Help when you're troubled: getting the right psychological support

Gus Cairns looks at the new Standards for psychological support for adults living with HIV.

People with HIV have higher rates of depression, anxiety and most other psychological problems than the general population. A large meta-analysis in 2001 showed that people with HIV are about twice as likely to be diagnosed with depression as the general population;¹ a study of UK patients in 2007 found that over two-thirds reported symptoms of depression and over 70% symptoms of anxiety;² and a community survey of people with HIV conducted in 2007-08 found that around 70% of people had issues with depression, anxiety and self-confidence and/or reported difficulties with sleeping or sex.³

In addition, people who already have psychological problems are more likely to have HIV or be at risk of contracting it. A World Health Organization (WHO) report found that HIV prevalence rates in patients with diagnosed psychiatric conditions in the US were between 5 and 23%, compared with a range of 0.3 to 0.4% in the general population over comparable time periods.⁴

It’s good in itself to provide people with HIV with high standards of psychological support: as a report on mental health by the National AIDS Trust (NAT) in 2010 put it, “People living with HIV should not be required to struggle with depression, anxiety, or any other mental or emotional problem alone.”⁵

Emotional problems can also have a direct impact on the physical health of people with HIV. Studies have consistently found that depression is the strongest single predictor of poor adherence to antiretroviral drugs⁶ and that the onset of depression is often accompanied by a drop in adherence.⁷ Some studies have found a direct link between depression and mortality in HIV-positive people not on HIV therapy,⁸ and long-term stress and anxiety have consistently been shown to depress the immune system.⁹

Finally, as numerous studies from places ranging from the US¹⁰ to France,¹¹ Australia¹² and South Africa¹³ attest, anxious and depressed people, with or without HIV, are more likely to have unsafe sex.

With treatments largely maintaining people’s physical health, the emotional burden of living with HIV has become the dominant challenge to many of us. So support, counselling and skilled psychological help should be a standard part of the services available to people with HIV, like tests, pills and referral to experts.

Yet exactly what support services should be provided has never been codified in the UK. This is about to be remedied with a document called Standards for psychological support for adults living with HIV, issued jointly by the British Psychological Society (BPS), the British HIV Association (BHIVA) and the Medical Foundation for AIDS and Sexual Health (MedFASH).

A Cinderella service

Psychological services are often the target of cuts when NHS money is short and tend to be chronically underfunded. They are also sometimes undervalued and may struggle to prove their necessity; there’s a myth that their efficacy is hard to prove.

In fact, taken as a whole, ‘talking therapies’ are extremely effective. On average, psychotherapy has a 60% efficacy in improving symptoms of mental distress,¹⁴ and improvements last for two or more years after therapy is ceased.¹⁵

It is also cost-effective. Depression, according to WHO, is the single largest cause of disability worldwide¹⁶ and contributes significantly to some of the top causes of mortality, including alcohol and drug use and suicide.

HIV is special because it's to do with sex, and mainstream psychologists and psychiatrists still don't have enough training or experience in dealing with sexuality. Stuart Gibson, Clinical psychologist, CASCAID

With HIV, there is evidence that psychotherapy improves mental health and health behaviours like adherence, but also that it directly influences health. Stress reduction techniques have been found to enhance immune function in people with HIV¹⁷ and a meta-review found evidence that psychotherapy can directly improve immune status.¹⁸

Yet standard clinical guidelines still pay little attention to mental health and virtually none has been paid to psychological therapies in HIV treatment guidelines and clinical standards.

The current (2008) BHIVA treatment guidelines say that newly diagnosed patients should have “a psychosocial history taken to identify psychiatric problems, alcohol use and recreational drug use”, but only thereafter mention psychology in connection with reasons to avoid efavirenz (Sustiva), though the next guidelines planned for 2012 will say more. The BHIVA Standards for Clinical Care from 2007 say that HIV outpatient units (secondary care) should have “access to [a] health advisor/counsellor as required” and that HIV centres with inpatients should be able to provide “mental health [services] for patients with significant mental health needs”.

The National AIDS Trust report

Awareness of this gap in the guidelines and of the danger of further fragmentation of inadequate services for people with HIV motivated NAT to convene three focus groups of psychology service users with HIV and an expert meeting.

The resulting 2010 report, Psychological support for people living with HIV,¹⁹ highlighted several issues.

One was the existing fragmentation of mental health services, which cuts were exacerbating. Mental health services in the UK are usually run by health trusts separate from those running primary care and hospitals. Local liaison arrangements and multidisciplinary teams have ensured that patients in need get some kind of joined-up service. But service reconfigurations can mean that, when HIV clinical services ‘migrate’ to another trust, mental health services don’t go with them, necessitating the development - often in a situation of reduced services - of a whole new set of referral arrangements.

