, the nursing organisation I worked for recognised the impact that it would have, not only on the general public, but specifically the challenges it would bring for our nurse members, in helping to prevent the spread of the disease as well as to care for those affected by it.

An Aids adviser was appointed, based in our London office, and his principal role was to give relevant help and advice to not only nurses and allied health professionals but also to members of the general public such as the police, social services and teachers. Because most of our information about Aids came from articulate groups of gay men, the advice on prevention and care was, initially, directed at this community. However, because I was living and working in Scotland we were aware that the community most affected by the disease here were the injecting drug users. I approached my colleague, who had already realised that our problem was different, and we worked together on producing information and guidelines aimed at helping our nurse members working with this difficult group of people.

It was recognised, at that time, that there was a need for Scotland to have its own adviser and I agreed to take on that role.

MP: Since I retired 18 months ago I have had no specific role in the HIV/AIDS issue. However I was asked to work for three different Charitable organisations as a Board member. This involves giving advice on nursing and health related concerns which may affect the work of the Charity, and this, of course, includes HIV/AIDS.

MP: There are so many stories I could tell you about HIV/AIDS and how it has affected me that I could write a book (well, almost!) but perhaps one story helps to highlight the indomitable spirit of those helping to fight for resources to prevent the onset and spread of the disease, as well as to care for those affected with it.

In the late 1980’s I attended an International Aids Conference for nurses, in Dublin, Ireland. This conference was attended by delegates from all over the world and included health professionals, representatives from many different churches, social workers, press and media, politicians and many other groups in society as well as some delegates living with Aids themselves.

One of the presentations to the conference was made by two nuns who ran a hospital in one of the sub Saharan African countries. In those days (and sadly still) there was very little money for spending on health, we were told that it was less than a shilling a year for each person. The Aids problem had reached epidemic proportions and the nuns told us of the thousands of affected people attending their hospitals and Bush clinics. The problem was made worse by the fact that more than 75% of their staff were also affected and that these people were not only looking after the sick in the hospital but also often had family ill at home whom they also cared for, with little or no medication or basic necessities. We were told of midwives delivering babies of HIV positive mothers with not even a pair of gloves to wear for protection. It certainly made those of us from the more affluent west feel very humble. However, in spite of all this sadness the nuns spoke of the close relationship between themselves, their staff and patients and the courage and determination of these people to care for each other.

MP: The “Human Immunodeficiency Virus (HIV) cannot survive outside the human body as it dies in the air and is also easily destroyed by soap or detergents. The virus is passed on from person to person by unprotected sexual intercourse (vaginal and anal) through semen and vaginal fluid or by infected blood. The use of a needle to inject drugs which has already been used by someone who carries the virus is the most common cause of the virus in drug addicts. You can also catch the virus from contaminated blood transfusions but, thankfully, blood is now treated to ensure that the virus is not present.

Knowledge of how the virus is spread is vital to ensure that people understand and act responsibly. Men and women who have unprotected sex with many partners are at greatest risk of contracting the virus, but it only needs one infected person to pass it on.

Injecting drug users tend to be more difficult because of their chaotic lifestyle and overwhelming need to feed their habit, however, if they can be persuaded not to share needles with others and to use only clean needles each time they inject, there is less chance of them contracting the virus.

From this you can see that there is little point in talking about “at risk” groups as we are all potentially at risk. The only “safe” people are those who have been in a life long monogamous relationship and do not inject drugs.

MP: Scotland has probably developed a better understanding of the HIV/AIDS issue because we recognised the danger reasonably early on in the development of the disease and the British government were fairly quick to take action. It would be wrong of me to say that it was an easy process to get our politicians to act but compared to many other countries, particularly in Europe, we did not too badly.

Our government set up a huge public health education programme and it is fair to say that as Scotland is a relatively small country, with an even smaller population, we had the advantage of it being easier to target the disease. Gradually the public began to realise that it was a virus but, unfortunately, one that was, as yet, without a cure. The ignorance and prejudice that was found in the early days is still there but to a much lesser degree and we have large support networks for affected people.

However, we cannot be complacent as recent figures show that we have the largest teenage pregnancy rate in Europe, so the message is obviously not getting through to the young people of today. We are already talking of mounting another campaign to raise awareness of HIV as we now have a generation of young people who were not born at the time when it was at its worst.

