How social workers are supporting people with HIV and cognitive impairment to regain independence

To mark World AIDS Day, Natalie Valios speaks to social workers at the only hospital in Europe working with patients with HIV-affected neurocognitive disorder about the vital support they provide

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Social workers Isobel Bukalo (left) and Beverley Nelson. Photo: Natalie Valios

HIV/AIDS hit the headlines as a “new” disease back in the 1980s. If you were old enough at the time, you’re unlikely to forget the terrifying government advert that dominated TV ad breaks in 1986 with the word ‘AIDS’ being chiselled onto a tombstone with the strapline ‘Don’t die of ignorance’.

Although it was a bold campaign that got people talking about HIV/AIDS and almost certainly saved lives, it also generated a backlash of fear and stigma, leading to myths that HIV could be ‘caught’ by sitting on a public toilet seat or shaking someone’s hand.

It was Princess Diana who, arguably, brokered one of the biggest changes in public opinion when she began visiting HIV organisations and hospital wards, shaking the hands of people who were dying of AIDS-related illness without wearing gloves.

She first visited Mildmay Mission Hospital in Shoreditch, east London, in 1989 where she was photographed shaking hands with one patient, Martin (see below). The photo went global and had a huge impact, not least reconciling Martin with his estranged mother just before his death.

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Photo: Mildmay Mission Hospital

As the inclusion of ‘mission’ in its name suggests, Mildmay has Christian roots. It is part of the charity Mildmay, which dates back to 1866 when the Reverend William Pennefather and his wife Catherine started working to tackle the cholera epidemic in the east end of London. The hospital itself was opened in 1892.

As a cottage hospital, Mildmay became part of the NHS in 1948, but under Margaret Thatcher’s government it was forced to close in 1982 when these hospitals were deemed uneconomical. Then, as the world became gripped by fear about AIDS, Mildmay was given approval to reopen in 1988 as Europe’s first hospice caring for people dying of AIDS-related illness, despite a huge local outcry.

Beverley Nelson, one of Mildmay’s two social workers, lives locally and can still clearly remember the furore about “AIDS people” caused by the reopening.

Now on its third site (built on the land where the original Victorian hospital stood), the hospital in its latest incarnation was officially opened at the end of 2015 by Prince Harry, continuing in his mother’s footsteps to raise awareness and dispel stigma.

Shift of resources

But, during this time, it has gone from being an NHS hospital to a charitable one, an indicator of the times. In the 1980s, money was being thrown at HIV charities and up until 2009 grants were available to health and social care providers specifically for HIV.

Now HIV is managed in much the same way as any other long-term health condition, says Nelson. The result, she says, is a shift of resource away from specialist treatment, specialist nurses and social work teams, diminishing knowledge and experienced-based specialisms of those who understand the complexities of HIV from a medical and social perspective.

“You have to know HIV from a medical perspective to be able to look at the possible trajectory of the disease and therefore its implications on any one individual,” she adds.

If social work is to be about pre-emptive work, then knowledge of the field is vital.

“HIV is not a one size fits all, especially in the area of cognitive impairment which can produce such varied responses in patients.”

Advances in antiretroviral drugs has led Mildmay to change its focus from end-of-life care to specialised rehabilitation. It is now Europe’s only centre dedicated to rehabilitating people living with HIV-associated neurocognitive disorder (see box).

HIV-associated neurocognitive disorder

In its factsheet on rarer causes of dementia Alzheimer’s Society explains HIV-associated neurocognitive disorder (HAND) and names Mildmay Hospital as an organisation that works with people affected by this condition. It says:

Neurocognitive disorders in people with HIV may be caused by the virus directly damaging the brain. They may also be the result of a weakened immune system enabling infections and cancers to attack the brain.

Symptoms may include problems with short-term memory, learning, speed of thinking, difficulties with concentration and decision making, unsteadiness and mood changes. People may also have problems with their sense of smell.

HIV is easily overlooked as a possible cause of dementia. Even when someone is known to have HIV infection, cognitive impairment can sometimes be difficult to diagnose. This is because the symptoms are similar to those of other conditions, such as depression.

Before the use of antiretroviral drugs, about 20-30% of people with advanced HIV infection previously developed dementia. This figure has now decreased to about 2%.

Treatment with a combination of at least three antiretroviral drugs often prevents cognitive impairments worsening and, for many people, can reverse the cognitive damage caused by HIV. Rehabilitation programmes may also help people with HAND to re-learn skills.

The hospital has 26 beds – all single rooms with ensuite bathrooms – over two wards (Catherine Ward and William Ward, named after its founders) on two floors. Each ward has a communal lounge, kitchen, and assisted bathroom.

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Photo: Natalie Valios

Mildmay is staffed by a multi-disciplinary team (MDT) comprising two social workers; a medical consultant; doctors; physiotherapist; occupational therapist; neuropsychologist; a nursing team and rehabilitation assistants; speech and language therapist; dietitian; admissions co-ordinator; and a chaplaincy service. Volunteers also offer a befriending service.