Another was that HIV was lagging behind other chronic disease areas in integrating psychological services. The National Institute for Health and Clinical Excellence (NICE) has issued guidance on supportive and palliative care for adults with cancer,²⁰ for example, and on addressing chronic health problems in people who experience depression.²¹

A final point was historical. Psychological problems in people with HIV have not decreased in line with physical problems, not just because the stigma against HIV remains fierce, but because the very nature of living with HIV has changed. Dr Barbara Hedge, a consultant clinical psychologist from St Helen’s and Knowsley Teaching Hospitals in Merseyside, points out that, when HIV was an incurable condition, people would tend to make ‘downward’ comparisons: “I’m glad I’m still alive” or “I’m glad I survived that infection”. Life might be grim but people were glad for every extra day. Now HIV is a condition people live with rather than die from, people tend to make ‘upward’ comparisons with how they think life should be: “I can’t get a relationship” or “I have to take pills that make me tired all the time”.

The NAT report made a number of recommendations. The most significant one in terms of this article is that “relevant professional bodies, such as BPS and BHIVA, should collaborate to... publish standards on psychological support services for people living with HIV” and that “services should be commissioned on the basis of these standards”.

The Standards for psychological support

Liz Shaw is a consultant clinical psychologist in sexual health and HIV at St Ann's Hospital in London, and chaired the group that wrote the Standards for psychological support for adults living with HIV. She says: “It was unanimously agreed at the NAT meeting that we had to take forward a set of standards. There is still a lot of specialist psychological provision in HIV but it’s never been thought through strategically.”

MedFASH undertook the writing and editing of the standards in collaboration with BHIVA and the Faculty for Sexual Health and HIV of the Division of Clinical Psychology at the British Psychological Society (BPS), with input from many other bodies including GPs, NAT, voluntary organisations and service users.

One of the reasons for the standards is to state exactly why HIV should be a specialist area in psychology. “It’s the stigma,” says Liz. “[It] isolates people, and isolation is behind a lot of psychological problems. People with HIV also have to deal with a lot of moral and ethical dilemmas: whether to disclose, for instance.”

Stuart Gibson is a clinical psychologist at CASCAID, a multidisciplinary mental health service for people with HIV in south London, and is also chair of the Faculty for Sexual Health and HIV of the Division of Clinical Psychology at the BPS.

He says: “HIV is special because it’s to do with sex, and mainstream psychologists and psychiatrists still don’t have enough training or experience in dealing with sexuality. As a result I still hear mental health professionals saying things like ‘Well, they just have to tell every sexual partner that they have HIV’, without any understanding of why that might be a hard thing to do.”

I ask whether the mainstream of the BPS had questioned whether HIV presented the need for specialist guidance. Stuart says he is concerned lest the formal adoption of the standards is delayed by bureaucratic processes of approval but adds that “On the whole, the fact that we deal with sex can be used to our advantage. ‘Oh, the HIV people care about that, we can leave it to them’ tends to be the attitude.”

Liz Shaw, however, notes that people with HIV can experience high levels of moderate distress, but they are not more likely than average to have the really severe mental illnesses like schizophrenia and bipolar disorder that can “push them up waiting lists”.

She explains that the Standards are not a set of guidelines that tell practitioners what to do: “They are about what is required to put into place a good level of provision.

“In other words, they are about what needs to be there in order to ensure that wherever a person with HIV enters the system, there will be psychological support.”

Four levels of care

One of the most important aspects of the document is its introduction of a ‘stepped care’ model of provision; it sets out four different levels of need that require four different levels of provision:

1. Information and support
2. Enhanced support
3. HIV-specialist counselling and psychotherapies
4. Specialist psychological and mental health intervention.

Rather than explain in medical terms what these levels mean, it’s probably better to illustrate the different levels of need with these examples.

Level 1 – information and support

Bob is diagnosed with HIV by his GP. He is a balanced and well-resourced person and the diagnosis was not entirely unexpected. He doesn’t want to be counselled but is a bit nonplussed by his GP’s ignorance of some basic questions he has, like the chances of transmitting HIV to others. The GP refers him to the practice nurse who seems a lot more knowledgeable, points him towards information resources (like aidsmap.com) and knows a local support organisation he can attend to meet other people with HIV.

Level 1 is a basic grounding in the psychological impact of HIV. In some ways it’s the most radical part of the document as it says that every healthcare practitioner who’s likely to come across a person with HIV – GPs, practice nurses, peer support and other community workers, social workers, midwives and so on – should understand and have training in the basic psychological aspects of living with HIV, including stigma and confidentiality. At this level, the standard requires enough knowledge and sensitivity to avoid causing harm to people with and affected by HIV, rather than specific psychological skills.

Level 2 – enhanced support

Stella finds her diagnosis during pregnancy harder to come to terms with. She doesn’t blame herself, but has a lot of practical dilemmas and questions, like how to disclose to her present partner, whether she could infect her baby, and whether it will prejudice her residency application. Her low CD4 count also means she should start HIV treatment as soon as she can, but she doubts if she’ll remember to take the pills. She airs her concerns at a peer support group at her local HIV organisation, and accepts an offer of three sessions with a counsellor there to help her explore her options and make decisions about disclosure, condom use and treatment.

