New HIV Mental Health Standards

posted: 08/04/2011

The first standards for mental health services for adults living with HIV are now out for public comments, until the end of May.

The new Standards for psychological support for adults living with HIV  were written by a team of experts, with the help of patients’ representatives and the HIV community sector, including George House Trust, Terrence Higgins Trust and NAT (National AIDS Trust).

The new standards describe the care that adults living with HIV should expect to receive from all the services providing mental health and psychological support, from any time after HIV diagnosis. These are not designed for children and teenagers with HIV, but it is hoped that standards for younger people will soon follow.

Psychological support means ‘any form of support which is aimed at helping people living with HIV to enhance their mental health and their cognitive and emotional wellbeing’. Mental health support comes in lots of different ways and not just from experts.

Many people with receive really valuable support from other people living with HIV – at services such as spaces, groups, weekends, which is known as 'peer support'. Experts like psychologists and other professionals (counsellors, nurses, psychiatrists and others) working in HIV clinics, at doctors surgeries and other clinics, as well as in HIV and other community services, provide more specialist support, treatment and help.

Stepped Care and 9 Standards

The standards follow a four-stage 'Stepped Care' model, to match people's growing psychological support needs, as these get more serious and complex. 

• Standard 1: promotion of mental health and wellbeing
• Standard 2: support at the time of diagnosis
• Standard 3: screening
• Standard 4: competence to provide psychological support
• Standard 5: comprehensive psychological support services
• Standard 6: co-ordination of psychological support
• Standard 7: evidence-based practice
• Standard 8: evaluation and audit
• Standard 9: engagement of people living with HIV
   

Say what you think

Comments on the draft standards are very welcome from anyone with experience (good or bad) of using or providing mental health support for people living with HIV. They’d like people to use their special form for your response. This helps by asking questions, and gives you space for any general comments on the whole standards, and on each of the 9 standards.

The standards should be used by the people deciding what mental health support services for people with HIV are provided in each district and by the people providing those services for checking their services are up to the standards.

The Standards

Please use this consultation response form and send your comments to MedFash by 5.00pm on Tuesday 31st May 2011.

These standards are a joint initiative of the Faculty for HIV & Sexual Health of the Division of Clinical Psychology of the British Psychological Society (BPS), the British HIV Association (BHIVA) and the Medical Foundation for AIDS & Sexual Health (MedFASH).

New Government Mental Health Strategy - No Health Without Mental Health

Five Ways to Well-Being

posted: 07/04/2011

Taking the following five actions in our day-to-day lives boosts our well-being, evidence shows. On the day that the draft standards for better mental health support for people living with HIV are launched, here's some simple steps to feel better and enjoy more of life.

Connect
With the people around you. With family, friends, colleagues and neighbours: at home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.

Be active
Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and that suits your level of mobility and fitness.

Take notice
Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savour the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.

Keep Learning
Try something new. Rediscover an old interest. Sign up for a course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favourite food. Set yourself a challenge you will enjoy achieving. Learning new things will make you more confident, as well as being fun.

Give
Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look outwards, as well as inside your head. Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and it creates connections with the people around you.

Five Ways to Wellbeing, by the Centre for Wellbeing - slide show

draft Psychological Support Standards for adults living with HIV for comments and consultation 

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 
 

HIV+ Mother and Baby Loss

posted: 24/03/2010

The HIV positive mother of a 10 month old baby boy died two days after her own son, who starved to death. The real causes of the mother and baby deaths seem to be the mother’s mental ill-health and HIV stigma, along with missed opportunities and possible failings by health and social care services.
 

The 10-month-old boy wasted away in his pram at his mother's London flat where he was seen at least 15 times, in six months, by nine care professionals. Although experts were concerned about the child's deteriorating health, not enough was done to save the child, because officials and help were turned away by the mother.
 

The baby was found dead, emaciated and surrounded by rotting food on March 8 after a 999 call from his mother's council flat. The post-mortem showed his stomach was empty and he had not eaten for days. He had suffered a 'long period of malnourishment' and his weight had plummeted since Christmas by a third, to 12.5lb.
 

Interpreter refused because of stigma fears

Police began a murder inquiry and his 29-year-old migrant mother was arrested for child neglect. She had avoided contact with care services by saying her human rights would be breached if they used an interpreter to question her - in case the close-knit Eritrean community found out she had HIV. She was allowed to keep both her baby boy and his four-year-old sister.
 

Mum's failing mental health

There were concerns about her parenting skills, she was 'hearing voices' and had expressed fears for her baby's health. After her arrest she was rushed to hospital after only an hour, where she died two days after her son, from a rare brain condition linked to HIV.
 

George House Trust comment
 

This item is based on a Daily Mail news report (the only source we have found) that blamed health and children’s social services for the baby’s death.

We think that the real story is that

• The mother was seriously mentally ill with a rare HIV-related rare brain condition and seems not to have had treatment for this. Her own neglected long-term mental illness caused the child's neglect – like she neglected her own health, dying just two days after her son.
• The mother was very worried by HIV stigma and rejection by the local Eritrean community. So she refused to allow services to use any interpreter because she feared her HIV status would then become known among Eritreans.

There is not enough information to fairly judge whether health and social care services failed, because the Daily Mail's confidential information came from just one of many services that were involved. 

Lessons and issues

However it does appear that there are useful lessons to be learned from holding a multi-agency case review. It's not simply about 'what should have been done to protect her baby boy' but about meeting her own needs for mental health support and treatment. There are difficult ethical dilemmas - like everyone else she has autonomy, the right to decide about her own treatment and care. No-one can force competent adults to have treatment they don't want. But was she able to look after her own health when she was showing significant symptoms of mental distress? And should we use different rules when there is a baby involved? Why wasn't telephone interpretation provided (this would have protected her identity)?

This was a family of three in crisis for some months and only the baby seems to have been of concern - the whole family's situation and needs seem to have been overlooked.  

HIV stigma is dangerous

This is one more case demonstrating why challenging and ending HIV stigma, especially among vulnerable migrant communities, is so important.

Some more detail on the deaths and the events leading up to these

In September 2009, she was rehoused in London after moving from Birmingham after she was beaten up by her partner. A series of visits by health visitors and social workers from Westminster City Council followed. But despite a growing file of evidence that all was not well, nothing was done. The last visit to the flat in St John's Wood was made on March 1. A week later, the boy was dead in his pram. A neighbour said: 'We used to hear her baby and an older child crying all the time. On March 8 my son heard a scream at around seven in the morning.'
 

Two health trusts were responsible for the family. A confidential report by one of the trusts - the Central and North West London NHS Foundation Trust said: 'Post mortem results on the infant showed that he had no food in his gut at all and so had not eaten for several days at least. However, there is evidence of a long period of malnourishment.' But, after a nine-day investigation, the report concluded there are no lessons to be learnt.
 

Michael O'Connor, Westminster City Council's director for children and young people, said: 'Neither of the children were on the child protection register and there is no suggestion that they were at risk.'

Terry Bamford of Westminster's Local Safeguarding Children Board, said an independent serious case review would take place. Central and North West London Trust refused to comment and Imperial College Healthcare NHS Trust said it was carrying out its own inquiry.
 

HIV and Mental Illness - Positive Solutions

posted: 16/11/2009

Stigma often represents the most crucial element effecting people living with a wide range of illnesses. It negatively affects efforts to treat and prevent disease, and adversely affects individuals’ quality of life. The type of stigma varies with different conditions. This article highlights some causes and differences between the stigma associated with mental health compared with HIV, as well as successful strategies of reducing its impact.

Definitions of stigma include

• social identity (deviance from what is normal),
• power discrepancies (that allow discrimination), and
• discrediting attributes that devalue people living with certain illnesses, such as HIV.

Stigma often appears as discrimination, hatred, intolerance, rejection, and exclusion.

Unrecognised internal stigma damages
However what is often under-recognised is the internal aspect of stigma. Internal manifestations can include self-loathing, shame, and self-blame – an intention behind the stigmatising comments and actions. The stigma can spread to others associated with the stigmatised individual or condition – such as family, friends, and even to institutions and clinics. As a result anyone associating with patients, or visiting centres, can be dragged into the net of stigma.

