Fluctuating symptoms of HIV Report.

Tuesday, September 6, 2011

NAT has launched a new report, ‘Fluctuating symptoms of HIV’, which looks at the symptoms experienced by people living with HIV – how they fluctuate over time and how this impacts their daily life.  The report, based on an anonymous survey of people living with HIV, shows how fluctuating symptoms are a cause of real distress and place barriers on work, daily living and social participation. 

The most commonly reported fluctuating symptoms of HIV were fatigue, exhaustion or lack of energy (57%), depression or anxiety (55%), nausea, vomiting and diarrhoea (48%) and insomnia or difficulty sleeping (46%).  The frequency, predictability and duration of symptoms varied greatly among respondents and many people experienced more than one symptom at the same time.

It is essential that the true impact of fluctuation is properly taken into account when assessing the needs of people living with HIV in relation to benefits, social care, and accessing employment.  Benefits assessment, for example, have been severely criticised for their failure to assess fairly those with fluctuating conditions – people living with HIV have suffered as a result.  More clinical and scientific studies are also needed to determine the prevalence of fluctuating symptoms among people living with HIV and how best to manage them. 

Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments:

‘The fluctuating symptoms experienced by people living with HIV are not fully understood or recognised and it is vital that further research be done in this area.  Symptoms such as fatigue, nausea or insomnia are frequently experienced and can be unpredictable; causing real distress and having a debilitating mental and emotional effect on people living with HIV. 

‘One of the biggest issues for people living with HIV who experience fluctuating symptoms is the barrier it places on work and daily life.  NAT is calling for disability and illness related benefits assessments, as well as social care assessments, to fully take into account the range of barriers fluctuating symptoms can present when working and going about other daily activities.’ 

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Notes to the editor:

NAT launched an anonymous online survey of people living with HIV to better understand how those who do have fluctuating symptoms experience these and the impact the symptoms have on their capacity for work and their daily life.

The survey was developed by NAT with input from experts in HIV-related symptoms and side-effects.  265 people participated in the survey in the space of a month.  The full list of survey questions can be found at the end of the report.

Click here to download the full report.

For further information please contact:
Sarah Radcliffe
Senior Policy & Campaigns Officer
020 7814 6767

NAT (National AIDS Trust) is the UK’s leading charity dedicated to transforming society’s response to HIV. We provide fresh thinking, expert advice and practical resources. We campaign for change.

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