Is there life after death for HIV social care?

HIV specialist social care is in danger of vanishing altogether as a facet of social work in England. Despite improvements in health, changes in the make-up and age of the HIV-positive population mean that their social care needs are greater than ever. Who will meet these in the future? Gus Cairns reports.

On 10 June last year, Eric Pickles, the Secretary of State for Communities and Local Government, announced that the AIDS Support Grant, a ring-fenced £25.5 million given to local authorities (councils) to look after the social care needs of people with HIV, was finally to end. ‘Ring-fencing’ means the money is not supposed to be spent on anything else. Though many had been predicting its demise for years, it was still a shock to providers of HIV social care in England. Would their services – and their jobs – survive?

Due in part to successful lobbying by HIV groups such as NAT (the National AIDS Trust), the government announced that it would still assign a proportion of the general pot of money allocated to local authorities to HIV, and that in fact the money was to be increased to £36.3 million by 2014. But in practice, that’s just making transparent the formula whereby more is allocated to areas of highest prevalence (such as the London Borough of Lambeth, which got £1 million of the AIDS Support Grant last year): councils aren’t bound to spend the money on HIV services.

The social care needs of people with HIV

And yet the social care needs of large numbers of people with HIV are more acute now than they ever were, largely due to shifts in the make-up of the population. A 2008 study in east London¹ found that many people were living in poverty, and a majority unemployed. Hardship was greatest among migrants, but significant numbers of UK-born patients also reported not having enough money to live on.

The survey, of 1687 patients in east London clinics, found that only half of the migrants in the study (largely from sub-Saharan Africa) had secure residency status in the UK and only 45% of black African men and 35% of African women had a job.

In UK-born gay men, there was evidence of poverty in the long-term diagnosed: 80% of gay men diagnosed for less than two years had a job but only 34% of those diagnosed before 1996, in the pre-treatment era.

Forty per cent of black African people reported not having enough money to live on, just under a quarter of ethnic minority gay men, and 10% of white gay men. Poverty was also widespread in the smaller numbers of white and Caribbean heterosexual people. Levels of home ownership were well below the UK average and, although under 2% were homeless, 10% of gay men from minority ethnic groups and 9% of black African heterosexual men and women were ‘sofa surfing’ – staying temporarily with relatives or friends.

I’ve seen things go from difficult to extremely difficult. In particular, we are seeing huge levels of deprivation amongst our African patients. Add the social damage HIV does to people who already have high levels of poverty and insecurity and it turns into a struggle for existence for some. Dr Jane Anderson, Homerton University Hospital

“We found people with HIV in all groups faced social and economic hardship,” said the investigators.

Dr Jane Anderson, chair of the British HIV Association, was one of this study’s co-authors, and is an HIV consultant at the Homerton University Hospital in east London’s Hackney.

“I’ve worked in Homerton for 20 years and I’ve seen things go from difficult to extremely difficult,” she says. “In particular, we are seeing huge levels of deprivation amongst our African patients. Add the social damage HIV does to people who already have high levels of poverty and insecurity and it turns into a struggle for existence for some.”

The links between social deprivation and poor treatment outcomes really need no explaining: how do you adhere to your antiretroviral regimen when you are staying with relatives who (you fear) would throw you out if they knew you had HIV, you have £36 a week from the National Asylum Support Service to survive on, and are suffering from nightmares and panic attacks because of the experiences you ran away from? Such combinations of circumstances are by no means uncommon.

Who should support people who cannot support themselves? Traditionally, at least since the 1970s, that task has fallen to local authorities, and a profession invented to intervene on behalf of the state – that of social worker. Before that, people were supported by a network of voluntary agencies and, inevitably, the needs of the most vulnerable were often unmet.

Social care and social work

Social care was defined by the English Department of Health, in a paper issued during the last government, as “the wide range of services designed to support people in their daily lives and help them play a full part in society. It includes a range of practical services such as home care, day centres and residential and nursing homes. It can include practical assistance to help individuals overcome barriers to inclusion, such as supported entry into work for an individual with a mental health problem or a personal assistant to enable a disabled person to lead a full and active life. It can include support in managing complex relationships and emotional distress.”

However the definition also ended on one key sentence: “Social care includes those services directly commissioned by the local authorities and those services which an individual or family organise and commission themselves.”

This encapsulates a division that has never quite been settled within the social care professions and which has been thrown into more prominence with the Conservatives’ emphasis on ‘big society’ volunteerism at the way forward. In their new Vision for Social Care² they lay increased emphasis on enabling people to employ their own carers and on social care being provided and developed by professionals and carers from a plurality of different disciplines.

