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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

 

    

LIVING WITH HAEMOPHILIA AND HIV

A DISCUSSION DOCUMENT

Proposals developed from a conference held by

The Birchgrove Group

and discussions with regional co-ordinators of haemophilia and HIV mutual-support groups

September 1993.

© The Birchgrove Group

A POSITION STATEMENT
(with heartfelt acknowledgement to our Australian friends)

From April Fool's Day. A Modern Tragedy. Bryce Courtenay. William Heinemann Ltd. Melbourne, Australia. 1993.

‘If I have seemed angry at times in this book, it is not over the fact that Damon died of AIDS, but that his death was due to callousness and complacency, which didn't simply come from the ignorance of the medical bureaucracy. They, I feel sure, mirrored the ambivalent attitude society immediately adopted towards this disease when it was stereotyped as a homosexual affliction.

Damon also asked me to write this book in an attempt to dispel the inclination he found in so many straight people to classify and vilify people with AIDS. The snigger behind the hand. The dismissive grunt. He wanted me to warn against the brutally thoughtless assumptions which are destroying the credibility of AIDS as a tragic disease for all humankind.

I recall the words he used at a talk he was asked to give to a medical conference as a haemophiliac with AIDS. I thought at the time they were pretty sophisticated words for such a young man, I now realise how elegantly simple they in fact were.

Damon said:

"If we don't change our thinking about AIDS it will almost certainly spread rapidly among the heterosexual society.

If we don't start to love the people with AIDS, it will eventually destroy our ability to love each other.

If we don't love each other, we will not heal the differences or ever cure AIDS."

....Or that's how Damon saw it, anyway. Damon wanted a book that talked a lot about love.’

Damon Courtenay – Australian Haemophiliac with HIV 1967 – 1991

 

C O N T E N T S

FOREWORD

DISCUSSION

Introduction

  1. The current situation
  2. Background to this document
  3. Is there a need for social and psychological support?
  4. Does this need exist amongst people with haemophilia and HIV?
  5. What do mutual support groups have to offer?
  6. The way ahead

    RECOMMENDATIONS

    Developing a needs-led service 25

  7. Extending local mutual-support activities 26
  8. Planning and implementing a nationally-coordinated outreach project 28

References

APPENDICES

I. Project proposal
II. Job Description for National Co-ordinator
III. Person specification for National Co-ordinator

25 September 1993

 

FOREWORD

This report has arisen from seven years' experience of initiating, organising, running, and participating in a mutual-support group for people with haemophilia and HIV – The Birchgrove Group. During this time the group extended its help to the partners and families of those with haemophilia and HIV. Recently the group is working with those who have lost sons, husbands, and partners.

Birchgrove is a group that is rich in experience – of living, of loving, and of losing. The group's feisty determination to survive has carried its members through extraordinary times – both good and bad. Yet, as Gareth Lewis points out in the 1993 Conference Report1,

‘After a while, we began to wonder what we could do as a local group, to reach the hundreds of people who are still having to deal with all their problems alone – with nobody to help or give support. Most importantly, (with) no-one to listen, and to try to understand and alleviate some of those fears...by explaining that they are not alone; that we can all go through stages of depression; and we all share those fears for the future. At least we have people we can turn to in times of need. When I stop and think about what they are going through, then I believe that we must do something to offer some of the opportunities that we, as the Birchgrove Group, have managed to obtain.'

We address this report to all agencies in a position to help extend the mutually-supportive aims of a group like the Birchgrove. The needs of those living with haemophilia and HIV are complex and are, we believe, best understood by drawing on the direct experience of those with both conditions. This paper sets out a case for specific funding, and proposes a model for outreach and development work.

Some readers will be familiar with the situation of those with haemophilia. Others may be more aware of the problems faced by people living with HIV. The two groups do not always work as closely as they might. We hope this report and its proposals will start to remedy what, in our experience, has been a communication gap. The Birchgrove Group.

DISCUSSION

1. Introduction

What is different about people with haemophilia? 1.1 Haemophilia is a rare disease caused by abnormal coding on the X-chromosome. It is almost invariably confined to males. The severity of the condition depends on the levels of missing clotting factors in blood. Both types of haemophilia, A and B, cause repeated, spontaneous and painful bleeding into muscles and joints. Despite treatment with the missing blood protein – Factor VIII or Factor IX – the condition is usually physically crippling. In addition, haemophilia is an unpredictable, socially disruptive and chronic condition that requires life-long hospital treatment.

1.2 Up until two decades ago the medical treatment for haemophilia consisted of ‘bed rest' and analgesia. The latter often led to problems of over-use and not infrequently, addiction. Later on, hospitals gave treatments with snake venom for external bleeding, or with fresh frozen plasma containing the necessary clotting factor. The wide-scale use of commercially-derived clotting factors during the 1970s transformed the lives of those with haemophilia. Many were able to avoid long journeys to haemophilia centres for treatment, and managed their own infusions, when necessary, at home. Travel away from home became a possibility, not a nightmare; children could be integrated into the normal education system, not sent away to special schools; and the opportunity to take up full-time employment without the need for frequent absences, became a reality.

1.3 Public knowledge about the condition is poor, and even prior to acquiring HIV infection, many haemophiliacs lost jobs as a result of discrimination and ignorance2. By using clotting factors to treat bleeding episodes, it became possible, slowly, to begin a process of re-integration into something resembling a ‘normal' life. Younger people managed to stave off the more obviously crippling effects of the condition, and often ‘passed' for an unaffected individual:

‘...I remember seeing him walking towards us with a limp. I thought nothing of it. Perhaps he'd hurt his leg or something. What I did notice was that he walked with his arms wide and slightly bent. I turned to Toby and laughed, "Damon really thinks he's incredibly macho, doesn't he?"

