The Truth about AIDS - Appendix: Setting up community care teams

---------------------------
Home
Site Intro (Movie) Mailing List - News
---------------------------
Human Cloning
Future of Banking
Digital Future
Health and Ethics
Gene Technology
---------------------------
Dr Patrick Dixon Bio
Lectures
Keynote Speakers
Conference Events
---------------------------
Web Cams
---------------------------
5.5 Million hits/12 mths
Dixon News / Media
Global Change
Help with Videos
12 Dr Dixon Books
Global Trends
----------------------------
Corporate Governance
Real Success
Motivation Matters
Future of Marketing
Virtual Office
Investor Confidence
Leadership Styles
Terrorism
----------------------------
Trends Analysis by Dr Patrick Dixon Futurist

Recent Video / Articles by Dr Patrick Dixon ---- 24 million requests in 12 months ----- 10 million unique visitors

appendix

b Setting up Community Care

1.´Church backing 2.´Communication with others 3.´Clarity about motives 4.´Working together 5.´Partnership and parallel programmes are both valid 6.´A need to ask whose needs we were meeting 7.´We needed to be sure a specialist team was justified 8. We needed to be clear why we were expecting people to 9. Grants and equipment loans have been important 10.´We need to listen to those who are ill 11.´We have needed to be ready for opposition 12.´Defining service limits 13. Making it easy to get in contact 14.´Training people to turn up on time 15.´Teaching people about servanthood 16.´Taking care about image 17.´Investing in volunteers
Selection Volunteers are as important as paid staff Sensitive questions Training and sending Support Communication The sorts of things volunteers do Volunteers cost money

CHAPTERS: Introduction 1 The Extent of the Nightmare 2 What's so Special about a Virus? 3 When Cells Start to Die 4 How People Become Infected 5 Questions People Ask 6 Condoms Are Unsafe 7 Moral Dilemas 8 Wrath or Reaping? 9 Some Life and Death Issues 10 When Church Members Need Help 11 Others Need Help Too 12 Saving Lives 13 Needle and Condom Distribution? 14 Special Issues in Poorer Nations 15 A Ten Point Plan for the Government 16 A Global Christian Challenge Appendix B Appendix C Appendix D

Note: This chapter of The Truth about AIDS by Dr Patrick Dixon is the original text as published by Kingsway in 1994 and may be reproduced with acknowledgment. Search this book.

This brief outline is a summary of some of the lessons learned by ACET home care teams in various places, but particularly drawing on the experience of the UK. Many of the principles are important in different situations, but all need adapting to one degree or another to each situation, particularly in developing countries. This cannot in any sense be regarded as a blueprint for success. Clearly the best resource of all is likely to be ongoing personal contact with those who have experience of setting up and running similar projects locally.

In whatever country ACET has operated there have been a number of general principles found to be helpful. Some of these apply not only to community care, but also to prevention or training:

1.´Church backing (return to index)

In most countries we have found the first move has come from national believers. This is certainly the case in the UK, where in many towns and cities people came to us with a desire to respond practically to AIDS.

In Uganda the first visit took place as a result of an invitation by a particular church to help them in the fight against AIDS. Through that contact, meeting many other leaders and returning a second time with the international agency TEAR Fund, a series of local initiatives was begun, working alongside local churches in an equipping and facilitating role.

Each country is different however. In Romania, when the communist regime fell and borders opened, the churches were overwhelmed by the immediate needs and the problem of adjusting to freedom after severe persecution. There was little creative energy left to consider starting AIDS projects, yet HIV education was necessary in churches as in the rest of the country.

ACET was approached by the Romanian government and UNICEF to help as an international agency. While ACET staff in Romania were members of the Romanian churches, and while the Romanian Evangelical Alliance endorsed the work, it was left to ACET to get on with it. Now the emphasis is beginning to change, with hopefully an increasing sense of ownership by local Christians.

We have found that in general the greater the church backing, the stronger the programme is likely to be. However, the backing ideally needs to be across a number of different church groupings, or the work may be hindered by sectarian interests.

We might ask if local leaders share and own a common vision. When starting a new home care service in a town or city in the UK we have been particularly concerned about local support for staff and volunteers. Becoming deeply involved in the lives of those who are dying with AIDS can be very costly and painful.