The hospital has rolling contracts with about 20 London boroughs and the majority of referrals come from local hospital acute centres, although it does accept referrals from all over the country as long as they are funded by the relevant clinical commissioning group (CCG). Community nurse specialists (CNS) in the London boroughs decide whether a patient is referred to Mildmay and the length of their stay, as they are the ones who apply for CCG funding. Where there is no CNS, CCG commissioners can request an admission.

To be eligible, patients must be 18+ and have a confirmed diagnosis of HIV and a level of associated neurocognitive disorder, which commonly leads to confusion, behavioural changes, personality changes, sexual disinhibition, and depression.

Focus on rehabilitation

As a rehabilitation centre, the focus is firmly on supporting patients to increase their independence by helping them improve daily living skills. There are also day services which help to maintain people’s health, keeping them stable and out of hospital. This service is used by patients and those living in the community (the latter are often patients who have been discharged but continue to need support). It has several components including:

  • An occupational therapy assessment room with a fully fitted kitchen and bathroom to assess skills.
  • A physiotherapy gym with a range of equipment including exercise bikes, running machines and gym balls. As about three-quarters of patients have mobility issues, physio sessions are daily.
  • A laundry room to encourage patients to do their washing and if they aren’t able to, they are supported with this task.
  • A communal dining room and kitchens with an in-house catering team who cook fresh food every day with a choice of menu.
  • A digital inclusion suite funded by the charity Wandsworth Oasis offering training in computer skills.

The day service also offers a range of opportunities from trips to places of the patients’ choice, yoga, massage, and a discussion group, to art, music and horticultural therapy.

All activities work to promote skills including fine and gross motor skills; hand-eye co-ordination; literacy; orientation; social interaction; memory; decision-making and planning; road safety; money management; problem solving; executive function; food preparation; speech and language. The results speak for themselves: 80% of patients are able to return to independent living at discharge, as neurocognitive impairment can be reversed to some degree with the right combination of antiretroviral drugs and rehabilitation. The hospital is rated as outstanding by the Care Quality Commission.

Within a few days of admission, patients’ care needs are assessed and a key worker is appointed from the MDT. Capacity assessments are often necessary and there are currently eight patients on the Deprivation of Liberty Safeguards.

Their care and rehabilitation are planned, involving the MDT, the patient and the referrer. Patients are encouraged to set their own goals and work towards the rehabilitation outcomes they have identified as being important. A weekly MDT meeting (held in the Diana, Princess of Wales Board Room) discusses each patient and a psychiatrist from and funded by The Royal London Hospital nearby comes in once a week to check on patients’ psychiatric needs.

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Photo: Natalie Valios

On average, patients stay for four to 12 weeks, but if at the end of the time the MDT doesn’t feel that they have made enough progress to be discharged, an extended discharge is negotiated between Mildmay’s admissions co-ordinator and the relevant CNS.

At the time of discharge, some patients can go straight back home, others may need a six-week rehab package, or a care package; while others will need residential/nursing care.

Patients can also be referred to Mildmay for palliative/end-of-life care (in which case the admission is open-ended), as well as for respite care, says Nelson’s jobshare Isobel Bukalo. “Even if the HIV is controlled but they are at emotional risk because of stress or social isolation, they can come here for respite. Sometimes it’s because they are changing medication and they come here to get more stabilised on a new regime; or they might have a drug and/or alcohol dependency so need support.”

Social work role

Social work input is an integral part of the Mildmay ethos. Nelson works Monday to Thursday and Bukalo on Wednesdays and Fridays. They have been at Mildmay for seven and 13 years respectively and both have solid social work backgrounds in various disciplines including older people’s services and palliative care (Nelson) and working with drug dependent families, in child protection and at an HIV drop-in centre (Bukalo).

The pair provide essential support dealing with issues both inside and outside the hospital, from help with benefits, debt and finances, housing, employment, relationships, and immigration status, to the emotional support that patients frequently need while on the ward.

“We support families, carers and friends in understanding the patient’s needs from a medical perspective and what this can look like in terms of practical support, especially subtle changes in cognition and understanding,” says Nelson.

“We key work a patient’s journey from admission to discharge, liaising with external partners in relation to rehab needs. We provide advocacy and support and work from a person-centred perspective.

“We signpost to statutory, voluntary, and private agencies. And we support patients with palliative care issues, choices and arrangements around death and dying.”

Emotional support

The emotional support is vital. Counselling is mainly provided by Bukalo through individual, or where appropriate, family therapy (though she doesn’t offer counselling to children). “It’s about going through their lives with them and looking at the impact of HIV [whether it’s a new diagnosis or not], for example, if their partner is unaware, deciding how best to tell them, or working out their financial situation if they can no longer work.”

