A chance to dream

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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Emmeline Ravilious discovers what the Sussex Beacon and EJAF are doing about sleep disorders.

What have people with HIV consistently cited as one of the top three problems they have to deal with in life?

Glossary

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe.

insomnia

Sleeplessness.

depression

A mental health problem causing long-lasting low mood that interferes with everyday life.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

The answer is sleep deprivation. In both of Sigma Research’s What Do You Need? surveys, sleep problems were the third-most frequent problem, experienced by a third of people in 2002 and 37% by 2008.1,2 In both surveys, the number-one problem has been sex, which is probably a coverall for issues ranging from impotence and body image to worries about disclosure and rejection. In 2002, the number-two problems were anxiety and depression, with self-confidence as number four; in 2008 these had swapped places.

But sleep kept its place, and this normally meant insomnia or waking up too early. Sleeping is not just a problem in the UK: an American survey found that no fewer than 73% of people with HIV qualified as poor sleepers.3

There are physical reasons for poor sleep in people with HIV. The surface shell of HIV acts as a nerve toxin in itself, producing disrupted and shallow sleep and increasing the amount of dreaming sleep.4 But HIV drugs can do this too, most notoriously efavirenz (Sustiva). Vivid dreams and nightmares are a well-known side-effect of this drug, especially in the first month or so after starting it, and the dizziness it produces in some people during the day may also be caused by sleep deprivation. It appears to cause sleep disturbance in the same way as HIV does itself, by increasing dreaming sleep and reducing refreshing deep sleep.5

Insomnia can be caused by other physical problems ranging from night sweats to muscle aches and itchy skin. But the biggest causes for insomnia are probably anxiety and depression, and this can become a vicious circle: anxiety and depression make you lie awake and worry, but the fatigue the following day can cause more anxiety and difficulty with performing tasks. As Sigma Research comments, “Worry generates insomnia, but insomnia also generates more opportunities to worry.”

The Beacon programme

Given the severity of this problem, it is perhaps surprising it hasn’t often been specifically tackled in HIV medicine before, especially as sleep medications can become addictive.

The Sleep Service programme provided by the Sussex Beacon, a clinical care centre for people with HIV, is an innovative programme for people who have been experiencing longer-term sleeping difficulties. The service aims to help people to regulate their sleeping patterns while, at the same time, reducing their dependence on sleeping tablets - often working with the prescribing doctor to manage this.

Advice from cognitive-behavioural counsellors, together with sleep diaries, allow users to establish a decent sleep regime remarkably quickly – often in just two or three weeks. This not only improves the physical health of the service user, but encourages a positive attitude for a happier, and healthier, future. One service user explains: “Tablets do not offer the same quality of sleep.”

The scheme works hand-in-hand with an Anxiety Management Service, probing those anxieties that may contribute to sleep problems and helping people overcome fears. Nearly 100 people have been through the programme and all of them have been able to stop relying on sleeping tablets.

Worry generates insomnia, but insomnia also generates more opportunities to worry. Sigma Research

Common anxieties addressed in the programme relate to disclosure of HIV status, experience of prejudice and stigma, and settling into a treatment regimen, as well as fears - often ill-founded - that length and quality of life might be cut short. A reliance on sleeping pills, or alcohol and other drugs, can mean many individuals shut off emotionally and physically, at times not taking the anti-HIV drugs that could prolong their lives. Establishing and maintaining a workable sleep pattern helps service users work on issues of self-esteem and to cope with issues as they arise – not just good for them, but for those around them too. As one client says: “It helps to give my partner a good night’s sleep too.”

Nacho, a Beacon client, explains he had become resistant to many of the antiretroviral drugs available and now needs to inject his current drug twice a day, a prospect that he found terrifying. He has managed to overcome his fears with the assistance of Jackie Titley, the head of the Anxiety Management Service.

Jackie explains: “[Counselling] is one of our major services. Whether people have been diagnosed for a long time or are newly diagnosed, all sorts of anxieties can arise – be it from concerns about becoming ill, about the drugs they are taking, or how to tell partners and families. Anxiety can become all-consuming and we help people to realise that they have the coping mechanisms to deal with the anxiety they are feeling.”

Clients have also found the contact with other people with HIV invaluable: from discussions concerning new drugs routines, to making friends and increasing their self-worth.

The Beacon has been providing services for people with HIV for over 15 years, either as inpatients in the ten-bed unit or through day-based health management services. They aim to help people make informed and positive choices about their own health care and treatment. The centre offers a ‘step-in, step-off’ care programme: no doctor’s referral is needed. Service users welcomed the Beacon’s open-minded and flexible approach, with the combination of inpatient and day services. Therapies including acupuncture, aromatherapy, massage and hypnosis are also on offer. Over the years, like many other services, the centre’s focus has shifted from hospice care, to long-term care and services addressing quality of life.

Enduring vision

Very sadly Robert Key, one of the founders of the Elton John AIDS Foundation (EJAF) and, for fifteen years, its Executive Director, died in October following a long battle against myelofibrosis. 

NAM owes particular gratitude to Robert and the Foundation.  This newsletter was, after all, very generously funded by the Foundation over the last three years.  It was EJAF’s support that enabled us to relaunch HTU in 2005, improving its design and reshaping its content to address new and emerging issues facing people with HIV. 

Robert was a wonderfully gentle yet passionate man and on meeting him you were immediately struck by his warmth, modesty and vision.  

It was a vision that permeated the Foundation’s work and one which EJAF is committed to continuing, particularly supporting cutting-edge and relevant services, and responding to the ever-changing needs of people living with HIV.

On these pages you can read about one such innovative service, a sleep clinic, recently opened at the Sussex Beacon.

EJAF is also supporting a major new project that Terrence Higgins Trust is embarking upon, in collaboration with NAM and George House Trust

This will bring face-to-face treatment and health information services to five cities across the UK, closing the all-too-common gap that can appear between clinical and community or social services.   

We will bring you news of this exciting national project as it unfolds.

Caspar Thomson

Executive Director, NAM

References

1. Weatherburn P et al. What do you need? Findings from a national survey of people living with HIV. Sigma Research, 2002. See www.sigmaresearch.org.uk/files/report2002c.pdf

2. Weatherburn P et al. What do you need? 2007-2008: findings from a national survey of people with diagnosed HIV. Sigma Research, 2009 See www.sigmaresearch.org.uk/files/report2009b.pdf

3. Rubinstein ML et al. High prevalence of insomnia in an outpatient population with HIV infection. JAIDS 19(3):260-5, 2008.

4. Gemma C et al. Human immunodeficiency virus glycoproteins 160 and 41 alter sleep and brain temperature of rats. Journal of Neuroimmunology 97(1-2):94-101, 1999.

5. Gallego L et al. Analyzing Sleep Abnormalities in HIV‐Infected Patients Treated with Efavirenz. Clinical Infectious Diseases 8:430–432, 2004.

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