By Hadley Stewart | @wordsbyhadley


Europe’s only specialist hospital for the rehabilitation of patients living with HIV-related health conditions is being threatened with closure. Mildmay Mission Hospital in East London was made famous by numerous visits from Diana, Princess of Wales, during the 1980s and 90s. She shook hands with people living with HIV and slowly changed the hearts and minds of a nation that was living in fear of a new virus. Not only was society making progress in its attitudes towards people living with HIV, medical development meant that fewer people were dying as a result of complications from the virus. As such, funding for specialist HIV services has slowly been on the decline, leaving Mildmay looking to find a new place in the healthcare landscape. 

FROM CHOLERA TO AIDS

Mildmay’s story started well before the discovery of the HIV virus. Mildmay was established in the mid-1860s to provide spiritual guidance and care for the sick by Reverend William Pennefather, and his wife, Catherine. When cholera broke out in East London in 1866, Mildmay’s small team of nurses volunteered to care for those suffering from the disease. This outbreak resulted in the creation of Mildmay’s first nursing service, which expanded within a few years to form the Mildmay Mission Hospital, opening in a disused warehouse in East London in 1892. By 1948 it had been absorbed into the newly-formed National Health Service, but the need for Mildmay was soon questioned by the NHS, who argued that Mildmay was surplus to requirements, given its proximity to the much larger Royal London Hospital. 

By the 1980s, the trustees of Mildmay saved the hospital by reclaiming it back from the NHS, and made the case that it should become a specialist hospice for people dying from AIDS. Annie Holme was a nurse on Charles Bell ward at the Middlesex Hospital’s AIDS unit during the early nineties. She recalls the important role Mildmay played in the care of patients during their final days, “The Mildmay was very much a partner organisation.” Alongside the Mildmay, the Lighthouse in West London also provided similar specialist care for patients with HIV. “All of our patients at some point would either go to the Mildmay or Lighthouse and that was always their choice, and what worked for them.” 

Before the advent of antiretroviral therapies, the focus of doctors and nurses caring for patients with HIV was end of life care. While the AIDS unit at the Middlesex Hospital treated patients during an acute episode of their illness, the Mildmay provided holistic services, such as respite care, a day unit, and hospice care for people at the end of their lives. Other hospices in London did not accept patients dying from AIDS, reflecting the stigma these patients faced from within the health system. The palliative care team at the Middlesex Hospital was initially dedicated only to patients with HIV, giving patients the choice to die at home or at the Mildmay. But Annie remembers that some patients had such a strong connection to her ward that they preferred to die there, “Some patients did want to die with us, because they’d gotten to know us so well and that’s where they felt comfortable and safe.”

Nurses caring for patients with HIV also shared this sense of family. “Two of my colleagues worked at the Mildmay before coming to Middlesex, and I used to do agency work at the Mildmay,” says Annie. “There was that sense of very reciprocal and joined-up working going on.” This camaraderie was perhaps born from the challenges faced by not only those dying from AIDS and their families, but also from those who nursed them. “There was this idea that we were going through something that was different to everybody else’s experience outside HIV,” remembers Annie. “I think we were in our own bubble and that we felt separated from the rest of the hospital. There was a strong sense of us being quite different, and perhaps others finding what we did quite shocking and difficult to comprehend.”

THREATENED WITH CLOSURE

As antiretroviral therapy drugs saved thousands of people across the UK living with HIV from death, the Mildmay Hospital moved away from providing hospice care to rehabilitation of people with HIV-Associated Neurocognitive Disorders. The new hospital building was opened in 2014 and has two in-patient wards for those requiring round-the-clock care from its team of specialist healthcare professionals, as well as outpatient services. The organisation maintained strong links with the Royal Family, with Prince Harry formally opening the new building, as part of his ongoing mission to continue the work of his mother in the HIV sector. 

But the success of effective HIV drug therapy has come at a cost for Mildmay. “If we look at the last 10 years, you can see that year on year the numbers are slightly less,” explains Geoff Coleman, CEO of Mildmay. “Occasionally you might get a year where the numbers pop up a bit, but generally there has been a downward trend.” As a consequence of this, the hospital’s in-patient unit has been running at around 50% occupancy, and funding is currently being stripped by NHS commissioners, in favour of moving services into the community. “The general feeling is that there is less need for Mildmay, and that more of the services we provide could be provided in the community. So in other words, not in an in-patient service, but rather patients should be able to access everything that they can get at Mildmay in their own community.”