It is always more traumatic to look after young people who are dying, and with AIDS most are young. While there is often a richness and a personal growing in those who are caring, there is always grief as the person dies. We have found that support is essential, practically and pastorally. It can be more difficult sometimes in a big city like London, than perhaps in a place like Brighton where the team is smaller and there is a greater sense of support from one or more larger churches.

2.´Communication with others (return to index)

Sometimes we have had to learn the hard way that people like to hear in advance of new ideas or projects rather than afterwards, or just the week before. Consultation and communication are very important.

3.´Clarity about motives (return to index)

We have needed to be clear about our motivation---to honour Jesus by working together, laying down the temptation to build an empire or to be sectarian. The alternative is isolation.

Because our motives are broader than our own personal work, we will want to work together if at all possible. Our prayer is for God's kingdom to come and for his will to be done across the whole town, the entire city, the region, the nation, the continent, the world, so we need to work<together.

4.´Working together (return to index)

Sometimes we have found our ability to work together has been hampered by incidentals. For example, in the London office there are many staff from differing church backgrounds. An act of corporate worship has sometimes created tensions because there are represented different styles and personalities of churches which together form the rich tapestry of church tradition and life.

When a project draws together churches locally there can also be other issues, such as church structure or recognition of leadership, which can make unity difficult. For example, in one country there is very limited recognition of the role of women in positions of responsibility. This has sometimes made the role of female trainers more difficult.

The two pillars of a Christian response, unconditional care and effective prevention, respecting and upholding the historic teachings of the church, are ones that the vast majority of those from different denominations can unite over. This has been one of the most exciting things about ACET's work since we started. Christians who could never work together in any other context are working happily side by side, discovering a new vitality and dynamism in the process.

5.´Partnership and parallel programmes are both valid
(return to index)

We have found that sometimes it is right to work separately---but in parallel, not in competition. There are good reasons for this when the nature of the work is distinct.

The Salvation Army and TEAR Fund (return to index)

The Salvation Army is a magnificent organisation second to none in pioneering compassionate care throughout the world, together with the proclamation of the gospel. The Army has a great number of AIDS initiatives and ACET enjoys a good working relationship with them. We may be in partnership over some joint projects in the future, yet the organisations will always be separate.

TEAR Fund is the fifth largest overseas development agency in the UK, with programme assistance in over 100 nations, working through churches. ACET is working in partnership with TEAR Fund in several different countries, joining expertise and resources to further God's work. Partnership allows us to help get the job done more quickly and more efficiently, and speaks of unity and co-operation.

Sometimes we have found that one area of activity can affect another adversely, so it has seemed wise to separate or to keep separate. An example could be a group of people within a care agency whose vision is primarily to lobby parliament on various issues. Campaigning can confuse and damage care. Better to encourage those who campaign to join a campaigning group.

6.´A need to ask whose needs we were meeting (return to index)

Another question we have had to ask is: Whose needs are we meeting? We needed to be brutally honest: our needs, those in the church, service planners', or those with AIDS and their carers? It is so easy to start a project feeling we have something to offer, rather than because there is proof of a real need.

From time to time people in the UK have written to us offering redundant church property which they hope will be useful for those with AIDS. Unfortunately so far the places have been in the wrong parts of the country or unsuitable for various reasons. Yet when it was suggested that the property be sold and the proceeds used to purchase a suitable property in the right area, the answer was always no.

Whose needs are we meeting? What are we creating? Are we just growing our own empires or are we primarily concerned to meet the needs of others? Often buildings have limits on use and disposal created by ancient trust deeds. This is an area the church needs to look at urgently.

In the UK we have a large surplus of underused or disused church buildings costing millions to maintain, while we have desperate needs for other kinds of buildings in other places---or even in the same areas. This is particularly true with church-planting initiatives such as Dawn 2000, which is hoping to establish 20,000 new churches by the year 2000 in the UK alone.

7.´We needed to be sure a specialist team was justified
(return to index)

We have had to get an accurate picture of what local needs are before progressing with service plans. So often I have heard people say that there must be a local problem so they are setting up a small programme to help---or they think ACET should do so. The trouble is that the size of the problem may be too small to justify a specialist AIDS team. For example our own research suggests there are few areas in the UK where new teams are needed at the moment.

8. We needed to be clear why we were expecting people to (return to index)

come to us for help

We have needed to ask a further question: Why should people come to us for help? People with AIDS are often extremely cautious about offers of assistance---one breach of confidentiality could result in loss of job and home within days. It could also result in intimidation, death threats, or even attempts at blackmail.

