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.


*To protect patient confidentiality, names and other identifying elements are changed where necessary 


Mildmay in the UK


CJ's story


"I was diagnosed with HIV in 1990 and decided to go into denial. I never expected treatments and simply carried on with life until... the brain swelling.

First it was pins and needles on my tongue. I went to four hospitals and they all said that there was nothing wrong with my tongue, so I went to Gatwick Airport and bought a ticket to Dubai to see a doctor there!

There was not much logic left in me by that time. I'd forgotten I had HIV and just went off without shoes on, and that's when I got arrested - in Gatwick Airport, for not wearing shoes!

After three years in a mental health hospital in Winchester, with them trying to shove antiretrovirals in me unsuccessfully,  I wound up in Mildmay Hospital for two years.

I remember the whole experience being quite exciting as there were lots of things to do compared to the previous mental health hospital. I remember learning to cook and arguing with other patients and there were peaceful times too. I remember "just getting better!"

(I was a naughty patient as I always tried to escape. I didn't like being locked up and my freedom taken from me, and eventually they kicked me out!")


Ada's story

Drawings reproduced with permission


"Hi. I am a former patient of Mildmay Hospital. I came to Mildmay after being in the Royal London Hospital. I'd been found near to the Tower of London after blacking out and with amnesia. They also found out I have skin cancer whilst I was a patient there. I could not remember anything since the blackout (possibly earlier) but my name, but I have been learning all the time and knowing more and more every day. When the ambulance took me to the Royal London, I could hardly talk, so I listened to people around me and that helped, even though I did not have much to say. Five months later, and also thanks to Mildmay staff and a television in the room, I have learned to talk to people - it is not easy and I still have lots of quiet time but at least I can do it, even if I cannot remember all the words I need.

Thanks to Mildmay, I know why I was getting 'jumpy eyes', dizzy and sick. I have BPPV (Benign Paroxysmal Positional Vertigo), which is now almost under control. Since leaving Mildmay and being at Beaumont Court Care Home, I now know why I have a really bad headache a lot and we are working on getting this 5-month old migraine under control.

Mildmay and the Chaplaincy there have been a big part of me coming to terms with my amnesia. I was also diagnosed with anxiety at the Royal London Hospital and am on medication for it. I was trying to work out what I'd forgotten and of course, this was impossible. I was making the anxiety worse (and it was bad enough), feeling very ill with it. It was talking to Sister Bernie at Mildmay that changed things.

Sister Bernie showed me a prayer and certain words in the prayer. It was about looking to the future rather than thinking about things that were in the past; in my case, trying to work out what those things are!

Everyone around me knew what they were talking about but me. I told Sister Bernie it made me feel stupid and it was about then she showed me the prayer. In my heart it felt alright, so I just think about what is going on and making a future, rather than trying to find things I'm never going to  work out in my mind.

Bernie gave me a bible to read also and this has been a comfort, as well as for learning. I don't remember of God was in my life before amnesia but God certainly is now. Thanks and blessings to Sister Bernie for that one as well.

The Chaplaincy at Mildmay has helped me in other ways too. One day, and I don't know where the thought came from, but I said to Bernie that I know I like to draw. I wasn't sure how I knew but I could feel it. I rely on my feelings a lot, as the amnesia has interfered with any experiences I may have had. Anyway, Bernie provided me with pencils, pencil sharpener and paper and I've been drawing ever since. Bernie has encouraged me all the way with this. Again, this has helped me feel not so useless in comparison to other people.

Mildmay's chaplaincy is so special. I've met a few of the Friends also and together with Bernie, they have a warm, compassionate team. Mildmay is a lovely hospital but the chaplaincy is a big part of that.

My heart feels there is more I want to talk about here but my head can't find the words I need but I'm used to that.

Thanks to Mildmay's brilliant chaplaincy for making me feel like a person.

God Bless Mildmay and Mildmay's chaplaincy"

Ada's drawings

Our Chaplain, Sister Bernie's response

"During this Pandemic, having returned to Mildmay Mission Hospital after the second Lockdown, I met Ada outside the chapel where I was sitting ‘catching’ patients on their way to various activities to which they were invited as clients. This was my ruse to meet up with clients downstairs following the edict that I was not to put myself at risk of COVID-19 infection by going on to the wards.

After the preliminary introductions Ada launched into her story; the gist of it was that she was suffering from total amnesia after having been found lying near the Tower of London following a vicious attack. Taken to a general hospital for a number of weeks during which it transpired that she also had skin cancer, she was then brought to Mildmay Mission Hospital.

Ada has no recollection of what had happened, who she was, her family, her background, nor any other relationships in her life. She was a blank canvas, as it were. She had nightmares but not flashbacks for obvious reasons. She suffered from headaches, was anxious that she had nothing to jog her memory. Our therapy staff gave her every support and she began to come down each day to speak with the chaplains. Ada would become more anxious as she endeavoured to remember what she had forgotten. There were tears, days of nothingness and still Ada came to speak with the chaplains.

She is gentle by nature and began to express a need for something deeper in her life. I suggested that perhaps it would be more productive for her to look at her ‘new’ present and future, rather than the past, to become who she is by living each day, now. I gave her a notebook to begin to write things down and that was how we discovered her creative talent, drawing and painting. Also, she wore homemade metal rings and I am sure she had made them herself. It soon became patently obvious that the more she drew and the more she reflected on the fact that she may have been influenced by a ‘higher’ power in her life, the calmer she appeared. I gave Ada some card and she produced beautifully executed cards.

Ada began to read the Bible every day and would often ask for an explanation. The Christmas Nativity Story was fascinating to her. She joined the zoomed morning prayer from the chapel and responded with her heart and soul to one-to-one prayers. Like the caterpillar emerging from the chrysalis of a butterfly, she is blossoming into the person, I guess she is meant to be – caring, gentle and loving. In her own words …

“… this has helped me feel not so useless in comparison to other people … they have a warm, compassionate team which is a great credit to Mildmay…. My heart feels there is more I want to talk about here, but my head can’t find the words I need... thanks to Mildmay and its brilliant chaplaincy for making me feel like a person.”

Ada has now moved on to the next stage of her life journey, a care home, until it is felt that she can cope on her own. She has learnt to rely on her own feelings as the "amnesia has now been interspersed with my present experiences".

I am now in my third Lockdown and consequently have not seen Ada for several weeks although we have connected a few times. There may be more to come while Ada is making her own new history as she continues to weave and to live her fascinating story."

Sister Bernie Devine SP.     


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 (1938)


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 done 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.



*To protect patient confidentiality, names and other identifying elements are changed where necessary 


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