Toby looked at me quizzically. "Damon's a haemophiliac. One arm's permanently bent, one leg too, from bleeding into the joints. He does that with his arms so people won't notice the bent one." He smiled, "Better to be thought macho than deformed, eh?"' (see Couteney3, page 129)

Young people with haemophilia are known to suffer difficulties with empowerment4, and these problems have been exacerbated by acquisition of HIV. However, as the short extract vividly portrays they are also adept at camouflaging their condition, until severe bleeding episodes intervene. In this way, the effects of social stigma (which certainly exist) are limited. As Wilkie5 has pointed out, the more recent association of HIV, AIDS and haemophilia has both exacerbated stigma, and increased the social isolation for affected individuals and their families. It is in this context that mutual-support groups can be an invaluable, and often irreplaceable, life-line to normality. This is explored further in section 3.11, where we review some of the recent literature.

2. The current situation

2.1 The history of contamination of commercially-derived blood products with the human immunodeficiency virus (HIV) is too well known to repeat here. Yet the impact on individual haemophiliacs and their families are not so well known. The consequences have been little short of catastrophic.

2.2 In the UK there are an estimated 5,000 people with haemophilia. More than 1,230 of these boys and men, and at least 41 of their partners are known to have been infected with the HIV virus6. To date, 554 haemophiliacs with HIV, and 9 infected partners/spouses have died7. [check figures]

2.3 In one sense it was in recognition of this that the government made their awards, Ł10 million in 1987 and a further Ł24 million through the newly established Macfarlane Trust in 1989. Personal ‘recompense' payments were finally made to individuals in December 1990, following a successful campaign by the Haemophilia Society.

2.4 The lobbying campaign was an intensive, emotionally exhausting and stressful period for everyone, and took a heavy health toll on the affected individuals and their families. When payment was finally made and the media coverage died down, the ‘haemophilia problem' as it had been seen by government, was presumed to be solved. Not so – as this report asserts.

2.5 There is an on-going and increasingly urgent need for proper, organized and concerted attempts to provide people with haemophilia and HIV with appropriate mechanisms for both psychological and social support (see section 5 for elaboration on this needs-driven approach). Before recommendations related to this are outlined, the present structure for helping people with haemophilia and HIV should be described.

2.6 The Haemophilia Society was founded in 1950, primarily to ‘provide a fellowship for people with haemophilia and those concerned with their health and welfare, and to give advice on their problems'. Yet the Society itself is struggling to survive financially. Its 1992 income was Ł521,769 of which more than 1/3 was derived from legacies. Expenditure was Ł497,143, of which roughly 1/3 went to support a variety of membership issues. Only 5 per cent went towards local group activities8.

The Haemophilia Society publicly acknowledge that

‘...people with haemophilia have never needed a Society more than today.... life for people with haemophilia is fraught with problems and the pathway is strewn with obstacles which demand the presence of an active and healthy organisation geared to representing the interests of people with haemophilia on a daily basis.' [see (6), page 5]

We agree, wholeheartedly. And these sentiments are doubly magnified for those shouldering the burden not only of haemophilia, but also of HIV.

The Haemophilia Society may have the will to help individuals and families represented by groups such as the Birchgrove. However, it does not yet have adequate funding to support, let alone coordinate a national initiative along the same lines. This needs to be addressed.

2.7 The Macfarlane Trust, on the other hand, reported assets of over Ł9 million at the year ending March 1993. Funds were boosted by a government payment of Ł5 million, in recognition of the Trust's case for the need to be able to maintain levels of financial assistance. The Macfarlane Trust Annual Report states,

‘...we are now able to continue the Trust's activities from a point where financially we are almost back to where we started.....without the backlog of need that met the Trust at its beginning.' [Annual Report, p.7]

We cannot agree completely with the second statement. There is a backlog of need, but of a different nature from the financial hardship and severe economic stress that was experienced in the late 1980s.

    

We also point out – a painfully obvious fact – that the Trust's client base has been reduced significantly. Eighty-one people with haemophilia and HIV died in the last year. Eight partners also died. More than a third of people on the Trust's register are dead. The two-thirds or so that remain are living with a chronic condition that has brought physical, psychological and emotional chaos. And not only to them alone – also to their families and partners. We strongly believe from our own experience, from evidence of published data, and from reports and expert opinion, that the non-financial needs of this group of survivors will increase over time.

The terms of reference for the Macfarlane Trust at present restricts them to making single payments on a welfare basis. At present they are legally prohibited from unlocking a portion of the funds they hold, in order to develop group support initiatives. We cannot believe that single payments are solely the most appropriate use of such financial resources.

The quandary is that while the Haemophilia Society might have the will to develop the initiatives proposed by the Birchgrove Group, it does not have the money. On the other hand, the Macfarlane Trust has the money, and is apparently unable to meet the non-financial welfare needs of people with haemophilia and HIV, outlined in this paper. The end result is that these needs are, simply, not being met. This is a shocking situation, which must change.

We make proposals regarding the Macfarlane Trust remit, in section 5.

2.8 Other helping agencies are available for those with HIV infection, and have in many cases proved the only non-medical resource for people with haemophilia and HIV. They range in size from organisations like the Terrance Higgins Trust and Body Positive, to small local help-lines. We would very much hope to increase links and communication between these organisations, and groups representing men with haemophilia and HIV. In fact, members of the Birchgrove group have been in touch with members of Body Positive, for some time. However, it is fair to say that the overwhelming majority of clients for such agencies remain HIV-positive men who are gay, and their partners; other agencies have been developed to address the needs of drug users, of black and ethnic minorities, and of ‘women' (as a generic and unspecified grouping).