Is social care simply to do with responding to people’s needs and helping out the needy? Then maybe this could be provided by charities and the voluntary sector as they are. Or is it about the state’s legally defined obligation to protect the most vulnerable in society – the very old; the sick and dying; children; those with severe mental illness or addictions? If so, it becomes a job involving legal issues, care plans, and all the power and responsibility of a profession representing an arm of the state, implying a very different role for voluntary agencies if they are charged with these tasks.

HIV social care, says Andrew Pearmain, has historically occupied an uneasy hinterland somewhere between the two. Pearmain is a consultant social worker – the profession’s top grade – who is contracted by Essex County Council to manage its specialist HIV social work service, and has done so for a decade.

He makes a distinction between the services offered by voluntary agencies and those that can be offered by properly trained and qualified social workers, perhaps not surprisingly speaking up for the latter.

“Few people outside the profession really understand what social workers do,” he says. “Because we are connected to the state, we have the power to access things for clients that voluntary agencies can’t, or have to do on an ad hoc basis.” He says that voluntary agencies generally do not have legal power to be involved in the hard decisions at the sharp end of social work: child protection, sectioning under the Mental Health Act, end-of-life care and so on, though this is changing slowly. Pearmain says that in many places, because voluntary agencies are the sole providers of social care for the local HIV-positive population and have poor channels of communication with the local authority service, statutory social workers commented that people’s situations were allowed to get worse than they need to before a ‘last resort’ call was made to the local authority team.

Qualified social workers are trained to conduct a sympathetic but rigorous assessment of a client’s needs, and to devise a care plan that meets those needs. They are trained to be empathic to the person’s whole circumstances in a way that healthcare workers, trained mainly to improve only medical outcomes, aren’t always, but to do so in a way that enables the client rather than fostering dependency. The latter has been a charge made of some voluntary sector agencies which, funded by the number of people who come through the door, sometimes kept on providing services past the point they were needed, says Pearmain, such as “drop-ins that only see the same group of old regulars”.

“We are trained to find whatever tiny bit of room for improvement we can find in the client’s circumstances and then help them achieve that if we can,” he says.

The other side of the coin, though, and an approach that increasingly typifies the hard-pressed generic social services some HIV programmes have merged with, is that the rigour and professionalism of assessment turns into a “computer says no” exercise, where clients are sieved through a process designed to deny service to all but the neediest – and even they, once provided with the immediate help they need, have their cases closed and are not given ongoing support.

A system designed to provide short-term respite care after an old lady’s hip operation does not easily meet the complex, long-term, interlocking and fluctuating needs of a recently diagnosed HIV-positive person, who may be an asylum seeker with no residency status, no money to buy decent food, responsibility for a child, bouts of depression and anxiety, and a terror of her status being disclosed to anyone in her community – in addition to still-precarious health. And yet such a client would not meet the criteria for the more specialist and intensive social work support provided to people with severe mental illness, diagnosed addictions or severe disability, or to children in need of protection.

A triage process introduced in the late 1990s sorts the need of applicants applying for local authority support into ‘mild, moderate, substantial and critical’. Pearmain estimates that one-in-ten people diagnosed with HIV in the UK is accessing some form of social care support from statutory and voluntary agencies, but that only one in 100 would be assessed as in ‘substantial’ or ‘critical’ need, now the only criteria to be eligible for generic social work services in most local authorities. Since the public expenditure squeeze started, some authorities have “gone critical”, working only with people in imminent danger of death if denied services.

A patchwork of provision

The heyday of HIV social work was in the 1990s, Pearmain explains, where the combination of an assertive and very distinct client group, gay men with HIV, and workers who themselves were often people personally affected by the virus resulted in the development of a social care service offering high levels of commitment and care to individuals, ongoing case management, and a holistic approach to what people with HIV needed, other than health care, in order to lead what he calls the most “dignified, bearable and rewarding” life they could.

Since then, despite the AIDS Support Grant rising each year under New Labour, HIV specialist social work services run by local authorities have tended to shrink, be absorbed into generic social care, or disappear altogether, with local authorities funding voluntary agencies to do the social work.

Despite this, when in 2008 NAT conducted a review of the AIDS Support Grant (ASG),³ they concluded that the need for social care for people with HIV was greater than ever, and that the grant should continue to be ring-fenced. It praised the open-access nature of HIV social care and praised the innovative partnerships formed between statutory and voluntary agencies in some areas. But it also found that half of all local authorities conducted no needs assessments to decide how to allocate the grant and that there was no reporting of, or accountability for, how it actually had been spent.

Although tales of the ASG being entirely diverted into general social work, or even into council car parks, were fewer than in the early days of the grant, many local authorities had either subsumed HIV social care into the generic service or had used the money to support voluntary agencies without ensuring that they provided services with the professionalism, rigour and fairness that they should.

