Better Psychological Support Needed

posted: 15/09/2010

People living with HIV are not having their psychological needs met properly, says a new report by NAT (National AIDS Trust).

The report Psychological support for people living with HIV  shows that not getting adequate psychological support can have a severe impact on people's health and well-being. Anxiety, depression and other emotional and mental health problems are all far more common among people with HIV than is usual for people.

NAT says more must be done to give proper support – at present these needs are often overlooked, because the focus is mainly on signs of physical health, like CD4 counts and Viral Load.

People with HIV at George House Trust helped 

People with HIV met at George House Trust to help NAT understand mental and emotional support health needs better, and to talk about the experience of using services.

At George House Trust we gathered black African men and women. Positively Women (now Positively-UK) gathered women, and GMFA gathered a group of gay men. Altogether 32 people talked about emotional and mental health needs and services for people with HIV with workers from NAT. 

Experiences of the immigration system and the impact of these on emotional and mental health were a big issue in Manchester. Women at Positively Women talked a lot about peer support from other women with HIV, and the gay and bi men at GMFA talked about their experience of using mental health services. 
 

There were four main issues leading to the need for support :

• managing HIV - coping with diagnosis, telling others, and coping with the physical effects of HIV and treatment; how poor emotional and mental health affects taking treatments properly; services for older people with mental health problems such as HIV-related dementia
• psycholigical impact of having HIV - anxiety, depression, suicidal thoughts, stigma, low self-esteem, coping by drinking heavily
• managing relationships - telling people, help during a relationship crisis, help with forming relationships, being isolated, bereavement, negotiating safer sex
• the needs of migrants especially asylum seekers - the harm lengthy uncertainty over immigration status causes.

What forms of emotional and mental health support are there?

• HIV support organisations - peer support and meeting with others like yourself is highly valued, where it is available
• HIV clinicians - HIV clinicians rarely ask how people are coping emotionally
• NHS psychological support services - some good experiences but a great deal of frustration about long waiting times, severe cases only being helped, everything has to be strictly HIV-related when many serious issues are indirectly connected
• Counsellors - can be very helpful, but some bad experiences; waiting times and travel costs were problems
• Informal support - from partners, friends, family, community - for gay men this was their main source of support; for women and Africans this can be good or a problem
• Other support - Social Services seen as only for the dying, support from churches can be good or harmful, the internet's potential 

Deborah Jack, Chief Executive of NAT, says:

“People can often find it difficult to come to terms with an HIV diagnosis and deal with the ongoing implications. Psychological support can be as important for the health and well-being of someone living with HIV as going to the doctor or taking treatment. This form of support can be the crucial difference between finding every day a struggle, and feeling able to cope with and enjoy daily life."

"Providing such psychological support is more cost-effective in the long-run as it means that people living with HIV can manage their condition, take treatment properly and stay healthy. It is essential that, at this time of cuts, decisions are not made which may save money in the short-term but will increase the burden on the NHS in the long-run.”

Key findings from the report include:

• Evidence of higher rates of psychological need amongst people living with HIV, compared with the general population
• HIV and mental health problems are both highly stigmatised, and this often makes people even more unwilling to say they are having mental health difficulties
• The psychological needs of people living with HIV are not being met fairly across the whole NHS
• Investing in psychological support for people with HIV has significant benefits in the long-run for individual and public health.

Mark (not his real name), who is living with HIV, spoke about the impact of having a mental health problem:

“They reduce our immunity… If you are carrying so many things in your head there is no way you’re going to cope with your medication. So it comes back to HIV.”

Clinical Benefits

There are clinical reasons why psychological support is beneficial. Research shows the big impact that mental health can have on physical health and how someone copes with having HIV. For example, depression has an effect on how well someone takes HIV treatment properly which is essential. Psychological well-being also influences people’s behaviour, and depressed, anxious and upset people are more likely to have unsafe sex, drink too much and use drugs.
NAT argues that investing in better psychological support for people living with HIV saves money in the long run, not only because people will be healthy for longer, but also because people are then less likely to miss medication or have unsafe sex, and this reduces the risk onward HIV transmission to other people.
 

Psychological Care Standards for HIV
One of the recommendations of the report is that the British Psychological Society and others interested publish standards for psychological support services for people with HIV. The British Psychological Society has formed a working group to prepare these standards, and NAT is a member of this group. For more information about these standards or to order hardcopies of the report contact policyandcampaigns@nat.org.uk.

A copy of the report is going to each HIV clinic in the UK, funded by the drug company Abbott.

“Mental health has become a major focus for Abbott's HIV community engagement. Despite the advances in and access to treatments, many people living with HIV tell us that the psychological burden of the disease significantly compromises their quality of life. NAT's report will help inform all stakeholders about the need to consider the psychological impact of living with HIV on the quality of life and, consequently, health care provisions,” said an Abbott spokesperson.

The report is available here

and to download direct from NAT, with more information on HIV and psychological issues 
 

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