We strongly support the work of such agencies, whose often limited funding belies the energy and commitment of their workers. Nonetheless, they are not geared up to deal with the needs of heterosexual HIV-positive men who have haemophilia. They also experience some difficulty in accommodating the needs of gay men with haemophilia and HIV.

We should also note in passing that the Birchgrove Group's National Conference in July made significant steps towards setting up better dialogue between those with haemophilia and HIV, and others in the "HIV community" (for want of a better description). An attentive and increasingly enthusiastic reception was given to the representatives of the Terrance Higgins Trust and Body Positive, and we believe this improved communication should be built upon by those in other national organisations.

2.9 This is not merely hearsay, or guesswork. Work by Heeson and Higgins9 at St Thomas' Hospital has revealed the difficulties experienced by heterosexual HIV-positive men who have sought support within predominantly gay groups. Gay men often feel inhibited by the presence of heterosexual men in a group, and the feeling tends to be reciprocated. This may be unfortunate, but it is not unusual. In addition, men with haemophilia and HIV often have to confront hostility engended by

i) press labelling of their status as ‘innocent victims' – implying that others with HIV are ‘guilty',
ii) the fact that they are one of only two groups which have been awarded cash ‘recompense' for iatrogenically-induced HIV infection (the other group being those with transfusion-acquired HIV).

2.10 It should not be surprising therefore, that men with haemophilia and HIV do not always fit comfortably into a social grouping of other HIV-positive individuals. At the same time, the expression of anti-gay sentiments can also make life very painful for those with haemophilia who are HIV-positive, and gay. With time, this may be overcome. But time is not something that people with haemophilia and HIV are willing to squander.

2.11 The other difficulty faced by existing HIV-oriented agencies who might wish to help those with haemophilia and HIV is simply ignorance. We have already outlined the fact that public knowledge of haemophilia is poor. Indeed, the condition is a medical speciality confined to haematologists, and seldom comes within the wider orbit of non-specialist nurses and paramedics, let alone of general practitioners. This situation needs to be changed. In a recent paper in The Lancet10 Mansfield and Singh point out that

‘HIV infection is now understood to be a chronic condition, with a plethora of manifestations affecting physical and social status, and psychological well-being....a hospital based service is now becoming untenable, inappropriate, and wasteful of local resources.'

Their alternative – multidisciplinary, community-based care – requires information, education, and improved liaison between hospitals and those in the community. It is our firm belief that strategically sited linkworkers, appropriately trained and skilled, can act as essential communicators between hospital services, community care givers, and people with haemophilia and HIV. Such linkworkers would provide a highly cost-effective role as facilitators for mutual-support groups, educators in the community care setting, information sources for hospital staff, and provide a ready means of communication between all three parties. This model is expanded in our ‘Recommendations' section, and a full project proposal is included as Appendix I.

3. Background to this document

3.1 We should perhaps make clear that this document is written from a particular philosophical, and yet entirely practical standpoint. This is, those who are bought together by crisis and common history can share a form of support and strength – irreplacable and rare. As one early member of the Birchgrove Group put it:

‘...most of us felt the need for someone to turn to in a crisis, or for advice, who was not necessarily a professional medical or social worker. The Haemophilia Unit is there for more formal professional advice.... Like everyone else, I drew comfort from the fact that the group was there, and I knew I could talk to its members in a way I could not talk to anyone else, other than my wife."11

In our work over the past seven years, we have been surprised and angered that there is still a need to validate this view. The Birchgrove Group exists. It has existed for seven years. Its members include haemophiliacs with HIV, youngsters, wives, partners and widows. Members of Birchgrove have been involved in teaching professionals about HIV and about haemophilia. The group has also extended its support to others throughout the country.

As well as this evidence, we have tried to present some of the academic and research findings appropriate to each sector – HIV and AIDS, haemophilia and HIV, mutual support groups, and the community vs. institutional approach to care. Lack of time and money mean that this review is far from complete, and we would welcome efforts by other individuals and organisations to make a more thorough review. Given these limitations, we still believe we have presented a fair picture of current research opinion.

Is there a need for social and psychological support?

3.2 There can be few studies made of patients with HIV that do not stress the physical and emotional crisis that infection produces. In a recent document on AIDS, the World Health Organisation (WHO) gives a good overview: ‘

A diagnosis of HIV infection or AIDS...brings with it profound emotional, social, behavioural, and medical consequences. The subsequent individual and social adjustments required often have implications for family life, sexual and social relations, work, education, spiritual needs, legal status, and civil rights. Adjustment to HIV infection involves constant stress management and adaptation. It is a dynamic, evolutionary, and lifelong process that makes new and changing demands on the infected individuals, their families and the communities in which they live....

Awareness of HIV infection can create enormous psychological pressures and anxieties that can delay constructive change or worsen illness, especially in view of the fear, misunderstanding, and discrimination provoked by the HIV epidemic.'12

3.3 The impact on the individual of HIV-positivity is profound. This seems worth reiterating. HIV and AIDS are severely stigmatising conditions. Affected individuals are frequently met with fear, horror, avoidance and repulsion. Many people with haemophilia and HIV feel they have become ‘social lepers', and this intensifies a sense of isolation and stigma. Social support is notably lacking, particularly for those who live in communities where fear of HIV (and/or homophobia) is matched by ignorance of the condition.

The psychological and emotional implications of living with HIV have been very well documented (see for example Wilkie & Anderson3, Miller13, King14,15, Mandel16, Morin17 and others), and we hope it is not necessary to describe these findings here. Our conclusion, from our own experience, and from a glance through the literature, is that the case for emotional and psychological support is proven.

Does this need exist amongst people with haemophilia and HIV?

