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HIV and mental health: a lesson in communication.

Within the HIV Clinical Nurse Specialist (CNS) team, we are familiar with managing a complex caseload, and mental health issues often arise in our client group. Most common are feelings of acute emotional distress, depression and anxiety. We are often the first to assess the risk of mental distress and observe for its signs and symptoms. We are best placed to do so, as we have often known the client for many years. We have had to develop and maintain the necessary skills to recognise and address mental health problems, in addition to the factors that can be triggers. However, we are HIV specialist nurses and not mental health nurses. We regularly find ourselves expected to be both, and we often are.

This case study highlights the complexities and challenges of managing a HIV-positive individual with mental health issues in the community setting, and the difficulties in creating a collaborative and effective professional relationship with mental health services.


Anne is a 49-year-old Nigerian lady who was referred to the CNS Team. She was diagnosed HIV-positive after being admitted to hospital and subsequently treated for Pneumocystis pneumonia (PCP). Her CD4 cell count was 60 cells/[mm.sup.3] and viral load was 332,314 copies/ml. She was commenced on Atripla prior to discharge home.

Anne is a single mother living with her three teenage children in a three-bed second-floor flat. Prior to her diagnosis, Anne had been working but had accrued debts and was in severe financial difficulties with mortgage arrears. Anne disclosed her diagnosis to her eldest daughter and ex-husband only. Her ex-husband, who lives abroad, arranged testing and was negative as was her eldest daughter. It has recently come to light that Anne's other children were never tested as planned.

Mental health

Anne had no previous mental health history but, 5 days after commencing treatment, she was taken to A&E after her daughter reported inappropriate, bizarre behaviour, wandering and hysteria.

Both psychiatry and HIV teams reviewed Anne, and all blood results were normal, as was an EEG and CT head.

She was diagnosed with acute psychosis secondary to efavirenz, and she remained an inpatient for 1 week, requiring one-to-one supervision, before being transferred to the mental health unit (MHU) under Section 2 of the Mental Health Act. She was switched to Truvada, darunavir and ritonavir.

Anne was followed up by the HIV medical team during her admission to the MHU and was found to have CMV retinitis resulting in significantly reduced sight in one eye.

Transfer to community

Anne remained an inpatient at the MHU for 3 weeks, during which time the CNS team endeavoured to maintain close contact with the mental health service, reiterating the importance of our involvement in discharge planning. The care for those living with HIV and mental health disorders should be a collaborative effort involving patients, primary care and mental health teams [1]. Frustratingly, when we called for an update, we were informed that Anne was being discharged that day and care was being transferred to the Community Mental Health (CMHT) and HIV CNS teams.

Although the HIV CNS team visited Anne while an inpatient, and due to her being mentally unstable previously, we hoped to gain a better insight into Anne's life during the first assessment at her home. Anne's flat was very dark and cluttered; however, she looked well presented. She was quiet and could not maintain eye contact and did not initiate conversation. Her main concern was the number of tablets she was taking. It was agreed with Anne that a dosette box might ease the distress and confusion caused by her perceived high pill burden and that the CNS would refill boxes temporarily with a view to Anne becoming independent in managing this herself.

Anne soon appeared to build up a good rapport with the CNS team, which played a pivotal role in maintaining her adherence. A strong patient-provider relationship, including trust and engagement with the provider, has been associated with improved antiretroviral adherence [2].

Anne was keen to return to work as soon as possible, and in the interim, was allocated a mental health social worker to assist in applying for benefits and act as an advocate in relation to her mortgage arrears. These issues soon became Anne's primary concern as her home was under threat of repossession.

Over the next 3 months, Anne's adherence was good despite her deteriorating eyesight, mental health and financial issues. Anne was also diagnosed as a type 2 diabetic and commenced on metformin. She always attended clinic appointments and her viral load was undetectable with an increasing CD4 cell count of 288 cells/[mm.sup.3].

However, Anne soon required ophthalmic surgery, which was followed by a gruelling regimen of different eye drops several times a day and managing her uncontrolled pain. This, coupled with increasing financial pressure, caused Anne to become very low in mood. The CNS team raised our concerns with the CMHT and agreed to continue monitoring her.