People who work in sex disease clinics, on hospital wards or in social services may feel they are taking a big risk with their own reputations in referring people to a Christian agency. How are we going to prove our credentials? People with AIDS often know each other well and are part of social networks, so good news and bad can travel very fast. People vote with their feet. We have found that if we have cared well for one or two, it is very likely that others will begin knocking at the door.

Overcoming doubts when first starting up can be hard and can take time. It has been helpful to form a larger network with a track record, although a service working well in one town, city or country has not always guaranteed acceptance in another.

9. Grants and equipment loans have been important
(return to index)

In the early days of ACET Home Care, we found the best way to win trust fast in a new area was to make available small hardship grants to help with things like heating bills, bedding and telephone installation. These things do not cost a lot, yet can be real lifesavers. They are also low-risk requests for the referrer. When a service is getting off the ground and is unproven we have found it is often easier for people to ask for grants than to ask for volunteers.

Grants and equipment loans speak louder than any words or literature about a commitment to people with HIV, and have been helpful in building relationships. Referrers or recipients have often come back and asked for additional help.

Telephones are lifelines (return to index)

We have found that telephones are very helpful when caring for people at home. If someone who is dying at home has no phone there are three problems. First, the person cannot call for help. Secondly, if there is a volunteer in the home and the situation deteriorates, the volunteer has to leave the home and go looking for a vacant phone box in working order, which is often difficult in a crisis. Thirdly, it is impossible for people to phone in, either as a routine check to see how the person is, or to communicate a change in plan.

In some countries such telephone access may be impossible or too costly, resulting in a need to visit more frequently. It is then even more important to try to place your office where the telephone exchange is reasonably reliable. This means that if someone has gone to enormous time and trouble to try and phone you then they are likely to get through.

Practical help louder than words (return to index)

Grants need to be set up carefully so that sufficient information is obtained without being intrusive, to ensure the person qualifies, ie they have serious HIV illness and practical needs which they cannot meet from their own finances.

We have found it essential to verify diagnosis, as it has not been unknown for people to pretend they have HIV or AIDS in order to claim benefits, or for other reasons including a desire for attention. Verification is difficult without risking breach of confidentiality. We developed a special two-part form with the diagnosis confirmed only on one section with a unique number on it. If the form is opened or lost in the post, confidentiality is still preserved.

10.´We need to listen to those who are ill (return to index)

We need to take every opportunity to listen to those who are ill with AIDS. People with HIV who are well also have important perspectives, but those who are most ill will have had the greatest insight into practical problems.

As we have seen, caring for the carers is a vital part of helping someone ill at home. If carers become exhausted and cannot manage any longer, then there may be a crisis. We have needed also to listen to what their needs are, since they also need our support.

Long before ACET starts in any new area, we begin by researching needs and talking to others already involved. This informal survey is vitally important. We have a flexible approach so that as the service evolves we continue to learn more about what we need to provide. The day we stop listening is the day the service will begin to die.

I cannot emphasise the listening aspect too much. As medical director I took particular time in the early days to ask the people we were caring for what they thought about the service. Did what we were offering match what we were actually providing? What should we be offering in addition?

Twice recently ACET has carried out a formal postal survey which was made anonymous so that answers could not be traced to individuals. The results have been essential for our own planning and service development, but also for communicating to those who fund us---what better way to convince people of the value of our service?

User groups can give misleading views of those dying
(return to index)

User groups with committee meetings and other forums can tend to provide a distorted view of the needs of those who are dying. This is because they are likely to be dominated by the voices of those who are least exhausted and ill. Yet it is precisely those who are least able to get out of bed and attend meetings whose views we most need to hear.

Of course if we had been providing a different kind of service, for example a drop-in counselling and advice centre, then a regular meeting of users would have been invaluable.

11.´We have needed to be ready for opposition (return to index)

Whenever we have begun to talk about a new service we have found there are reactions. Some have welcomed us if they also recognised the need and saw the beginnings of an excellent team. Others have been opposed if they thought we might be in competition with what they were already doing, or with their future plans.

Our surveys of unmet need have sometimes been incorrectly perceived as a criticism of what others have been doing. Surveys can cause big problems if they show that there is no effective service provision despite all the funds received to provide care.