3.4 There is already the long-term evidence of need gained through the experience of the Birchgrove group. In addition, we can offer the evidence of the 42 people with haemophilia and HIV, all in varying stages of health and illness, who made a special effort to attend the July Conference in London. Some extra-ordinary efforts were involved – for example to the extent of travelling from Northern Ireland to attend the weekend. Add to this the forty or so partners, wives, mums and dads who attended, drawn from all over the country. We believe this is a remarkable result for an event that had, practically, little external support or advertising.

3.4 The Conference Report gives fuller details of the July weekend. In particular there was a clear commitment from those who attended to continue with the effort to make contact. From the evaluation responses, 78 per cent said they would like to be put in contact with others in the same situation; 77 per cent said they would be willing to help organise further activities locally. Many letters of support and thanks came in to the Birchgrove group over the next couple of weeks. Two responses, both from HIV-positive haemophiliacs, serve to illustrate the tenor of feeling:

‘The friendship gained over the weekend is so strong, very supportive and deeply caring. Feelings that have never been allowed to be shown or talked about before, could be, knowing that they would be understood by all those attending.' (Conference Report; Respondent X)

‘It is hard to impart my feelings, but no-one would have believed that a weekend could change someone's life, so dramatically, and as much as the one you have just held, did. It was an experience that I shall remember for the rest of my life.' (Conference Report; Respondent Y)

3.5 There is a need, because living with haemophilia and HIV carries with it a burden of often unseen effects. After the July Conference, a meeting was held to plan the way ahead. During a brainstorming session to identify what made living with haemophilia and HIV different from other conditions, the participants came up spontaneously with a whole range ideas of what it was like to live with the two conditions. These are shown figuratively on page 11.

3.6 While the material above is largely qualitative and anecdotal, there are a number of formal studies of people with haemophilia and HIV, and of their families. In looking through the literature, it seems clear that haemophiliacs with HIV attract far more attention in the area of clinical trials than they do for sociological and psychological researchers. This is a pity. While no group willingly wants to become a ‘guinea pig' for research, greater research attention to the non-clinical needs of people with haemophilia and HIV would, we believe, have helped to put better support structures in place earlier on.

3.7 Some more recent studies relating to haemophilia and HIV are noted below:

* Smith, Rosendaal & Varekamp (1989)18 Even before the advent of HIV-infection people with haemophilia, particularly those born before the advent of modern treatment, were found to be especially vulnerable to psychological and social problems.

* Dew, Ragni & Nimorwicz (1990)19 This study looked at 75 haemophiliac men, 31 with positive HIV status and found that the latter have increased levels of depression, anxiety and anger. This did not relate to any past psychiatric disorder, and the authors concluded that the difference was entirely due to the presence of HIV-infection.

* The findings of this study are confirmed by those of Catalan et al (1992)20.

Figure 1 BRAINSTORMING SESSION : Saturday 11 September 1993.

* An earlier study by Catalan (1990)21 showed that over time some of the psychological differences between the seropositive and non-affected men with haemophilia had lessened. However, the remaining concern was identified as anxiety around sexual activity, and the fear of infecting a partner.

* Blomqvist, Jonsson & Theorell (1991)22 Looked at both men with haemophilia and HIV and the parents of HIV-infected boys with haemophilia. Again, the psychological stresses are highlighted. In addition, the researchers reported that ‘..reactions of the parents to the news of their child's infection was apparently more devastating than the reactions of the seropositive men to their own infection, demonstrating the extreme stresses that result in families.' [These differences may not be so surprising – see 3.8 below]

* There have been a number of studies examining the impact of HIV-status on spouses and families (for example, Curran et al (1984)23, Miller and Harrington, 198924, Dew et al (1991), Klimes et al (1992) 25). While their findings are mixed, they all identify the fact that carers of people with haemophilia and HIV are also subject to intense social and emotional stresses.

    

3.8 One of the features of people living with haemophlia is a certain hardiness to medical interventions. Lives are marked by serious bleeds, uncomfortable and painful treatments, life-threatening illnesses, and iatrogenially-acquired infections – notably hepatitis B and hepatitis C. Confirmation of HIV-infection may initially have seemed like the acquisition of ‘...just another virus'. Ironically, haemophiliacs, particularly those over the age of 30, could be said to have survived in spite of the early medical treatment they received, rather than because of it. This breeds an attitude that is generally tenacious of life. However, this early habituation to medical treatment has perhaps led to another problem, and one not so often addressed by researchers. In the Birchgrove Group it has been called ‘assumed competence'.

3.9 Competence – both actual and assumed – is something that most people with haemophilia acquire very early in their lives, almost as soon as they become accustomed to medical care. Many children are taught to prepare and administer their own Factor VIII; many adults temporarily admitted to hospital take an active, and even lead role in their own clinical management. This sense of competence is gradually reinforced as clinical staff begin to build a relationship with the long-term attenders at Haemophilia Centres. It is a response to repeated episodes and patterns of crisis in their lives. It did not, and does not, however, help people with haemophilia and HIV learn to live with their diagnosis. In fact, the ‘assumed competence' may have prevented careful social and psychological support being sought, or offered at an early stage.

3.10 Living with haemophilia is something that can, with difficulty and time, be adjusted to. Living with haemophilia and HIV is another matter, because of the social stigma involved, the risk to wives and lovers, and the grief and anger associated with all the insidious losses that infection brings. This is not something in which people can become ‘competent'. We believe there is a danger of assuming that because people with haemophilia and HIV are competent self-managers of their clinical conditions, this extends to their psychological and emotional lives. It does not.

We believe there is good academic evidence for the need to establish and maintain proper mechanism of social, psychological and emotional support to for people with haemophilia and HIV. Qualitative, personal and anecdotal evidence is also available, for those who wish to investigate further.

What do mutual-support groups have to offer?

3.11 In this section we develop the concept of the mutual-support group as one means of meeting the need of people with haemophilia and HIV for better social and psychological care. That there are other mechanisms and structures is not disputed (the implications of some of these are discussed in section 4). Our own experience, however, has led us to favour the most direct, personal approach – of mutual support.