Anne's physical health improved over the coming months and her mental health seemed to follow suit, she was discharged from the CMHT and was no longer requiring psychiatric medication. She also attended a course in the hope of returning to work.

As she continued to improve, her mood was much brighter, as was her flat. Her financial issues were under control and she had a new job. It was suggested to Anne that we would start encouraging her to take control of managing her HIV and medication as she had done so well in other aspects of her life. Anne was enthusiastic about this and proud of how far she had come. The ability to take antiretroviral therapy well and consistently is a key part of self-management [3].

Anne had booked a holiday to Nigeria, and requested we meet on her return in order to teach and assess her in managing her medication.

Once home, I met with Anne and she was very happy and reported having had a wonderful holiday. She reported no problems with her medication and/or adherence while abroad and felt well throughout the 3 weeks away.

Readmission to mental health unit

On her next clinic appointment, it was noted that Anne's viral load had become detectable and she had admitted that she had missed a few doses while on holiday. I decided to discuss this with Anne and arranged to visit.

However, the following day I received a call from Anne who sounded distressed. She was crying, screaming and pleading with me to come to her flat immediately as 'they think I'm mad and they're coming to take me away,' When I asked who she was referring to she said the police and ambulance. Unfortunately, I was unable to get to Anne's so requested she asked them to call me. Within 10 minutes, I received a call from a paramedic. I gave him background information with Anne's consent. I was informed that it was Anne who had called the ambulance and the police and they agreed to take her to the hospital where she had her HIV care. She was subsequently readmitted to the MHU voluntarily. It had been 2 years since her previous admission.

I made contact with the ward and provided a list of Anne's current medications and reiterated the importance of adherence to her antiretroviral therapy. I also requested that I be kept informed of Anne' progress, in particular the discharge planning.

When I visited Anne in the MHU, the deterioration in her mental health was extraordinary. Her mood was manic but she was happy to be there for a 'rest.' She was wearing a very extravagant headpiece labelled 'high prophetess' and she informed me this was the new title she had obtained while in Nigeria. Anne then became distressed, and informed me that the pastor at her church had disclosed her HIV status to the entire congregation and that he and his wife had tried to kill her and had used her urine to make black medicine.

Anne's children were being cared for at home by her daughter. While I was there, Anne continually called her, demanding that she brought her money to send to Africa. It became apparent that Anne had been spending excessively on credit cards and making large purchases, such as plasma TVs. Her financial and debt issues had returned.

Discharge: communication is vital!

The MHU were reminded regularly of my role and the importance of keeping me informed of discharge plans. I also attended ward rounds. However, despite me speaking to the ward one morning and being told there were no discharge plans, Anne was discharged that day, without my knowledge, and without her antiretroviral therapy dosetted. I feel it's fair to say I was completely exasperated by this turn of events and had to change all my appointments and go immediately to Anne's to ensure she had her medication.

The catalogue of poor communication continued. I called Anne's community psychiatric nurse (CPN) to arrange a joint visit and left a message requesting they call me back, but they never did. I continued to try and make contact with the CMHT and, while I was at Anne's flat, I called again and was informed that there was nobody available to speak to me. I mentioned I had left several messages over the previous 2 weeks with no response and was told it would be marked as urgent. There was still no response.

Anne also informed me they were visiting her every other day, rather than the daily visits I was told about. Given Anne's complex physical and psychiatric needs, I found this complete lack of communication surprising and frustrating.

As my visits continued it was clear Anne was becoming increasingly manic. She had set up a 'church' in her living room complete with altar. She looked very well, having had her hair done, and was wearing new clothes. She told me she was making an effort, by wearing false eyelashes, so people did not think she was sick. Anne appeared to have some insight that she had not been well. She told me she had found herself approaching people in the street telling them she was setting up a church and asking them if they wanted 'joy', and when she got home she realised this was not normal behaviour and wondered what was wrong with her.

I made Anne an appointment to see an advocate who could assist her to reapply for benefits as she had recently returned to work. I continued to try and make contact with the CMHT but to no avail.