In many towns and cities in industrialised nations we have to face the fact that when members of the gay community were ready and willing to get involved in supporting those with AIDS, the church was nowhere to be found. There has therefore been a natural suspicion at times of this new-found enthusiasm. Will it last? What is behind it? Do we want them? Will they get on with us? Do they understand us? Will they compete for funding? Will they wreck all we have set out to do?

Coping with different agendas (return to index)

While Christians are often accused of prejudice, it is also true that those who say they are opposed to prejudice are often very prejudiced themselves against Christians. In other words they may have a fixed view of what our service will be like, and that view may be very negative.

Some groups already in existence may have a hidden agenda. For example, an AIDS group that began as part of a local gay phoneline may well see part of its mission to fight anti-gay prejudice and to encourage acceptance of gay lifestyles as normal, including in schools.

These secondary aims may be seen to be vulnerable if a Christian group like ACET seems to be muscling in, especially if they find most of the support is drawn from churches that would be very traditional in their views on sexuality. They may suspect, rightly or wrongly, that just as they have a hidden agenda to promote gay rights and lifestyles, we may be wanting to promote Christian morals or to evangelise.

There is no easy way to overcome these things. The key is always relationships and discovering a common concern for those ill with AIDS. We hope and pray that when we meet representatives of other groups there is mutual liking and respect. Although there are areas where we would take a different approach, we can still be united in a common goal, which is to help provide the best possible support for those ill with HIV and AIDS.

12.´Defining service limits (return to index)

Limiting what is offered at first

In the mid-1980s a great flurry of secular AIDS projects were set up in the UK, many poorly researched and badly run. By 1988 there were over 300 separate initiatives, many of which have since collapsed. In contrast, ACET started in 1988 as a co-ordinated network of local initiatives, each well researched and well managed. As we have seen, ACET has grown rapidly in response to almost overwhelming demand.

One of the reasons for success (apart from the sovereign grace of God) is that after much prayer and careful research we felt it right to restrict severely what we were going to offer and where we were going to provide help. The alternative is to be drawn into many different areas with few resources or without specialist know-how.

It is so much better to say we will only be able to meet certain needs because of limited resources, and to state clearly what they are. We can always offer extra help if other needs arise. Much better to do it that way round than to promise more than we can reliably deliver, creating an image we cannot live up to and blowing away our reputation. Our service definitions describe the kind of support available, what area we are covering, and how ill someone has to be.

13. Making it easy to get in contact (return to index)

It has been important to make it as easy as possible for people to contact ACET services. Nothing is more frustrating than wanting to get in touch urgently and getting an answerphone or no answer at all. Message machines are a wonderful help to those receiving calls, but are no help for those phoning in who may be out themselves later, or may be using someone else's phone. Sick people can't wait. If we cannot receive the call quickly we could find the person we have been helping for months to stay at home is suddenly in hospital, because someone was worried, could not get through and took the person to hospital.

An ideal service provides a telephone number as an out-of-hours contact point, possibly using a radio paging system if available. Most people become ill and need help outside of the forty hours of a normal working week for the simple reason that a full week is 168 hours long, so a service that only answers the phone during office hours only provides 25% cover. A service where the phone is only answered for two out of five days a week is only covering one hour in ten.

In practice, however, twenty-four-hour access is very costly in time and effort, unless provided for a large number of people at home over a large area. A radio pager means the person on call does not need to sit by the phone. It also means that person can be contacted when out visiting someone else.

We have found it is perfectly in order to provide an out-of-hours telephone advisory service, backed by volunteers who can be asked to provide extra help if needed. Even in London, where we are covering up to 240 people with our on-call service twenty-four hours a day, it has been very unusual for the person on call to need to visit.

14.´Training people to turn up on time (return to index)

When someone ill with AIDS has only a week or two to live, he or she does not want to waste half a morning waiting for someone to turn up. As people become weaker, their world becomes smaller. The room or home becomes the world. Time takes on a new significance and things that would previously have appeared trivial can become overwhelmingly important.

If it takes you an hour to wash and dress and you want to be dressed for a visitor, you may begin to think about getting ready two hours before the person is due to arrive. As the hour approaches you may be sitting thinking about the visit---hopefully looking forward to it. If the person is ten minutes late you can easily become convinced that he has got lost or has forgotten. After an hour you may be feeling exhausted, having now been up for three hours. You may want to get back into bed again. The trouble is that getting back into bed, after making a drink and going to the toilet is probably going to take you another half an hour. And then the person arrives.