Geoff seems concerned by this, however, having spoken with patients who have had difficulty in accessing specialist services away from the Mildmay. “We’re finding that community services are under a lot of pressure and finding the provision of services really, really difficult,” he explains. “What tends to happen is that our patients are referred to community services, and they might get one or two appointments, and then nothing. And then sadly they end up back in acute hospitals.” The stigmatising of people living with HIV also means that some patients would rather be cared for by specialist centres, like the Mildmay. “Stigma has been declining over the years, but everyone would agree that we haven’t eradicated it yet,” argues Geoff. “We would love it to be where patients felt that they weren’t stigmatised at all within their local communities, but they certainly don’t feel that. There is a preference to come to Mildmay rather than seek those services in their own communities.”

“It’s still clearly needed, because we’ve not eradicated HIV,” says Annie of the decision to cut funding to the Mildmay. “I think that a lot of people think that it’s no longer a problem. You know, people think that you take a tablet and that’s it. It’s becoming really minimised as a problem in healthcare, and that’s obviously impacting on the decisions from commissioners.”

Given the links between Mildmay and the Royal Family, the Mildmay reached out to Prince Harry. “His office is aware, yes,” says Geoff. “They have to walk a very fine line and they are very supportive of us, at the same time.” Despite this, there is very little they can do to reverse the decision by NHS commissioners. “The Royal Family cannot be seen to be critical of the government or NHS commissioners in any way. It is a very difficult line that they have to walk.”

A NEW PURPOSE FOR MILDMAY?

Just as the management at Mildmay started to think about the future of the hospital, another virus landed on the shores of the UK. The novel coronavirus, COVID-19, has already killed over 8,000 people and over 70,000 people have tested positive for the virus in Britain. Mildmay Mission Hospital might have just found a new purpose, as a step-down centre for patients with the coronavirus. The hospital’s CEO says that in the first instance, the hospital will take in the most vulnerable patients. “We’re focussing primarily on homeless patients,” explains Geoff. “So patients will go into an acute hospital, they might be on an intensive care unit, but once they are stabilised, we can then free up an acute hospital bed by taking in those patients at Mildmay. Hopefully we can help them find some accommodation.” One of the two hospital wards has now been assigned to treat patients with the new virus, whilst the other will continue to be used for those living with HIV.

Although its outpatient services are currently suspended due to social distancing restrictions, Mildmay will remain open to patients with HIV. “We don’t want to stop treating patients with HIV,” Geoff makes clear. “With the numbers of HIV patients diminishing, funding for COVID-19 patients will enable us to do that.” The hospital is anticipating to sign a contract to secure 3 to 4 months’ worth of funding, in response to the coronavirus pandemic. The hospital management will then discuss the long-term funding plans for the Mildmay beyond this time period, which they seem cautiously optimistic about. “We’re hopeful they will give us a longer contract going forward,” says Geoff. 

Mildmay Mission Hospital’s history seems punctuated by moments of funding cuts and renaissance. Going from a centre to care for cholera patients, to parting ways with the National Health Service, before coming to the support of the NHS during the AIDS crisis of the late eighties. The hospital and its staff have been witness to suffering, societal stigmatisation, but also medical innovation and a sense of unity. As it enters its next chapter as a centre for the most vulnerable coronavirus patients, the hospital will once again rise to the challenge of a new virus. Their history and values will doubtless put them in good stead to weather this storm. The long-term future of the institution, however, remains uncertain. Only time will tell if the doors of the hospital will remain open long enough to see this latest pandemic. 

As this issue marks 4 years of me writing for FS magazine, I would like to dedicate this article to all the NHS healthcare professionals who put their lives on the line to help others. Just like the doctors and nurses who worked on the AIDS unit at the Middlesex Hospital, those working on the frontline today won’t realise how much of a difference they have made to their patients, the NHS, and our society until it’s being written about in a chapter from a history textbook. Thank you for looking after our families and friends, please look after yourselves too.


READ ALL THE ARTICLES FROM FS 177: