Patient stories

Do you or someone you know, have an experience of Mildmay that you would like to share?

Mildmay has been caring for people since the 1860s and in that time thousands of people have passed through our doors. Each one of them had their own unique experience of the hospital and its dedicated staff.


Mildmay in the UK


Jason's story


"2005 was quite the year for me. Managing and living above a central London gay bar, life was manic to say the least. Partying almost every night with friends, regularly grabbing just a few hours sleep a night (well, day) before opening the bar, my routine in a way became my downfall. During the late summer of that year, I started to experience flu-like symptoms. However, the coughing, aches, drastic weight loss and having to put an upturned bucket in the shower to sit on because of exhaustion became the norm for me. My life was too fast to deal with it, so I didn’t.

I remember waking up on September 1st, hardly able to move. Something was wrong. At that time I was at my flat in East London so I booked an emergency appointment with my GP. She sent me straight to the Royal London Hospital in Whitechapel. I was admitted immediately. I still had no idea what was going on at this point. Tests were carried out that night including one for HIV.

I said to the nurse, “There’s no way I’ve got it, is there? I was tested six months ago.” I made a habit of testing regularly, despite being unaware of the symptoms. I can recall his knowing expression now, but didn’t think anything of it at the time.

The next day the results returned; a doctor sat by my bed and told me I was HIV positive, an aggressive strain, with a CD4 count of 9 (normal is 500-1500) and a viral load in the millions. I was also weighed, which I’d subconsciously stopped doing, and weighed in at just over seven stone. He explained my condition further, saying I had Pneumocystis pneumonia (PCP) and that I’d been ‘caught just in time.’ In layman terms I had AIDS.

My parents arrived that evening and I just remember my father having trouble processing it at first, but that didn’t last long. During the next three months of hospitalisation they were there twice a week (or more) like clockwork, through every complication. They watched me seizure as cryptococcal meningitis and the HIV attacked my brain; they sat in ambulances with me when things were very grave; they watched doctors give me one blood transfusion after the next; they were patient as I lashed out because of cognitive impairment and confusion; they rode a much scarier emotional roller coaster than I did. My mother told me afterwards that they wouldn’t speak a word on the train journeys back. ‘Most of the times we just couldn’t.’

Looking back, I think I was probably in a state of shock the whole time. I was in survival mode. No time to stop and think. That came after.

Eventually, I was moved to a specialist HIV hospice (as it was known at the time), Mildmay. A more homely setting that dealt with end-of-life care and rehabilitation. Thankfully, I slipped into the latter category. Many there didn’t. There the dedicated team built my immune system back up and treated the HIV dementia that had impaired my faculties, such as communication and writing.

I returned to Mildmay last week, for the first time since my discharge in December 2005, and even though the hospital is newly refurbished and in a different location, and their work is mostly neurocognitive, thankfully rarely dealing with fatalities anymore, the work they do, and the passion they all display doing it hasn’t changed one iota.

HIV changed my life. It changed my family’s life. Much more than can ever be expressed in a single article. The post-traumatic stress that followed still haunts me, and depression is something I deal with on a constant basis. However, I’m now nine years down the line, and healthy, on combination therapy. And I’m very proud of myself and my journey to this point. My advice would be: listen to your body, respond accordingly and get tested. I was very lucky to survive and I’m very grateful.

When my father passed away two years ago, my mother asked me to arrange his funeral, I made a point of including this line in the sermon: “My father was there for his children, constantly, without judgement, just love.” That’s the key, less judgement, more love."

Jason Reid

November 2014, via QX Magazine


"I was admitted to the Mildmay when I was 6 years old in 1946. Had a pain in my leg due to a fall. The doctors there realised I had osteomyelitis, which was very rare then.

If not for the Mildmay I would not be here at nearly 80 years old and still enjoying life.

Thank you all"

Renee P

May 2020, via website


"In the early 1990's Mildmay were so wonderful, caring for some very special friends of mine - Michael Patton (1991) and Matthew Burt (1993).

I am so grateful for all their work these past thirty years."

Norman Goldner

@nlygo

May 2020, via Twitter


Margaret’s story

Margaret was referred from Bart's Hospital where she had been admitted after collapsing with a severe stroke and being diagnosed with HIV. Margaret was referred to Mildmay for day therapy and physiotherapy.

Margaret arrived at Mildmay wheelchair-dependent and in need of a full-time carer. She was unable to manage any day-to-day tasks such as washing, dressing, cooking, or any personal care. Margaret was assessed by Mildmay’s then Senior Physiotherapist, Mahendra Mali, and the hard work on her road to recovery began. 

Slowly and steadily improvement began to show. Margaret’s hard work and determination paid off and today Margaret walks well with just a stick for support. All her basic functional activity such as ability to dress and wash herself, eat her food and do her own shopping and cleaning has returned.