We emphasise in training that people should never be late by carelessness or thoughtlessness. If someone is made late by incident or accident, and the person with AIDS has a telephone, we try to phone immediately. It is better to be ten or fifteen minutes later still, but to arrive and find someone settled at the other end who has been able to use the time to do something else.

15.´Teaching people about servanthood (return to index)

When we go into a home we do so to provide an extra pair of hands or feet to the person who is ill. We go in on the person's own terms. When someone is very ill or vulnerable, it is easy to want to take over, to make decisions, move the furniture about, call the doctor or clean the kitchen. In all these things we need to be sensitive. For example, the person may genuinely prefer that we do not do the washing up because he or she is unable to face the thought that we need to do it.

Sometimes there is a time and a place for confronting a situation gently, if failure to do so is going to have grave consequences in the future. We were involved in caring for a mother recently with three young children. What was happening was so painful to her that she found it almost impossible to think about the future. We had to ask her to think about it and to make some decisions while she had the strength to do so. As a result, she was then more settled, and the children were later cared for as she wished.

It is our privilege to help. We need to be flexible. Someone's condition can change for the better or worse quite rapidly. The priorities of the person and his or her feelings about things can also change.

16.´Taking care about image (return to index)

The public perception of any service is important. We have needed to think about image. Promoting a new service has meant having a first-class piece of literature to hand out and to give to people after we have met them.

e have found it helpful to have something short and easy to read for people who are ill and those who care for them, and some kind of a brochure explaining in more depth who we are for those who want to know. In the church it is common to spend many hours praying and planning, and a lot of money on buildings or people, but very little of either when it comes to literature.

Credibility and relationships are important, so it has been helpful to list names of key supporters whose association has provided security for users and funders alike. Sometimes this has been difficult because the name of a particular person on the list has been attractive to church supporters while being controversial to other agencies, or the other way round. The answer has been a large list which is broadly based. The list has been quite separate from the management committee, trustees or board, all of whom share the same faith and values enabling us to maintain distinctives with unity.

17.´Investing in volunteers (return to index)

An organisation run or supported by volunteers should be just as professional and well-organised as a well-run government agency. Co-ordinating offers of help without chaos has required great skill, dedication and hard work. We have not always managed it.

Selection (return to index)

Careful selection of volunteer workers has been essential. In the UK we have found a detailed questionnaire, given to all enquirers, to be helpful. What motivates them? Seeking to work out problems of their own? Guilt? Confused sexuality? Homophobia? Recent unresolved grief? Do they think they might be infected themselves? If so, are they going to be able to cope when seeing people with AIDS die? What are they hoping to achieve? What will they find most rewarding? What will they find most difficult? Do they have adequate support at home or will partners and friends be antagonistic? Is there any church support? Does the volunteer have a church commitment?

Someone once said to me that all she wanted to do was to `get onto an AIDS ward and tell them all about Jesus'. The trouble is, if she had found her way onto a volunteer programme (as she might have if selection procedures were sloppy), in five minutes she could have destroyed five years of goodwill, making it almost impossible for any Christian organisation to continue working in that area. In many countries people are sensitive, and rightly so, to someone coming in and `Bible-bashing'. It only takes one insensitive, over-zealous person to damage a whole organisation. There is a right time and a right place.

The important thing is to be a servant. If someone asks us why we are doing what we are doing, there may well be the opportunity to share the hope that we have. However, we would be crazy if we thought a medical agency was going to refer people with AIDS to us for help if we abuse that position of trust by preaching or moralising. We would destroy the credibility of the service. The behaviour of volunteers should be just as professional as hospital staff.

References from employers, ministers or church leaders are important. All these form the basis of a preliminary interview. We always delay a final decision on accepting a volunteer until after they have completed training. Our hope is that those who emerge as unsuitable during training will gradually recognise this without us having to reject them. Some people are unsuited to visiting those who are very ill. It is helpful for them to have the chance to come to this conclusion themselves. Even if they are not able to help as home care volunteers, they will often be well placed to help in other ways as a result of being trained.

It can be hurtful and distressing to someone to find they have not been accepted. It is vitally important that we are clear with people from the start about how selection and training is carried out so that there are no misunderstandings later. Sometimes people ask why they have been turned down. Our policy has always been not to disclose the reasons, as this may in fact give more offence---nor do we usually give reasons why job applications have been unsuccessful. We have had to have a standard policy for all.