MP: This is a difficult question to answer in the global context. I can remember in the early days of the disease, when the Centre for Disease Control in Atlanta, (USA) were trying to collect information on the spread of the disease worldwide, there were some countries, and I am not talking about the poorer nations, who denied that they had a problem with HIV/AIDS and did not produce any figures. It was clear that, politically, it was not acceptable to some nations to admit the presence of the disease in their country. About 10 years later one of those countries ended up with the highest number of people affected by the disease in Europe.

There is now a spread of the disease, reaching epidemic proportions, in Sub Saharan Africa. These are poor nations with no resources to fight and contain the virus so it has to be us, in the more affluent west, who fight on their behalf. Our governments need to give appropriate help to these people and can make a start by cancelling the third world debt and encouraging the giant drug companies to make their drugs available at a more reasonable cost.

I believe that the best thing that society/we can do is to challenge the fear and prejudice, which still exists, by targeting all politicians and demanding the release of sufficient resources to tackle the problem, and this means a big public education campaign as well as more practical help. Unfortunately , prejudice is not something we can legislate against, but the more people understand the disease the better chance we have of fighting it. Ultimately, the best thing society/we can do to be most effective, is not to allow it to spread.

MP: Globally, there have been many campaigns aimed at preventing the contraction and spread of HIV, some have been very successful, some not so. In the UK our government mounted a very powerful campaign in the early days of the virus but there were mixed reactions from the public. Some clearly did not believe that it was so serious, (we called this the “head in the sand” syndrome) and others who were genuinely afraid of the message they were being given. However, this fear also attracted some who chose to use it as a form of “religious” retribution, which certainly didn’t help to encourage sympathy and understanding for the affected people. However, as our knowledge and treatment of the disease improved the campaigns became less alarmist and more educational and the good results became more obvious. For example : Free needle exchange centres, for those addicts who injected drugs, used to be targeted by the police who arrested the addict and confiscated their clean needles and syringes. We discussed this with senior police officers and managed to persuade the police that this was one very effective way of preventing the spread of the disease. Following this, we were then asked if we would talk to groups of policemen and explain a little about how the disease was spread and how to take sensible hygiene precautions such as wearing latex gloves, when dealing with anyone who has an open wound, in case they themselves have a cut which might allow the blood to enter.

The clergy, of all denominations, found it difficult to understand also but realised, some reluctantly, that as long as people were going to have sex outside a monogamous relationship that it was better that they used a condom. Unfortunately, we have been almost too successful. As the disease has become less noticeable and affected people are living longer with the better drug regimes, we have a new generation of people growing up who are too young to remember the bad days when death from AIDS was a constant reminder in the press and on TV. We are once again seeing a rise in the number of people with the virus. It is time for more campaigning.

MP: In the early days of the virus my colleague in London was HIV adviser to the Department of Health which had responsibility for all government decisions on health, including campaigns. Our organisation was one of a number of groups and individuals who provided the advice on how to care for patients with the virus and also nurses infected with HIV. Policies and protocols were drawn up and circulated throughout the four countries which make up the United Kingdom.

The Scottish Parliament was re-created in 1997 (300 years after our last one was disbanded!) and in the three years until my retirement in 2000 I and the organisation I worked for, was responsible for providing advice and information to our new Scottish Health Minister and other relevant politicians on many matters relating to Scotland’s health and the nursing profession. We already had well established procedures and protocols for dealing with HIV/AIDS but we were just beginning to realise, at that time, that the infection rates were rising again and our health department were looking at what further action would be necessary.

MP: The nurse is well placed to contribute to the fight against HIV/AIDS. Ignorance is the biggest danger and the nurse’s best contribution is her/his knowledge and ability to ensure that the public have a clear and accurate understanding of the disease. For example, many more viruses are much easier to catch as they tend to be airborne. HIV is very difficult to catch and, contrary to popular myth, you can’t catch it by kissing someone or using the knives and forks of an infected person. The nurse can ensure that colleagues, particularly those with no formal training, fully understand this. Often the ignorance of others can cause distress to the person with the virus, and their family and friends so it is vitally important that the nurse does as much as she/he can to prevent this.

The nurse can also ensure that her/his employer has appropriate guidelines and protocols in place for the staff to follow, then everyone is clear as to what is expected of them.

Gone are the days when the person with HIV/AIDS was nursed in isolation from everyone else and all staff and visitors had to wear masks and gowns. It is more important that we make sure that we do not carry any infection to the infected person as the disease destroys the body’s natural immunity so in the later stages of the illness we could cause the patient more harm, even from something as simple as the common cold.