3.12 The philosophy of the mutual-support, or ‘self-help' group is not a new one (for background see for example Vincent26). Such groups have however, achieved greater prominence in the last couple of decades, as the debate on the so-called ‘mixed-economy of health care' has accelerated. It is our belief that the role of the voluntary sector in supporting and facilitating such groups must also grow, notably as the debate about funding policies for HIV and AIDS is better resolved27. We touch on this point further at section 4.5 and 6.

3.13 What is a mutual support group? One good description is:

'A self-help/mutual aid group is made up of people who experience the same problem or life situation, either directly or through their families and friends. They come together for mutual support and to share experiences, information, and ways of coping. Groups are run by and for their members. Some self-help groups expand their activities. For example they may provide services for people who face the same problem or life situation; or they may campaign for change. Professionals may sometimes take part in various ways, when asked to do so by the group.' [see Wilson (1993)28]

3.14 One of the fundamental features of such groups is user-empowerment and this in itself builds confidence, self-esteem and hope for the future. These qualities are greatly need for those living under the shadow of HIV. For many professionals new to the idea, ‘user empowerment' can seem a little threatening, or at least daunting (we discuss this at 3.17, below). Equally, members to mutual-support groups may also face new personal challenges to re-think their attitudes to life:

‘...I felt that being a haemophiliac had made me lie back and be a "good" patient all my life; and that just accepting the HIV virus, and accepting a sense of inevitability was not good enough. Acccepting that no-one is offering what is needed is not good enough, either.' (see Conference Report1, page 10)

‘...I would say to ...you...that a person who has hope and a fresh outlook on life is far better equipped to deal with an uncertain future.' (op cit, page 10)

Individuals within the Birchgrove Group have developed significant new skills and roles. These include the education of professionals unfamiliar with haemophilia (and HIV); writing and producing reports and literature; organising conferences; and a strong advocacy role for the broader social and emotional needs of both regular group members, and those who move in and out of the group. These are not isolated events – mutual-support groups have the ability to transform, and certainly enrich the quality of life of their members.

3.15 While there have been extensive studies of self-help/mutual-support groups, the bulk of the literature is derived from the USA (see for example29 for a review of the US data). Nonetheless, there are a number of good, authoritative reviews of the UK experience, some of them undertaken by social work professionals (such as the study by Harding & Upton30), and others by community development workers31. The studies we refer to are, unless indicated otherwise, based on UK research.

3.16 A noteworthy feature of a review of the self-help literature is the indication that more medical professionals are becoming involved in this area.

An important UK study by Lock (ex-editor of the British Medical Journal) found that in a survey of 68 doctors, the majority of them were in favour of self-help groups32. In fact more recent studies show that the professionals most likely to be interested in developing such groups are largely GPs, social workers, nurses, mental health workers, and health promotion workers. Surprisingly (and important in the context of this paper), as a group GPs have been largely excluded from the debate on service provision for people with HIV and AIDS. There are, however, signs that the tide is now turning towards primary (community) rather than acute (hospital) service provision33.

3.17 It is perhaps surprising that there are not more groups designed to meet the needs of specific groups of patients. An early study by Gunn34 stressed the ‘inestimable help' mutual support groups can provide to doctors' patients. He also argued that their development should neither be feared not viewed with suspicion by the medical establishment. This is important, for as medical knowledge and technology advances, it becomes more difficult for local communities to offer adequate social support to those in need. Mapes and John35 argued ten years ago that the medical profession could no longer ignore self help/mutual support groups, and that their development required a change in attitude by doctors.

3.18 Mutual-support groups can and do work. A German study by Trojan36 looked at 232 members drawn from 65 disease related groups. He found that group goals (for example mutual support, and information sharing) were achieved by more than 90 per cent of group members; goals directed outside the group (to family or professionals) were achieved by about two thirds of the respondents. Professor Trojan concludes that while self-help groups cannot replace professional services, they ‘..should get public support because they have an important function for people suffering from chronic diseases, or other problems'. Either way, professionals and self-help advocates must learn to work more closely together.

3.19 The experience of the Birchgrove Group, in our contact with both medical and social work professionals, has been good. However, we are aware that this is not a universal experience. We think it important to address, albeit briefly, the question of the tension underlying any relationship between mutual support groups, health care professionals, and other ‘caring' agencies. In fact the impetus for setting up a group can, in some cases, be a hostile or unhelpful reaction from professional service providers. A number of studies identify blocks to facilitating self-help initiatives, for example

* Suspicion: What is the group doing? Who are they? Can I trust the quality and the consistency of their efforts if I refer patients to them? (Black's study of doctors37)

* Conflict: lack of agreement on the differing roles and responsibilities of professionals versus members of the group (Davis's work with nurses38)

* Confusion: difficulties in agreeing ‘boundaries', such as whether a group falls within the domain of particular professionals or management structures; these might be Haemophilia Centres, Social Work Departments; alternatively, HIV/AIDS agencies, and the Haemophilia Society (the 1983 WHO Report has a useful discussion on some of these issues39)

* Inadequate experience: lack of knowledge, information, and understanding of the differences between integral self-help (where the professional worker is in control), facilitated self-help (where the professional is in a ‘back seat'), and autonomous self-help (where the self-helper is fully in control, and in fact drives the operation independently of any professional help) There are very fundamental differences between these types of help. (Adams' usefully discusses some of these issues as they impinge on social work and user-empowerment40)

Addressing these blocks to self-help facilitation are crucial in the context of groups such as the Birchgrove, where members are in touch with professionals working in a variety of fields.