Following the NAT review, Pearmain undertook an in-depth review of HIV social care provision in 16 local authorities in England, writing his own report, the findings of which were also presented to the last BHIVA (British HIV Association) Conference in April.^4,5 He chose only those ones where some form of HIV specialist social care survived, and warns that the situation may be even bleaker in other parts of England.

The statutory service, he found, had dwindled to a core of around 86 HIV specialist social workers in England. However, these 86 workers are supporting around 3000 people with HIV and - if you include those in recent and imminent need, help up to 9000 people. Most HIV social workers have an ‘open’ caseload of around 30, including between five and ten ‘active’ cases at any one time, and around 70 more who have recently had or will soon need support.

Few people outside the profession really understand what social workers do. We are trained to find whatever tiny bit of room for improvement we can find in the client's circumstances and then help them achieve that if we can. Andrew Pearmain, consultant social worker

Despite the original intention of the AIDS Support Grant, which was to standardise state social care for people with HIV, Pearmain found that services and structures varied hugely across the country. In some areas, such as his own Essex and Brighton, HIV specialist social work teams are maintained. He’s particularly impressed by Brighton, which offers, he says, a “professional, dedicated and consistent service, but quite hard-nosed because they’ve heard all the sob stories”.

In other areas, however, there is no provision, or it’s all done by generic social care teams, HIV voluntary agencies or in part by generic voluntary agencies like the Citizens Advice Bureau. This is the case in the inner London authorities, says Pearmain, which “got out of local authority HIV social work before anywhere else”.

Provision by generic and voluntary agencies does not necessarily imply poor service. Well-funded and professional voluntary organisations can provide valuable coverage, especially if they have good contacts with statutory services. The worst examples of provision Pearmain saw were in areas which continued to operate local authority HIV social care but where it was done poorly. He especially criticises the situation illustrated in one council, where “they give a grudging amount of money to one voluntary agency but the HIV social workers are stuck up in an office [in a local hospital]”. Now this hospital has a well-respected HIV clinic, but in this situation hospital social workers can become very limited and demoralised in the work they do, he says, because they are constantly subject to the demands of medical staff, who mainly see social workers as arrangers of ‘beds and benefits’ for inpatients who need to be moved on to free up space.

On the other hand, he lavishes his highest praise for one local authority where the HIV social worker was based at the local HIV clinic but was funded and managed by the local authority team, and had an explicit remit to care-plan for the non-medical support needs of all eligible clinic patients.

Faced with the demise of the AIDS Support Grant, Pearmain says, HIV specialist social care is likely to be squeezed out of the system even more, and voluntary agencies will face loss of funding in the areas where the AIDS Support Grant was largely spent on them, though it’s more a question of the political will of the local authority to maintain HIV social services than of any inevitable decline. Essex got a ‘Letter of Indication’ from the Department of Health pointing out that £350,000 of the council’s block grant was still allocated for HIV services “and our accountants said ‘That’s fine, that’s all we need to continue to support the present service.’”

One promising development in this gloomy picture is ‘direct payments’. The New Labour government expanded a scheme where people with disability and social care needs could be given budgets to employ their own support workers. Although, as yet, it is not known whether the coalition government will take its axe to this scheme, it is thought likely to survive in at least a slimmed-down form. Direct payments allow people with conditions such as HIV to select services and carers appropriate to their needs rather than have to accept whatever the local authority allocates to them. 

One clinic's solution

Faced with huge and increasing patient need, eating into medical time as doctors and nurses found themselves writing letters to immigration lawyers and benefit agencies, Homerton University Hospital devised a solution, by fundraising for and appointing its own Social Care Co-ordinator. Matt Wills has recently completed the first year of a five-year post, thanks to the private money of cosmetics and supermarkets, namely the MAC AIDS Fund and the Monument Trust (one of the charitable trusts of Sainsbury’s).

An ex-advice worker for Staffordshire Buddies, Matt moved to London specifically to take up his “dream job – the beauty of this post is that I have the freedom to design the role”. Although on occasions he does directly intervene (“in simple but urgent cases it’s sometimes easier to resolve things with one phone call”), he is primarily a referral agent, assessing patients’ social care needs and sending them to any appropriate voluntary agencies. Chief amongst these are Positive East, Positively UK, Body & Soul, and the Food Chain for the high proportion of people with nutritional deficiencies due to trying to survive on low incomes, food vouchers (or nothing). These agencies, in turn, will refer to more specialised services such as immigration lawyers. He also refers to the psychiatric liaison services; there is a high frequency of depression, anxiety and mental trauma amongst the Homerton patients, often due to a build-up of intolerable life circumstances rather than any pre-existing psychiatric problems.