MP: In my opinion the best way forward in this fight should be the same for everyone, not just nursing. We all need to stamp out prejudice and the many myths surrounding HIV but unfortunately, this is easier said than done. Nurses as professionals are required to care for all of their patients, regardless of any personal feelings. In the past I was occasionally asked by nurses if they had to look after a patient suffering from HIV or AIDS. Sometimes this was from a lack of knowledge and I was able to reassure them but sometimes it was because they didn’t approve of the individual’s lifestyle. I had to explain that we, as professionals, were bound by our code of conduct to give whatever care was required, to every patient, and that we could not pick and choose who we would care for. Any nurse refusing to do so had two options, either to resign from their post or risk losing their license to practice.

Worldwide, our patients come from many different races and religions, each with their own customs, taboos and politics, all we as nurses can do is continue to give the best care and advice, without prejudice, thus setting a good example to all.

MP: There is no special protection required when caring for patients with the virus that you wouldn’t take for any patient. For example when taking blood or dressing an open wound, gloves are worn always in this situation for all patients, or when the patient’s immune system is poor and we need to protect them from picking up an infection from us. All hospitals and clinics should have infection control procedures in place which involve guidelines on universal precautions for use at all times in all situations. If all nursing staff maintain good clinical skills then they have little cause to worry.

It is very rare for a nurse to catch HIV from a patient, there are only a handful of cases to date and nearly all have been as a result of poor clinical practice, the most common of which is piercing their skin with an infected needle when trying to re-sheath the needle after administering an injection. Most hospitals now ban this practise and all needles should now be placed directly into a special container which is sent for incineration when full.

As I stated earlier, there is no special protection needed when caring for HIV/AIDS patients, basic precautions are all that are required and they are for use when dealing with any patient, after all, we do not know the HIV status of most of our patients therefore must treat all as if they were HIV positive.

MP: Nurses have a responsibility to inform their employer of their HIV status, particularly if they work in areas where they may be at risk of passing on the virus, such as surgical or operating departments. Equally, the nurse may also be at risk of picking up infections in the later stages of their illness, which could be detrimental to their health. It is the responsibility of the employer to enable the nurse to continue working in areas where they are not a risk, either to the patients or themselves.

MP: People who are HIV positive spend relatively little time in hospital these days as the drug therapies are so much better and more effective. It is quite usual nowadays for them to reach almost their normal lifespan.

In Scotland and, indeed, throughout the rest of the UK the support for these patients at home is very good in most cities but not so good in the rural areas. It is really only in the final stages of the illness that help may be required. Community nursing staff will visit and give care in the home if it is required and there is specialist support available from nurses trained in the field of HIV/AIDS, although not in all areas.

The role of the nurse also includes moral/psychological support, for all their patients not just those who have the virus. It is always up to the patient to decide whether they wish this sort of support and often, if they have no family member or friend to provide this, they will rely on the nurse. However, most health authorities and organisations specialising in the support of people with HIV will provide the help of a trained counsellor. In this country we must not underestimate the help and support available from voluntary organisations and charities who specifically deal with HIV positive people, they are always there to help and do so much more than just fill the gaps that the statutory services cannot. Family and friends are very important as well as Ministers of religion, all should be working together as part of the team to ensure that the best care and support is available.

MP: Any patient requiring treatment of any kind, from any health professional, be it doctor, nurse, physiotherapist etc, is a partner in the process, so all potential treatments for their specific medical condition should be discussed in full with them. Once this is done and the patient has a full understanding of the issues, he should be able to make a decision as to the type of care he wishes, if he is still unclear then he can receive further help from a health professional. There are a wide variety of drugs and combination therapies available in the treatment of HIV and it is what suits this patient best that will be recommended.

The drugs are much more sophisticated these days so the side effects are not as bad as they used to be. However, it is in this area that the nurse can be most effective in helping to alleviate the more unpleasant side effects with appropriate care and treatment. In the final stages of full blown aids the patient can still be kept comfortable in his own home, if he wishes it, and he will receive 24 hour nursing care for as long as he requires it.

MP: Finally, thank you to all of you for taking the time and trouble to ask me all these questions. I hope that I have answered them to your satisfaction and that my language has not been too technical for you to understand. Please feel free to contact me if there is anything that you do not understand.

I have been privileged to be involved with the HIV/AIDS challenge from the beginning and to have seen the world wide efforts of some amazing people who have overcome some major obstacles, such as the researchers whose ground breaking work, although not producing a cure (yet) have produced drugs which are effective in prolonging the lives of those affected, the millions of dedicated people who have spent their lives helping and caring for those affected by the virus and lastly, but most importantly, those living with Aids.

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