Volunteers are as important as paid staff (return to index)

Somehow there is the notion that because someone is offering free time without asking for a salary, it is rude and offensive to turn the offer down. However, we have always taken the view that a volunteer in the home has a role at least as important as a paid member of staff. Therefore we do not just want to increase numbers of volunteers; we are also looking for the very best and most suitable people we can find.

Whether or not to accept someone can be a hard decision. Clearly things may have emerged during small group training which may raise a question-mark. For example, if the person has recently been bereaved, there is a danger that he or she will find it hard to cope when confronted so soon by others who are dying.

A volunteer who is ill may also find it hard to cope. I am not saying that people who are ill with cancer, AIDS or other conditions should be turned down. I am suggesting that it may be unhelpful to send in a volunteer who in fact may need support later on from the very person they are meant to be helping. We always need to remember whose needs we are supposed to be meeting.

We also have to think about the psychological effect on someone who is visiting day after day a person who is now dying of the same illness they themselves have. In a cancer hospice we would, I think, take great care before appointing a new ward sister or doctor with terminal cancer. I expect we would suggest he or she found a job in a specialty that did not face them with their own disease every day. Clearly each person needs to be considered individually, but we do need to think these things through.

Sensitive questions (return to index)

Many AIDS organisations in different countries have faced near collapse as a result of selectively recruiting staff and volunteers with HIV or AIDS. We need to take care if we want to have an organisation which is still going to be able to care effectively in the future. Some ask if it is our policy to ask about HIV infection or sexual orientation at interview. We ask about neither of these. HIV is a personal and confidential matter. Sexual orientation is irrelevant in giving care, or in living the Christian life. Lifestyle, however, can be an issue, depending on the situation.

There may be doubts over a potential volunteer's ability to cope in the home when faced by death, about their reliability, their emotional stability or the degree of support at home or from their church---perhaps they do not even belong to one. If someone at home is deeply hostile to those with AIDS we may suggest the person waits a little before going ahead as a volunteer. Support from those at home is very important.

Another question we need to ask is whether the volunteer is the sort of person we want to represent our service in the community. What is the person like under pressure? How is the person likely to respond to sensitive situations? For most people who are ill, or for their carers, their impression of ACET's service will be made by their impression of the volunteer.

When the pressure is on it is tempting to accept all kinds of offers, but ultimately it may damage the service. The ideal volunteer is the sort of person we would be keen to employ if the person was available and we had the funds.

Training and sending (return to index)

Most people with AIDS in the UK are well informed about their condition---they have to be with so much misinformation and ignorance around. Training needs to cover a broad range of medical facts about AIDS.

It is rude, insensitive and unfair to send in a volunteer who is ignorant about the disease. Training therefore includes not only clear factual presentations, but also opportunity for people to work through hidden reactions to homosexuality, fear of dying and fear of disease.

Facts can be communicated formally or informally in large groups or small. However, we have found small groups are the best forum in which to cover such things as death and dying, grief and loss, and sex and sexuality. Reactions, responses and prejudices also need to be explored. People need to be familiarised with the drugs culture where relevant, and the need to understand how to prevent cross-infection. Videos can be an excellent way to open up issues and to stimulate discussion. ACET has used videos in small group training since the earliest days. One-to-one counselling is sometimes necessary following a group session, together with church-based pastoral support and prayer.

Support (return to index)

A useful part of ACET's training programme is developing friendships between volunteers and existing team members. The work is stressful. It can be harrowing to visit someone a few hours before death and spend time with them as they pour out their anger in the face of doctors' false promises, dead hopes and dashed aspirations. It can be hard to stay with someone who keeps asking, `Why me?'

It can also be very difficult to support someone with a major psychological disturbance due to HIV damage to the brain (encephalopathy). The person may be withdrawn and deeply depressed, or wildly elated, overactive, with torrents of continuous speech, unpredictable and uncontrollable to the point of putting himself at risk. The person may be confused, forgetful and disorientated.

It can be distressing to be with a dying person for several hours and have to leave, knowing that they may then die alone. It can be particularly difficult when someone dies who has become quite a close friend through several months or even years. Grief is a reality and is part of the cost of what we do.

Support is essential: a network of caring relationships between like-minded people who have experienced similar things and can understand. It is good to encourage local church support, and volunteers to pray for each other.