3.20 One of the key factors in the comparative scarcity of self-help groups is not patient/individual apathy; rather, it is often because professionals in a position to encourage and support such group endeavours, do not pass on the necessary information to potential group members41,42. Such professionals might include staff at Haemophilia Centres, in Medical Social Work Departments, general practitioners, and even sometimes local HIV/AIDS helpers. For example, ‘In one of the sessions a couple complained that they were the only people in their Haemophilia Centre who were motivated to seek out others – only to discover that they were sat alongside someone else from their Centre, in exactly the same situation...' (Conference Report1, page 11)

3.21 Many writers underline the fact that local groups have to establish credibility with professionals before the latter will feel confident about making referrals (this has been part of the Birchgrove Group's on-going task). In such cases, a recognised, supportive infrastructure can work wonders. As Gay commented in her study of self-help group for drug users' families43:

‘...one of the spin-offs from having a national organisation is a speeding up of the process. The forging of strong links between the groups and the professionals can be of great value in both directions; the groups get referrals, information and support; and the professionals invaluable help with aspects of their work for which they may have little time, inclination, or only limited expertise'. (Gay, p.64)

This, in a nutshell, is the fundamental rationale behind both this discussion document, and the proposals we make. It leads on to what we believe is the way ahead.

4. The way ahead

4.1 When the Birchgrove Group decided to hold a national conference in London in July 1993, it was primarily to bring together as many people with haemophilia and HIV, and their families, as possible. The aims of the weekend included:

* to meet with others living directly with the HIV virus
* to share the benefits of self-help
* to find out what people wanted from bodies like the Macfarlane Trust and the national Haemophilia Society
* to build links with the Body Positive groups and the Terrence Higgins Trust.
* to work towards setting up a national network of mutual-support groups

4.2 As this report has described, these aims were all met. In addition, work began to drive forward the goal of a national network of mutual-support groups for people with haemophilia and HIV. In this regard, a number of specific themes emerged from the conference and from discussions afterwards. It was agreed there was a requirement for a model which would :

* meet the expressed needs of those attending the Conference, and those who were in touch with the Birchgrove Group through other means,
* bridge the communication and care gap that is currently perceived to exist between the areas of haemophilia and that of HIV,
* maximise the existing financial and human resources, and work alongside agencies in the field, rather than be absorbed by them (thus keeping true to the mutual-support/user empowerment model),
* help to increase the level and quality of information about haemophilia to groups and organisations in the HIV/AIDS world, and similarly to help increase the knowledge of HIV amongst haemophilia organisations and their membership,
* provide a model for outreach work that could, should the need arise, be built upon for the support of those with chronic hepatitis C infection (in other words, so such individuals would not have to build up groups from a standing start).

4.3 The project envisaged by the Birchgrove Group is described in more detail at Appendix I. A rough structural outline is indicated in Figure 2.

Briefly, we see the project as follows: regional or local mutual-support groups are facilitated by a professional linkworker (perhaps working out of an existing HIV/AIDS unit), whose work is coordinated by a national network manager. The latter would be based in a sponsoring agency, preferably one that is able to help establish good links with other voluntary and statutory agencies involved in the area. The mutual-support, needs-led nature of the exercise would be safeguarded by lines of accountability. We are very clear that the direct line of accountability for the national co-ordinator should be to the Steering Group, a majority of whose members should be drawn from those with haemophilia and HIV. [See also Appendix I]

This is the broad scheme only. It is, like the rest of this document, drawn from our own needs-based approach.

Why is a sponsoring agency needed?

4.4 We need to seek the collaboration with a sponsoring agency for a number of reasons. The scheme will need funding – and many major trusts and funding bodies restrict their grants to organisations with charitable status. We also want the scheme to act as a catalyst for improved communication between the various agencies involved in clinical, social and welfare provision for people with haemophilia and HIV. The sponsoring agency should have access to suitable networks, and be willing and able to develop closer links outside their own sector. Third, Birchgrove remains a voluntary group – not a management-led organisation. We want to be able to get on and do the work we were established for – mutual-support – rather than carry the additional burdens of management and detailed financial responsibilities.

4.5 There are other reasons for working through a sponsoring agency, most of which are well outlined in published studies, ranging in scope from pan-European (Council of Europe recommendations44), to national45, and regional46. All the reports we have read repeatedly stress the need for co-ordination. In itself this is indirect evidence of the most urgently needed change. The Council of Europe report says, of recipients of blood and blood products who have been infected with HIV:

‘...most recipients have a pre-existing medical condition and therefore often fall between specialist treatment for their pre-existing condition, and services for HIV/AIDS; this often results in problems of accessibility, which may be overcome through better co-ordination between both specialists services; ....many are young adults and encounter problems of empowerment.' (CoE report, page 11) The report identifies one of the most original and progressive aspects of health care policy as ‘..the involvement of voluntary organisations and the promotion of greater responsibility by the patients themselves for their own health' (CoE report, page 23). The Council goes on to recommend strongly that the statutory health sector cooperate with voluntary organisations, in order to meet the increasing needs of chronic HIV infection more fully.

These recommendations are clear endorsements of the type of approach we have set out in this discussion document.

Why is a national network coordinator needed?

4.6 We hope it is not necessary to have to justify this need at length. Briefly, not every health region carries the same caseload of HIV, let alone haemophilia and HIV. Funding has been allocated by the government to meet differential needs. Clearly it would be foolish to set up a national scheme for facilitating and linking mutual support groups, without building into it the necessary planning flexibility.

In addition, as the Job and Person Specification in Appendix II shows, the National Coordinator carries a variety of responsibilities. S/He will be a communicator, planner, and an advocate for those with haemophilia and HIV. We envisage that this post could become pivotal in ensuring that people with haemophilia and HIV are fully included in all planning of health and welfare services for people with HIV/AIDS, and their families.