Level 2 psychological support is provided by practitioners who have some specific experience of, or expertise in, providing general psychological help to people with HIV. They should be able to conduct a post-test discussion or an exploration of safer sex in a structured way, and be able to assess patients for possible psychological issues that need onward referral. They should be aware that key points in the lives of people with HIV may be especially stressful and should provide psychological screening at these points (which include diagnosis, starting or changing treatment, pregnancy, or experiencing other stressors such as housing or relationship problems). They should also be alert to changes in behaviour such as sudden non-adherence.

Level 3 – HIV-specialist counselling and psychotherapies

Riaz has had HIV for ten years and is on ARV therapy. He has been able to treat HIV as ‘no big deal’ and holds down a good job. Recently, however, after a bout of illness, he found that he had developed drug resistance and his CD4 count had sharply declined. He is put on an effective new combination but, to his own surprise, finds himself suddenly very anxious and depressed, unable to get fears of death out of his head, blaming himself for the drug resistance, and dreading going into work. He mentions this to his HIV doctor, who refers him to a specialist HIV counselling service. After twelve sessions with the counsellor, he feels more settled, and realises that the drug failure had challenged a lifelong belief that he could, and must, deal with everything unaided.

The standards are explicit that level 3 support must be offered “by qualified and registered practitioners in counselling and psychological therapies”. This level is for patients who present with more complex problems, adjustment difficulties, and moderate levels of diagnosable psychological conditions. Practitioners at this level should not only be able to deal with issues such as sexual risk reduction, or substance misuse, but should be able to assess patients for severe problems requiring onward referral. Resources may include specialist support groups as well as individual counselling. Liz Shaw says that the insistence that practitioners at this level must be qualified counsellors is one of the most important aspects of the document: it implies that, somewhere in every HIV centre or local service network, there must be someone whose job title is “HIV specialist counsellor” or equivalent.

Level 4 – specialist psychological and mental health intervention

For Wendy, a recovering injecting drug user, HIV diagnosis feels like a final blow to an already shattered life. The news thrusts her into a profound depression; she can’t eat or sleep yet can hardly get out of bed. She starts having thoughts that the neighbours know her HIV status and has used heroin to calm her fears. She broods on how she might kill herself. A nurse specialist with mental health training spots her major depression the next time Wendy is able to make herself go to the clinic. She refers her to the liaison psychiatrist, who prescribes an antidepressant and sets up some sessions with a specialist trauma therapist. There Wendy is able to start talking about the abuse she suffered as a child, and starts pulling her life back together.

Level 4 covers specialist mental health support provided by psychiatrists, clinical psychologists and specialist psychotherapists. It may or may not be HIV-specific: it depends on local provision but also on how directly the mental health condition and the HIV are bound up with each other.

[The Standards] are about what needs to be there in order to ensure that wherever a person with HIV enters the system, there will be psychological support. Liz Shaw, Consultant clinical psychologist, St Ann's Hospital, London

Stuart Gibson, however, says that providing a specialist team containing experts in both HIV and mental health means that they can sometimes work with people who aren’t being helped by standard mental health provision: “We deal with a lot of people who are difficult characters and who have been diagnosed with personality disorders – meaning that, by definition, psychological support is difficult to provide. But we’ll hold them because we know that, if they don’t engage with the HIV clinic, their health will be at risk.”

A specialist team can help in situations where mental health and substance-misuse problems are bound up with each other, “whereas, in other settings, people tend to get sent to addiction services and told to stop using first before the mental health issues that may have led them to take drugs get sorted out.”

The stigma of mental illness, Stuart adds, means that psychologists have a useful role in explaining patients to other healthcare practitioners. “Doctors can sometimes have this naive expectation that if they tell a patient they must do something to get well, such as take their pills, they’ll go and do it. Psychologists can help to explain why some patients don’t seem to act in their own interest.”

There are tricky areas that practitioners at all four levels need to take into account. One is the ability to listen for indications that the person is at risk of suicide, harming themselves or others.

The other is how to take into account organic and neurological illness, including HIV-related cognitive impairment. Originally the standards were going to exclude neurological problems, but given that dementia and depression, for instance, may imitate each other or coincide, a requirement for cognitive screening is now included. Members of the writing group are pondering if there is still a need for guidelines covering diagnosis and treatment of HIV cognitive impairment.

The standards – currently a 61-page document, though efforts are being made to slim it down – may look daunting to a healthcare practitioner who isn’t a mental health or HIV specialist. One aspect of the recommendations is to identify existing simple, validated, screening tools – standard questions, for instance – that can be used with relatively little advance training and which will at least provide some indication as to who might need onward referral.

The standards are, of course, being implemented at a time when mental health services are being cut back. The service provided by one interviewee for this piece was under threat of a complete funding cut, while the other had experienced 75% cuts to local provision in the last year.

It’s probably not before time that we had, set down in black and white, the range of services that can make living with HIV not just possible – but bearable.

Update 17 November 2011: The published standards document is now available on the British HIV Assocation website: http://www.bhiva.org/StandardsForPsychologicalSupport.aspx