"I can even do my own cooking and shop for what I need. Before I came to Mildmay, I was weak.

Since I started working with Mahendra - and he makes me work very hard - I am now strong. I don't need any help from others. I can look after myself and it's a very good feeling! The best moment was being able to play with my new grandson."


It’s taken time but for Margaret every hour of hard work was worth it. She has got back the precious gift of independence which at one time seemed so far from reach.


Liam’s story

Liam was a secondary school teacher when he became acutely sick and was taken into hospital where he was diagnosed with HIV.

He was referred to Mildmay’s Inpatient Unit and when he arrived he could not walk or move his neck. Any movement at all caused severe dizziness and he was completely bed-bound.

With support from the inter-disciplinary team at Mildmay, Liam began to regain his health. Physiotherapy developed strength in his muscles and slowly he re-learnt how to walk, sit, stand and to use the stairs.

After just three months Liam was able to return home. He  regularly attended Day Therapy to support his independence and recovery and no longer needs a crutch. He uses the gym where he walks at three miles per hour on the treadmill - an incredible achievement.

Liam also provides inspiration and wonderful support to other patients at the beginning of their journey to recovery.


Mildmay in East Africa

"Hello, l love Mildmay, cos it removed me from the grave cos I was going to die but Mildmay healed me, and it has changed my life.

Hoho I love Mildmay Uganda god bless u."

Sara Kabuye

May 2020, via Facebook


Rhoda’s story

Rhoda is living with HIV in Western Kenya. Aged 23, she was gravely ill and weighed just 24kg. The team of community health workers, trained by Mildmay, worked with Rhoda to regain her health and strength. They used tree branches to create physiotherapy bars that she used to strengthen her bones 

"For so long I lived in isolation and felt hopeless. The community health team has helped me get back on my feet. They’ve helped me start my own kitchen garden, growing good fresh vegetables that are wonderful for my health."



Patricia’s story

Nine year old Patricia was brought to Mildmay Uganda by police officers after being found almost lifeless, living in a pig sty.

She had been subjected to terrible cruelty, was emaciated, weak, hungry and her limbs were paralysed. She was unable to walk, speak or eat and weighed a mere 12.6kg. Her lips were visibly swollen as if she had been bitten by an animal.

At Mildmay, Patricia received around-the-clock nursing care alongside a wide range of integrated services from the multi-disciplinary team to facilitate her recovery. Patricia has now been discharged safely having made astonishing strides, and continues to attend Mildmay for rehabilitation and physiotherapy. She is also delighted to be back at school with friends and looking forward to a brighter future.


Margaret, Rachael and Maria’s story


Rachael and Maria

Margaret is a Mildmay-trained Community Health Worker in Kenya.

Here she talks about visiting Rachael, who is living with HIV and had just given birth to her third child, Maria.

Rachael is one of Mildmay’s clients who we supported to receive antenatal care, hospital delivery and antiretroviral HIV medication. Thanks to this care, unlike her other children, Maria has been born free from HIV. Rachael lost one child to HIV and her other child is also living with HIV.

Rachael is overjoyed and says, "This feels like  a new beginning full of hope. I just wish it had been so for my other children -this should not just be the dream of every parent, but the way of the future.”


Othini’s story


Othini plays with his little girl, throwing her into the air enjoying her laughter and delight.

One year ago Othini was bedridden and frail. HIV had affected his mental state; he was erratic, aggressive, unable to cope with taking his medication and was struggling to stay alive.

Today he is radiating health and tells us  When I knew I had HIV, I lost myself and I longed to die.

If the Community Health Workers hadn’t talked to me and given me care and support , I would have died, but thanks to you I survived.”

Othini has been receiving support from Mildmay’s programme since it began and his battle with HIV has seen him struggle with ill health and stigma. Today he is healthy and proud and full of love for the family who almost lost him.

"I am so happy that my child is also HIV-negative after the support you gave my wife during her pregnancy.

Please continue your work, continue to educate and help people like me.”


Some of the many visitors to Mildmay over the years

Queen Mary (1922)

Margaret Thatcher, (1989)

Princess Margaret, Countess of Snowdon

Hollywood royalty, Elizabeth Taylor

"I was there that day. She was 2 hours late 🤣"
K & Mrs Fortensky


"I have a painting drawn by Kevin, which Elizabeth Taylor autographed during her visit to Mildmay."

AK

Sarah, Duchess of York

Diana, Princess of Wales

Diana visited Mildmay 17 times in the 1980s and '90s, both in an official and a personal capacity.

In this photograph she can be seen signing the same portrait that her son, Prince Harry, sits beneath while he signs the visitor's book in the photo below.

Prince Harry, Duke of Sussex

Our new hospital was formally opened by Harry in 2015.



*Names and other identifying elements are changed where necessary to protect patient confidentiality.


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