[People with HIV] are scared to approach non-HIV services like Citizens Advice Bureaux because they're frightened to disclose and don't trust workers will understand. Matt Wills, Social Care Co-ordinator, Homerton University Hospital

He only occasionally finds himself referring to local authority social services, although he has done so in some cases of child protection and of patients needing convalescent care.

A questionnaire was sent out to healthcare staff at the hospital, to the voluntary agencies, and to the patients themselves, after the first year of the service and the findings presented at the BHIVA Conference in April.⁶

Most of the healthcare staff said that, since the Social Care Co-ordinator post had been in place, more time had been freed up for medical consultations, while over half of them said patients were more engaged in their medical care and that there had been improved clinical outcomes. The voluntary agencies said they had seen an increase in referrals to them, but alongside this an increase in the appropriateness of those referrals, so they weren’t wasting time sending clients elsewhere. And patients expressed high levels of satisfaction and trust in the service.

The main issues presented by the patients were, in this order of frequency: housing; immigration; finances; benefits; and social isolation.

A ‘before and after’ questionnaire found that, before the start of the service, 10% of patients found difficulty in adhering to their medications, but after the first year of service that was down to 2.5%. The proportion of patients saying they had problems in other areas also decreased: attending appointments (12% before, 7.5% after); eating well (from 23 to 8%); paying bills (13 to 7%); poor mental health (30 to 13%); talking to others and socialising (20 to 5%); and work or study (17 to 9%).

NELNET, the network of HIV clinics in north-east London, has expressed an interest in adopting the Homerton model, and Matt has received queries from many areas of the UK by agencies which are also investigating this possible model.

Other models

The Homerton’s approach is not the only model of provision of clinic-based social care. The neighbouring London boroughs of Camden and Islington stopped providing HIV social care within a specialist team earlier than almost any other local authority in England, offering social care through general teams, with some services contracted instead to the local Citizens Advice Bureau. Dr Mike Youle, HIV consultant at Camden’s Royal Free hospital, comments that “We have the CAB come into our clinic and I have to say they are very good, and bring services to where the patient feels safer.” Such services, however, depend crucially not only on adequate funding, but on there being a core of skilled HIV-experienced workers who can offer the service.

One innovative approach has been adopted in the community services based in Peterborough, a city still with a specialist HIV social work service.

Peterborough, an immigration dispersal area, has seen a big increase in its HIV-positive population in the last few years, including some cases among EU immigrant agricultural workers.

Peterborough’s Community Services, part of NHS Peterborough, has a charitable fund. The money is raised through coffee mornings, at World AIDS Day activities and pledged monthly by members of the public. It is spent on supporting expenses HIV-positive people incur in retraining, volunteering, and going back to work.

Maureen Adams, the HIV social care team manager, said: “So far two people have taken law degrees, two social work degrees and we have supported three people to become nurses and one a teacher.” People have also trained as bricklayers, computer operators and nursery nurses.

Another initiative allows HIV-positive people with significant social care needs to meet other people with HIV who they can employ as carers through the direct payments scheme.

The team run coffee mornings during which potential carers and employers can meet each other. In these relationships, whether formalised as an employer and carer relationship or left as an informal relationship, the employer gets someone who understands HIV and the positive person gets employment as a carer, when an agency might question their health.

This is a practical way of getting round stigma; if it’s a formal arrangement, the individual with a carer role can use it in their CV when approaching care agencies for work.

Conclusion

Trust is key for HIV patients accessing social care. Matt says: “They are scared to approach non-HIV services like the Citizens Advice Bureaux because they’re frightened to disclose and don’t trust workers will understand,” while Jane Anderson comments that “HIV clinics are the one front door many patients are prepared to walk through.”

Andrew Pearmain concurs and says that, although basing social workers in clinics is not necessarily a guarantee of good care, “the front door of local authority generic social services is one [clients] will continue to be wary of, and they will access care via the back door of HIV specialist services wherever it’s at all possible to do so”. In his book he cites a voluntary worker who talks of the reward of supporting asylum seekers who arrive as destitute immigrants, afraid to disclose to anyone, as they become people who achieve residency status, go on courses and get good jobs.

Without their social care needs being taken care of, people with HIV with the greatest needs will at best struggle harder to get the help they need and at worst remain the invisible underclass of the HIV-positive population.

Help and advice

As this article has illustrated, social care is provided in very different ways in different parts of the country. To find out what’s available in your area, start by phoning THT Direct on 0808 802 1221 (10am to 10pm weekdays, 12 to 6pm weekends) or search NAM’s e-atlas. Your local authority or local NHS trust’s website will also often list services for people with HIV.