HIV specialist social workers and their importance

HIV specialist social workers are vital in supporting the client group but, as their posts are cut, generic practitioners will have to learn how to emulate them. Natalie Valios reports

“Paul was fantastically supportive; he helped us with disability and housing benefits and would come over whenever we called him.” Max* is describing the input of Buckinghamshire Council senior specialist social worker Paul Elfick who worked with him and his partner, Michael*, after they were diagnosed HIV-positive in 2007.

While Max has been on daily medication and has stayed well since, Michael could not tolerate the drugs or swallow tablets, and was, says Max, “an exceptionally difficult patient”.

“Paul tried many avenues, including offering psychological help, but Michael wouldn’t accept it. He regularly visited us at home and would talk to Michael about how he was feeling and whether there was anything he could do to help. He visited Michael in hospital which he appreciated.”

When Michael died in January 2010, Elfick attended the funeral. “He has provided me with emotional support since then,” says Max, “particularly around the fact that I don’t feel I can tell my children about my diagnosis. It would be dreadful if someone like Paul lost their job because you would have to deal with people who have no special knowledge of HIV.”

But, according to a recent report from the National Aids Trust, this is exactly what is happening. It revealed that financial pressures, exacerbated by HIV social care funding losing its ring-fencing, are driving some local authorities to cut specialist social worker roles and move clients to generic teams instead.

“Specialist social workers’ knowledge is unparalleled,” says Laura Dunkeyson, senior policy and parliamentary officer at NAT. “They are aware of the stress and challenges that people with HIV face – dealing with the diagnosis; starting and changing treatment; the often ensuing mental health problems; fluctuating symptoms; and understanding how this all fits together.

“Service users are concerned about confidentiality and are fearful that if their diagnosis comes out they could lose their job, their home, their family and friends. Generic social workers won’t always understand that fear of stigma.”

This is backed up by a report, Feast to Famine?, written in a personal capacity last year by Andrew Pearmain, HIV consultant practitioner at Essex Council. About 60,000 people have been diagnosed with HIV/Aids in England, of whom Pearmain said 15% received some level of statutory social care. He estimated that there were about 86 HIV specialist social workers in England – although Elfick knows of at least five local authorities that have since pulled funding from the post. Pearmain’s research reveals that in two local authorities where adult social care was provided by an integrated generic service, they were not working with anyone with HIV/Aids.

“Local authorities need to think of innovative ways to harness specialist social workers’ skills, perhaps by using them to train generic workers while retaining them to deal with more complex cases,” adds Dunkeyson. “We have to protect those who are left before we lose this valuable set of professionals.”

* Names have been changed

Social worker’s specialist input

Buckinghamshire Council has one senior specialist social worker supporting people with HIV. Paul Elfick (pictured), who is attached to the generic complex long-term team, hotdesks. He splits most of his time between two sexual health clinics in Aylesbury and High Wycombe, where he sees clients and has weekly team meetings with the staff there. The rest of his week is filled with home visits, assessments and reviews, and attending the drop-in run by voluntary organisation the Crescent Support Group, which works closely with him.

Elfick has a caseload of about 30 at any one time and deals with about 10 complex cases on a weekly basis. He has been working with the Crescent since 2005 and has devised a “traffic light” coding system.

“Because there is such a high caseload I can’t make contact with everyone all the time, so critical clients are given a red light and I ask the Crescent to contact them on a weekly basis, either by phone or a home visit – we have 10 on red at the moment. They will flag up any important issues that need my attention. Those with an amber light are contacted by the Crescent once a month and those with a green light every six months, but I reassess them if their needs change.”

A current case illustrates the complex situations Elfick regularly deals with. “I’ve been working with a 22-year-old man for over two years. He is alcohol dependent, has been living temporarily in a B&B since February and has a chaotic life. He has alcohol-induced seizures and in the time I’ve known him has been in A&E more than 200 times. He also has mild learning disabilities.

“I have liaised with the drug and alcohol clinic; I’ve got learning disability services and a psychiatrist involved; and I’m talking to the community mental health team. I’ve carried out risk and safeguarding assessments because he will have unprotected sex when he’s been drinking so there is a risk of infection.”

Elfick has created a timetable for his client, which includes attending the drug and alcohol clinic, seeing him and the Crescent workers on an outreach basis, and looking for voluntary work to get something positive into his day. He has also been working hard to sort out his housing and has finally found a supported housing place.

Most of Elfick’s referrals come from the two clinics, mainly because of problems with housing, finance, immigration, and support with the diagnosis.

“There are a cluster of issues that people with HIV have to handle,” he says. “A generic worker might assess, signpost, put in services and close the case. A specialist social worker is more aware of the prejudices, stigma and homophobia they face in everyday life. We will work with them long term, and give them emotional support – that is one of the cruxes of our job.”

Practice tips

● Access an HIV awareness training course to gain a basic understanding of the issues people living with HIV face.

● HIV-related stigma and discrimination mean that many people are not open about their status, even with their family and GP. It is important you reassure your clients that you understand how important confidentiality is and that you will not disclose their status without their consent.

● If people do not take their medication consistently it can have serious consequences for their long-term health. Ask your clients how they are managing their treatments, including whether they have problems taking them regularly or have missed doses.

● Be aware that people living with HIV often experience significant fluctuations in their symptoms. These symptoms can be physically and mentally debilitating.

● People with HIV often experience psychological and emotional distress. It is vital that you monitor your clients’ mental well-being regularly.

● People with HIV often experience high levels of poverty and have complex needs. It is important that you refer them to experts to help them with these specific issues. Make yourself aware of local voluntary sector HIV support organisations, the services they provide and how people can access them.

● One of the most important elements of support that you can provide is active listening. People with HIV often experience emotional distress and listening to what the individual is saying and responding in a way they find supportive can make all the difference.

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This article is published in the 1 September 2011 edition of Community Care under the headline “Specialist HIV workers: Vital but under threat”