Communication (return to index)

We have found it is important that volunteers report back after visits, unless they are routine---for communication and for support. It is also important that arrangements for future visits are made with the office, not with individual volunteers, for two reasons. First, so the office knows what is going on, and secondly to prevent undue pressures on one person.

It is hard to say no when you are in a home and someone needs more things to be done, or another visit. Volunteers are by their very nature people who like to say yes, and they need to be protected. If an individual is becoming quite ill, we have found it is helpful to ensure the person is known to several volunteers so that the load can be shared among a number of familiar faces.

Co-ordinators can usually spot a volunteer who is getting out of his or her depth or is becoming over-involved to the detriment of personal well-being.

Volunteers cost money (return to index)

Volunteers are not free: they are expensive to train, and take time to book in and out, and time to support. In some countries where many live at a subsistence level, the whole concept of volunteers needs adapting. If people are helping us instead of growing food then we need to help them in return.

Even in industrialised countries volunteers are usually only able to commit themselves for a limited time. Each year we have to train some to replace those who have moved on in addition to those needed because the service is growing.

Continuity of care can also be more difficult to provide using volunteers if round-the-clock help is needed. Over a weekend, for instance, it would be unfair to ask the same volunteer to stay in the home for more than one night, or for more than half a day. Therefore we could end up having to use up to twelve different people in three days alone.

Employing care assistants can be a way of reducing that number considerably. ACET has always been fortunate in having a number of medical students, nurses in training, people training for the ministry and others from overseas who are keen to learn by spending up to three months with us. They also make an enormous contribution in return for some formal teaching and training. In addition, they go back as a new resource to their communities and countries; some to set up their own services.

Volunteers need careful organising, and finding suitable volunteers available at short notice can be difficult---especially for daytime requests. ACET tries to match volunteers to tasks and people. Volunteers vary a lot in what they are able to do and in whom they are good at relating to.

ACET has had to keep quiet about the location of different offices because they are not geared up for drop-in callers---and it is important to avoid the possibility of being broken into, with the threat of harassment or blackmail of those whose names and addresses are taken. In the UK we have used PO boxes extensively for these reasons.

The sorts of things volunteers do (return to index)

This depends on experience, personality and availability. Each volunteer has special potential which needs to be harnessed creatively. A nurse provides a different type of help from a builder.

Shopping, laundry, gardening, cleaning, cooking, walking the dog, mending things around the house, driving a person to and from clinics, and being a good friend are important ways to serve any sick person. A good attitude is that of a servant, basically saying, `I am here. I am available now and at these times in the future. What can I do that would be helpful? Suggest some things that you would be willing and able to do.

Sometimes it has been helpful just to have a volunteer sit in the home to allow a friend, partner or relative to go out. The carer may feel trapped, unable to leave the room or the house with a sick person needing constant attention. After a while exhaustion sets in. Sometimes the main carer may have taken so much time off work already that a job may be in jeopardy. Nightsitting is also important when the person is weak or afraid.

People I talk to often think first about setting up counselling services. This is probably because in each country infection precedes illness so the first needs are often to support those who have recently discovered they are infected.

However, I will never forget one of our first patients who said he felt he was being counselled into his coffin, and described how a counsellor had arrived for a weekly chat. After he had gone the ACET volunteer arrived. The person with AIDS lifted up the sheets and smiled. Underneath he had been lying in his own faeces for several hours, unable to tell the counsellor because of his embarrassment.

The volunteer cleaned him up and helped him have a bath, changed the bedding and took it to the laundry. Sometimes actions speak more than words. Words and a listening ear can cost less than getting your hands dirty---although it is also true that sometimes we can hide from harrowing conversations by making ourselves busy.

There are many forms of counselling: pre- and post-HIV test, bereavement, anticipatory grief and so on. Counselling is very important but there are often many other agencies willing and able to provide such help. Counselling is also a sensitive area, since Christians may wish to provide directive counselling, helping people find faith in God or to follow Christian lifestyles, while those wanting help may be looking for a non-directive approach.

Because of all these sensitivities, ACET has tended to steer clear of a formal counselling role, particularly in the UK. Emotional support, however, is an integral part of caring for those ill or dying, whether making a cup of tea, holding someone's hand or just being there to listen. The companionship of a sensitive person can make all the difference to those coping with grief and loss.