Why are professional linkworkers needed?

4.7 We believe that these linkworkers are a fundamental part of the overall scheme, and the projected success of the project lies heavily in their hands. It has been suggested that the regional groups should be wholly self-servicing, and that there is no role for a professional link-worker. We do not agree.

4.8 Most of the studies on self-help groups identify the ‘fragility' of groups, their potential instability, and their vulnerability to declining membership. This is particularly so when group members may already be in poor health. In addition, both haemophilia and HIV are characterised by uncertainty, unpredictability and the need to make constant physical, social and emotional adjustments. Thus the need for group support may change over time; this means that some members will move in and out of the group, as their needs dictate. The important thing is that the group is able to maintain its presence, as far as possible, as predictable, constant and reliable source of information and support. This needs support from an external facilitator. S/He would be sensitively placed to respond, while not intruding on the developing group.

4.9 Related to this is the important issue of the changing needs within each group. There are important points here. All those who write knowledgeably about mutual-support groups stress that it is an adjunct and not a substitute for skilled clinical intervention, where necessary. For example, cases of mania and psychosis clearly will need to be helped in a professional environment. The same is true for instances where bereavement has led to intractable grief, which cannot always be supported wholly within the group's support system. With group permission, facilitators can help to identify points of difficulty early on, and from here find suitable external help. Thus the group knows that there is an interlinked, constant process of support through cycles of health and illness. Facilitators offer the certainty of a compassionate and responsible response when the group is not able – for a variety of reasons – to contain the needs of a member in severe difficulty. It is neither feasible, nor responsible, to expect individual members, themselves in need of support, to be able facilitate such a ‘safety net' procedure.

4.10 Many researchers have stressed the need for some sort of facilitation, if only in the early stages of group formation and growth47. In Gay's study of families of drug users, she points out that even when all conditions are promising, the high levels of distress and stigma experienced by individuals and their families make it very difficult to embark on self-help enterprises. The extensive and through report from Warwick University reiterates this, pointing out that

‘...nascent organisations, which given the right sort of help and encouragement may be perfectly viable, may founder at an early stage through lack of support. Given the acknowledged importance of the distinctive contribution that voluntary organisations can make to both preventive and care activities, it has been disappointing to note the very variable levels of help and support given to the voluntary sector by districts'. (Regional report on Wales, page 42)

4.11 The researchers make a variety of strong recommendations to address this problem, two of which we particularly endorse here:

‘(2)....Once a group is properly established, financial support should be given to enable the development of an appropriate service infrastructure with a minimum of one paid development worker/service co-ordinator. This should ensure reasonable continuity of service delivery.' (Warwick Report, page 42)

We have also stressed the need for the user of the mutual-support service to be represented in the relevant management structures (see page 19). Hence,

‘(3) Voluntary organisations may feel isolated and undervalued. They need to be convinced that they have the same status and can exert the same influence at management level as any other organisation providing services, and to be involved in future planning decisions.' (Warwick report, page 42)

4.12 A further use of professional link-workers is the development of strategies which will improve the groups' chances of survival. This is something with which the Birchgrove Group is familiar – the need to diversify group development, while maintaining the core activity of group support.

Like individuals, groups have to grow and develop in a whole range of ways if they are to continue to meet the needs of their members. One of the simplest ways to diversify, and the most resource efficient, is the development of telephone helplines; home visiting and one-to-one counselling represent other cost effective developments. Diversification, even through simple means, requires some additional resources. A helpline for example, might involve – automatic answering systems for telephone lines, on-call paging devices, volunteer expenses and proper training in telephone techniques. This requires organisation, advice and planning which is best provided through the help of an independent link-worker.

We recommend other diversified activities in the section that follows.

RECOMMENDATIONS

5. Developing a needs-led service

5.1 As described in section 2.7, the Macfarlane Trust is a dedicated organisation for the relief of hardship and stress amongst haemophiliacs who are also HIV positive. We stated earlier our belief in the logistical, financial, and administrative sense for a part of the resources held by the Trust to be freed-up for outreach work. Specifically, funds should be made available to offer their client group mechanisms for improving access to, and use of psychological and social supports.

RECOMMENDATION ONE:

The Trustees of the Macfarlane Trust seek an urgent meeting with Ministers to review the restrictive terms of the Trust charter. In particular, the restriction of financial support to single-payments should be amended to allow the Trust to develop mechanisms for offering significantly improved social and psychological support to their client group.

5.2 We note from the Trust's Annual Report that a census was taken in 1992/93. We are not convinced that this quantitative exercise is adequate to give the Trust sufficient management information for strategic planning. And we believe better strategic planning is needed. There have been significant improvements in the symptomatic treatment of AIDS-related conditions, and there is now evidence that the disease can become a chronic, fulminating condition. Reports from the United States48,49 have revealed that an estimated ten per cent of patients with AIDS live at least twice as long as the median survival period. People with haemophilia constitute an unusual group, whose lifestyle often confers a unique survival mentality. Although no UK data are yet available, it would not be surprising to find a disproportionate number of HIV-positive haemophiliacs amongst such long-term survivors. This has important implications.

5.3 We believe there is a need for a carefully designed review of the effectiveness of the Trust's services to those registered. This is entirely in line with current professional and public debate on community care. ‘Needs-led' assessments, such as the one we are recommending, lie at the very heart of the community care philosophy50. We believe that such a review must be predominantly qualitative in nature, and could build upon the existing quantitative data held by the Trust. Our reasons for stressing the need for qualitative work are primarily two-fold:

a) the extreme confidentiality of the subject matter, and the importance of using highly experienced and sensitively trained social researchers to develop a reliable survey design and interview method,

b) the virtual impossibility of obtaining reliable data on needs from a purely quantitative approach There are a number of reputable survey organisations [for example Social and Community Planning Research (SCPR)] with specific experience and training in undertaking sensitive work with particular client groups.