When I eventually spoke to the CMHT, we arranged to have a joint visit; however, they did not turn up or call to cancel. Anne was crying and appeared very unstable. I spent a long time with her and had concerns about her low mood. Doctors from the CMHT arrived to review Anne. Her behaviour was very unpredictable. She again admitted she never took her antiretroviral therapy while in Nigeria, but took other Nigerian medicines. She also informed me that she had a new husband who would be coming to live with her. Anne said the new husband had cured her HIV and she requested another HIV test to confirm this.

Yet again, her behaviour was increasingly chaotic. A new tenant moved in and her eldest daughter moved out. These changes concerned me, particularly as Anne had no idea what her new tenant was even called. Anne started crying loudly and was talking in 'tongues,' saying she had a vision from God. All of this was now witnessed by the doctors from the CMHT, and they commenced her on additional antipsychotics.

This chance meeting with CMHT doctors allowed me to voice my concerns and discuss my frustrations with their lack of communication, and I was reassured this would not happen in future.

On my next visit to Anne, she refused me entry to her front room and I had to fill her dosette boxes in the hallway. She was manic and having conversations and arguments with 'visions' and kept going into the front room and shouting loudly. She became increasingly agitated with me and at times aggressive towards me, which she had never been before. Anne was shouting about money and how I should get her some. She said the Devil was in her living room and someone in Africa stole [pound sterling]1.5 million from her and she was going to 'punish him through the Devil.'

Anne then said if the CMHT did not bring money when they came to see her that day, she would 'pour boiling water on their faces.' I was extremely frightened and concerned, unsure of what Anne was capable, and I left promptly.

I immediately attempted to call the CMHT to inform them of Anne's threats but they were in a meeting and refused to acknowledge my concerns. This shocked me as I felt that Anne or someone else could be at risk of harm, so I persevered. I contacted the emergency psychiatric service for advice and was put through to an assessment team. I explained my serious concerns and that I was not able to express them to the appropriate team. I was again advised that they were in a meeting at that time and did not like to be disturbed. However, they advised me that I had taken the correct action, and took all the information from me.

Reporting valid concerns took a significant amount of effort and time, and left me feeling as if I were a nuisance, rather than a professional doing my job. I felt it necessary after so many incidents to look in to making a formal complaint.

Later that day I received a message from the MHU advising that Anne had been readmitted. I reiterated the importance of her having her antiretroviral therapy administered daily and on time, and again requested that I be informed of any discharge plans. Yet again, Anne was discharged home without me being informed and without her medications dosetted.

Anne currently remains under the care of both the CMHT and CNS teams, and is at present stable on medication and trying to resolve her debt problems.


Ideally, I would refer to this case study as an isolated and extreme example but unfortunately it is not, there are several. We continue to strive to achieve a professional and effective multidisciplinary approach to managing our many patients living with HIV and mental health issues. We are realistic and understand that resources are limited, but effective communication costs nothing, and can have a significant impact in reaching positive health outcomes and maintaining a patient-centred approach to the care we provide.


[1.] Office of the Medical Director, New York State Department of Health AIDS Institute. Adherence to antiretroviral therapy among HIV-tnlected patients with mental health disorders. Available at: to-antiretroviral-therapy-among-hiv-infected-patients-with-mental-health- disorders (last accessed May 2011).

[2.] Bakken S, Holzemer WL, Brown MA et al. Relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. AIDS Patient Care STDS, 2000, 14, 189-1397.

[3.] Gifford AL, Groessl EJ. Chronic disease self-management and adherence to HIV medications. Journal of Acquired Immune Deficiency Syndromes, 2002, 31 (Suppl 3), S163-S166.

Correspondence to: Nicola Galbraith, Clinical Nurse Specialist, Central London Community Healthcare, 4th Floor, Hammersmith Town Hall Extension, King Street, London W6 9JU, UK (email:

Nicola Galbraith

Clinical Nurse Specialist, Central London Community Healthcare
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Author:Galbraith, Nicola
Publication:HIV Nursing
Article Type:Clinical report
Date:Jun 22, 2011
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