It can be helpful to consider stigma in other conditions so we can understand how it works differently (or the same) in HIV better. The article next considers people living with mental illness. People who have depression, schizophrenia, and other mental illnesses, commonly report stigma from both community and health professionals. Depression and schizophrenia affect millions of people. Of these, only 25% of those with depression, and 50% of those with schizophrenia who are in need of treatment are getting the right treatment. This suggests that stigma, at least in part, may be having an affect on treatment of mental illness. The perception of depression as a weakness rather than an illness; or that people with depression are dangerous, and ‘schizophrenics’ are violent remains deeply embedded in public opinion.

Why are many other conditions NOT stigmatised?
Stigma is far less likely with other common illnesses for example cardiovascular disease. Unlike mental illnesses, cardiovascular disease is less stigmatised at least in part because the causes, disease development and successful treatments are well known.

Does Fear of the Unknown  makes Stigma stick?
The fear of the unknown may be what makes stigma stick to certain illness. This makes people afraid to tell family and friends, and not seek help when they need it. Health staff, even those in mental health can also stigmatise through intensive use of language and labelling. Some healthcare staff show more human empathy and understanding, but some define the person by their illness. The difference in language is powerful – a ‘schizophrenic’, whose behaviour defines them, versus a ‘person living with schizophrenia’, whose illness causes altered behaviour. This labelling may plague the patient as a ‘life sentence,’ reducing self-esteem, withdrawing social opportunities, and creating ongoing employment difficulties, ultimately ruining any chance of normality.

People living with HIV
Many people with HIV across the globe are not on treatment that is needed. One of the biggest issues preventing treatment uptake is stigma. However, the stigma signature associated with people living with HIV is different to that explained for mental illness.

Bos and colleauges suggest how stigmatisation of people living with HIV works. They describe how

• perceived contagiousness (everyday contact, not just sex),
• perceived seriousness (life-threatening),
• personal responsibility (unsafe sex) and
• norm-violating behaviour (e.g. male-to-male sex, and intravenous drug use)

all contribute to increase fear and anger, while decreasing pity for people living with HIV.

Stigma also surrounds certain groups at increased risk, such as

• homosexuals,
• intravenous drug users,
• migrants, and
• sex-workers.

This further stigmatises people living with HIV leading to yet more discrimination and negative social responses. As a result, people living with HIV have a lower quality of life and are less likely to test, get treated, seek advice, information and counselling, or disclose their status to people who could help with support. This can result in late diagnosis with high viral loads, low CD4 counts, and opportunistic infections.

Strategies for Reducing Stigma
The need to deal with stigma is paramount to reducing the HIV epidemic, and increasing treatment uptake.

Accurate knowledge and portrayals of HIV survival and recovery, as well as the true risk to the community from HIV needs to be thoroughly promoted especially in the media.

Telling others helps
Public disclosure of HIV status helps both the individual and the surrounding community. Individuals are often very scared and describe this as the most difficult and dangerous thing to do. After telling people feel empowered, released from a heavy secret, and less isolated and withdrawn, taking back control of their lives.

To help facilitate this appropriate training and support needs to be given before disclosing to prepare for potential negative reactions from people. However, public speaking regarding one’s positive living helps to make the community more aware and dispel myths around HIV, thus reducing stigma. This is echoed by studies involving public speaking by people living with HIV and mental illness, which have shown improved attitudes among high school students to those living with the illness.

One Voice
Uniting all people with stigmatised illness would provide a voice that would be far too loud to ignore.

Access to relevant treatment that communities understand is effective and essential in any stigma reduction programme. Universal access to HIV therapy in Botswana (which has the 2nd highest prevalence), implemented in 2002, provides clear evidence of reducing stigma. Wolfe and colleagues demonstrated pre- and post-implementation that only 31% of people had disclosed positive HIV status to family, and 5% to friends in 2001, compared with 90% and 55% respectively in 2004. Other examples of reduced stigmatising attitudes include an increase in the number of people that would care for a person living with HIV, accept them as a teacher and buy food from a shopkeeper with HIV.

Conclusion
Stigma and its consequences affect the course of illness for many millions of people worldwide. It provides an enormous barrier to all attempts to help people living with stigmatised illnesses. Stigma affects all, it endures, and it compromises survival and recovery of those most in need. We must strive to find new ways to abolish stigma, and thereby allow access to treatment and empowering positive living.

Source with detailed references – full article online free