Unprotected sex – by any gender – is the main reason for contracting HIV. Nelson and Bukalo both believe that education around HIV is still lacking and it is why they are seeing the highest number of new diagnoses among their patients is in the over-50 age bracket. There can be several explanations for this: they contracted HIV earlier in life but have lived well until now; the result of an affair; their current partner dies or leaves and they embark on new relationships and online dating, without understanding the implications of unprotected sex.

“HIV isn’t just about young or gay people, age isn’t a barrier,” says Nelson. “It can affect anyone, from people who are living on the streets to multi-millionaires, we’ve seen it all.

HIV goes across race, gender, colour and age. It’s any person’s disease.”

The oldest patient they’ve had at the hospital with a new diagnosis was 83; among current patients it’s 79.

Patients often know they are unwell, but don’t know why, and carry on until they collapse either at home or on the street and are taken to hospital and suddenly they are faced with an HIV diagnosis that they are unprepared for, says Bukalo. Confronted with this life-changing news, this is when counselling comes into its own.

For older people, the symptoms of HIV-associated neurocognitive disorder can be mistaken for dementia, which is likely to be a contributing factor in late diagnosis. As Nelson says: “A diagnosis of HIV is not really considered for older people.”

A couple of decades ago it was not uncommon for there to be four or five deaths a week at the hospital; now that is more likely to be an annual statistic. However, dying and death are sadly inevitable parts of their job.

Nelson says: “I think it’s a privilege for someone to allow me to support them in dying when the death is expected.

“We try to make dying as special as possible by exploring what death means to them and fulfilling their wishes. It can be a rollercoaster ride for the patient and social worker as they explore fears and we try to help them reach a place of acceptance.”

Chaplaincy service

The hospital chapel holds an annual memorial service for patients, as well as regular services through the week. The chaplaincy service is run by Catholic nun Sister Bernie Devine. Although it is a Christian-based service, it represents many faiths and there is a timetable of services for different religions including Catholic, Church of England, Seventh-day Adventist, and Jehovah’s Witnesses; and local imams in the community can be called in if required.

The chapel’s inclusivity is apparent in the chaplain room next door which is stacked with religious texts of various faiths including Bibles and Qur’ans, as well as prayer mats and signs for Mecca.

The chaplaincy team often steps in when religion is in conflict with treatment. “In some African communities, particularly among women, there can be this belief that ‘God will heal me, I will get better’ and they refuse to take the HIV antiretroviral medication. That can be quite a difficult belief to break,” explains Nelson.

When this happens, a chaplain with the most appropriate nationality, faith and language, is asked to speak to the patient to explore their beliefs and encourage them to take their medication.

Volunteers and students

As a charitable hospital, Mildmay is backed up by a group of dedicated volunteers and a constant stream of student doctors, nurses and social workers. Nelson is a practice educator and at the moment she has three social work students on practice placements.

After a two-week induction, students are expected to handle a caseload, which by its very nature will inevitably be complex. “I always tell them that they can come to me with a question, but they need to have possible solutions too.”

She is passionate about students understanding the importance of building relationships with patients.

Seventy-five per cent of our work is about relationship building. We spend a lot of time on the ward listening to patients and helping them identify their own needs.”

“The beauty of working here is being able to come in every day and build up a relationship and understand the nuances of that person, and carry out holistic assessments. We are spoilt here in that we can sit down and have a cup of tea with a patient and socialise and assess at the same time,” adds Nelson.

Bukalo agrees: “You can work with people here rather than doing to them. We have smaller caseloads [than a local authority social worker]. We have a little bit more time to get to know the patient. There’s a big difference between working with someone and just putting services in.”

Three decades on from that TV ad we may feel we know more about HIV/AIDS than we did, but misconceptions and stigma still exist and need to be challenged.

As Nelson says: “When people see someone who has cancer, it’s ‘Oh god, how awful’, but there’s often a far less sympathetic reaction to someone with HIV, almost as if people think they’re to blame.”

Statistics

  • In 2016, 5,164 people were newly diagnosed with HIV in the UK (3,938 men and 1,226 women), with 278 cases of AIDS and 442 deaths.
  • Half of the diagnoses were reported among gay and bisexual and other men who have sex with men, with 19% and 22% of diagnoses reported among heterosexual men and women respectively.
  • There were 130 diagnoses among people who inject drugs.
  • 41 acquired HIV from mother-to-child transmission.
  • The remainder were acquired through other exposure routes.
  • The 5,164 HIV diagnoses represent an 18% decline on the 6,286 diagnoses in 2015. This decline is due to a sharp decrease in diagnoses among gay and bisexual men in London, and a continued gradual decline in diagnoses in heterosexual men and women born abroad.
  • 70% of those newly diagnosed in 2016 were aged between 25 and 49 years. However, the proportion of people diagnosed at 50 or over increased from 9.6% in 2007 to 19% in 2016.

Statistics extracted from Towards Elimination of HIV Transmission, AIDS and HIV-related deaths in the UK, Public Health England, 2017

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