RECOMMENDATION TWO:

The Macfarlane Trust should explore ways of undertaking a thorough evaluation of their current provision of services. In addition, they should obtain detailed costings of the qualitative survey work required in order to develop a needs-led service for their client group. This will require additional funding from Government, and discussions towards this end should be begun as a matter of urgency.

5.4 We would like these recommendations – addressed to the Macfarlane Trust – to be taken up independently of the project proposal that follows.

6. Extension of local mutual-support activities

6.1 Earlier sections highlighted the necessity for mutual-support groups to diversify their activities in order to grow and survive. The Birchgrove Grove and its regional co-ordinators have been exploring the possibility of other initiatives:

* a telephone support network – ideally this could build on existing networks and tap in to the other schemes; volunteers would need some professional training in telephone skills if this is to be of more than merely local use

* an occasional newsletter by and for HIV haemophiliacs; to include topics that are currently at issue, personal experiences and knowledge gained from living with the virus. While this would remain a volunteer-coordinated effort, additional funding in order to help production and printing costs would needed.

* a list of sympathetic complementary therapists is to be drawn up. This may require some desk and telephone research, although we have enlisted the help of members of the Immune Development Trust in collating an initial list. This would be a similar exercise to the information put out by the Whole Person Therapy Trust, who offer a range of complementary therapies aimed at people in Kent. Again, financial and occasional staff resources would greatly improve both the scope of this exercise, and its presentation.

* volunteer training and awareness in HIV and haemophilia issues – this would be aimed particularly at those involved in caring for people with the two conditions. Birchgrove is working on a module around this issue at the moment. Naturally, funding and some assistance would both hasten the exercise and get the package more rapidly to those who need it most.

6.2 The Birchgrove Group has been working on these initiatives because they are needed, and no other agency appears to be meeting the specific need. This work provokes a certain amount of what we could call ‘creative tension'. While the Birchgrove Group enjoys this challenge, it should be said that sharing the financial and resource load would also lessen some of the unwanted stress that such projects inevitably bring. Funding and additional resourcing is needed urgently.

RECOMMENDATION THREE:

Organisations involved in service provision and welfare needs of people with HIV should review the content of their training, literature, helplines information and other services, to cover the area of haemophilia and HIV.

In addition, they might wish to consider co-operative ventures with groups such as the Birchgrove. While financial provision would be welcomed, offers of help in kind may serve the wider need to establish links between the wider HIV, and haemophilia + HIV communities.

7. A nationally co-ordinated outreach project

7.1 This was outlined in principle in section 4, and some of the identified aims and objectives are indicated in the outline Project Proposal, at Appendix I. We would be seeking, through the appropriate sponsoring agency, funding for three years. This would enable the project to be fully developed, expand the scope of outreach activities, and allow time for proper evaluation to be undertaken.

7.2 There are a range of options that need to be considered before this project is formally submitted for funding – one purpose of this discussion document.

Sponsorship

7.3 Which agency or organisation is best suited, or most able, to act as sponsor for the project? The options range from the national Haemophilia Society, the major HIV/AIDS charities such as Terrence Higgins Trust (THT) and Body Positive, the regional organisation of National Health Service AIDS Co-ordinating Teams (ACTs), the various Haemophilia Centres, or even sited within an University department of medicine, such as a Department of General Practice.

Charities are best placed to apply for trust funding from the larger grant-giving bodies, and are probably in closer contact with the needs of those they serve. On the other hand, NHS sponsorship might give access to the NHS Research & Development funds; Haemophilia Centres have both advantages and drawbacks, not the least of which is the danger of the mutual-support initiative becoming overly ‘medicalised'. A university-sited co-ordinator could ensure high quality research and evaluation, and would ensure that the findings of the project were well disseminated and taken up. The dangers of remoteness and over-medicalisation would have to be addressed.

Our major aim is to get the project on the road, through the energy and assistance of a highly committed and sympathetic sponsoring agency. As yet we do not have sufficient information on the necessary management and funding structures of all these organisations, for an unequivocal choice.

RECOMMENDATION FOUR:

Agencies and organisations committed to service provision in the area of HIV/AIDS and that of haemophilia+HIV should set up a small working group to address how such a project could best be facilitated. Membership of this group should include individuals with haemophilia and HIV, and/or their representatives; academic researchers working on community-based service provision issues; and an experienced community development worker.

Siting of link-workers

7.4 Similar issues as those outlined above surround the siting of link-workers. However, in this instance we have a clear preference for these workers to be sited within existing HIV/AIDS facilities – perhaps those running local helplines or other community-based services. This serves a number of purposes. It serves to educate the other HIV/AIDS workers about haemophilia (and perhaps even hepatitis C); it boosts communication between community based and national service providers; and it enables the linkworker to have ready access to appropriate psychological (and possibly logistical) support and professional supervision, as required.

RECOMMENDATION FIVE:

Discussions should be begun, as soon as possible, with the national and regional AIDS/HIV service networks on the option of placing a haemophilia + HIV linkworker within their facilities. The mutual benefits of this should be stressed, and options for other collaborative work explored. We believe preliminary work should fall within the remit of the working party described in Recommendation (4).

7.5 Most of the other recommendations we could make are contingent upon the results of this collaborative work. We strongly believe in the urgent need for individuals in position of influence, and the appropriate agencies, to start talking together about meeting the non-financial needs of people with haemophilia and HIV. In the Birchgrove Group we are working as hard and as persistently as we are able. This has already accomplished a great deal. We want to ensure that others like ourselves can benefit from this experience. These goals cannot be reached solely by our own efforts, although we are certainly willing to give it a go. We want your support – and we need it now.

 

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