Richard’s Story – Physio at Southampton Neuro ICU
For a few weeks in July 2020 I had a sore back, being lockdown and have overdone it on golf and cycling I didn’t think much of it. I visited physios and Chiropractor but everyone agreed it was just being nearly 50 and over doing it. Gin and Tonics with some rest was the answer – an answer I happily accepted.
However on the evening of 14th July 2020 I woke up in the night in so much pain and eventually lost control of my legs and arms. The Paramedics were calm, assuming I had a trapped nerve and I was taken to Winchester A&E for an MRI which took hours to complete due to the level of pain. Eventually the results were sent to UHS Spinal team and they quickly saw that I had a massive infection compressing my spine and a dangerous abscess on the C1 vertebrae (top of the spine). I was blue lighted to Southampton where they were prepping to operate immediately – whilst they waited they phoned my partner Sarah and explained there were only two outcomes of the operation – as my spine had already suffered a life changing stroke – I would be quadriplegic or wouldn’t survive the operation.
After a ten hour operation on my spine – the worse news was provided to me when I came round – I was paralysed from the neck down.
I was ventilated for 29 days in NICU and under the care of the exceptional Dr John Hell and the wonderful Nicki Seal – Lead Physio.
I was eventually weaned off all the life-saving machines and drugs over the 33 days in NICU and during this time Nicki provided daily physio and motivation to keep me positive and my muscles moving and avoid contractions and inevitable muscle atrophy. Being unable to move or speak is torturous and I truly believe I would have lost my sanity without Nicki’s daily visits and care.
Amazingly she managed to get my hands working to a basic level and even a few toes wiggled during this time but she clearly explained that my prognosis was not good but always gave me hope. My partner kept a daily journal based on the hour visit she was allowed per day (restricted due to COVID) and we have since read back through the journal and I can see that I made improvements nearly every day and these were all due to the amazing care and physio attention I had every single day whilst in NICU. The nursing staff, doctors and Physio team were outstanding – every day they supported me to improve. Nicki set goals to help me focus and stay positive – she would stay to speak to my partner Sarah to give her updates and keep her spirits up to. COVID made everything very restrictive but Nicki ensured that Sarah was part of my journey and understood every day what was happening and the next steps
After 33 days in NICU I was eventually well enough to be transferred to a spinal ward (F4) where Nicki kept in touch with me whilst I waited to transfer to Salisbury Duke of Cornwall Spinal unit. My story about Wessex NICU ends there and I wanted to make it clear that this story is not about me, it is about Wessex NICU and the unsung heroes at the beginning of people’s spinal cord injury journeys. My physio experience post UHS was not positive, but having poor physio experience made me realise even more how exceptional NICU were! I am now thankfully home and onto the next part of my journey receiving exceptional home physio from superb private physios – they building on the successes and ethos of Nicki Seal – my Guardian Angel.
So PLEASE help and support Wessex NICU as much as you possibly can – I am here now, to tell my tale, but without the skills of Wessex NICU I wouldn’t be. I am under absolutely no illusion that if it wasn’t for the University Hospitals Southampton and Nicki in particular, I would be unable to tell you my story.
Richard Burdett, Meon Valley, Hampshire
Danielle’s Story – Guillain-Barre Syndrome (GBS) Bournemouth ICU
‘Finally in a few months I’m off to my lifelong dream trip to Vietnam and Cambodia, well so I thought’.
Night of the 7th January 2019 (due to fly out 8th) Started having unusual intense pins and needles in my hands and feet, the next morning this got worse I felt unsteady on my feet so made an appointment at the doctors that morning. I was informed nothing was wrong and I was probably just worried/anxious about my travels.
8th Jan, My dad took me to the train station ready to start my journey, my legs went I didn’t feel right so went home my mum called 111 straight away, within minutes an ambulance arrived, I was then admitted that night. On the A&E ward there were lots of nurses/students, running tests and I was moved to AMU. The morning of the 10th I was diagnosed with Guillain-Barrè Syndrome (GBS), intensive care was on standby, they were monitoring my breathing and decided to start me on ivig which was a five day course the Neurologist came to see me to explain what will happen and informed me it’s going to be a long journey.
14th Jan, I moved to ward 3 (general medical ward). Over these days my body got progressively worse my whole body was given up shutting down.
15th Jan, I was moved to ITU where they intubated me and put me on a ventilator. They fitted a tracheostomy whilst I was asleep. When in my coma I could hear family and friends, my dad read newspapers and magazines to me.
11 days later they woke me up, but I was put back to sleep and they tried again the next day.
27th Jan, Day 12 I was now awake but I could only see and hear couldn’t move I was like this for 2 weeks in ITU. Once awake I couldn’t feel anything had no movement of any muscles (felt trapped in my own body) no way of communicating. I was so frustrated as I was so thirsty and couldn’t communicate this. I was given a motion bed as moving me was so painful. At this time I was at my lowest, didn’t want to accept help, or be a part of the outside world. The call bell on my head/bed, was a great relief, the nurses knew what I wanted without me speaking ‘They heard me even though I couldn’t speak’. Over time this got easier as and when I could use my lips. I had a visit from a patient which helped even though I was jealous of him. This was a really depressing time for me, Jen (physio) and Rosanna (Occupational therapist) both recognised this so helped me by, creating a weekly calendar, nails, massaged decorated my bedspace and brought Timmy (my dog) into see me, which lifted my spirits, the communication board was excellent as I had something to look forward too. When they started to transfer me onto a seat, this was scary and very painful.
Day 26 (Feb) 2 weeks had passed feeling started to come back, I could do a shoulder shimmy! I started to feel pain (which was good, so the doctors said!) I could start to move my head the breathing support was being reduced so I started taking breaths myself, which was scary at first but I soon got used to it.
Day 34 (Feb)the trachy was removed so I was able to breathe on my own this was a very strange process in recovery, being able to talk again, the feeling was amazing! Having my first drink, cake and yogurt which was lovely, the taste was so good, every swallow was scary!
Day 36 (5/6wks) I was due to visit the ward but a bed become available earlier so I was moved down to ward 2 (lung ward) during the night, which wasn’t good as my mum couldn’t stay and had to come back in visiting hours which was at 2pm. Jen (physio) decorated my bedspace which really helped as I struggled with the transition weeks in here were tough and tiring but very rewarding as I was starting to get better, these weeks went a lot faster than intensive care.
There was talk of moving me to rehab ward but as I still had the PEG (which has to stay in for 3 months.) At the end of March 2019 I got discharged had 1 weeks’ worth of physio and was back in, as I woke up and couldn’t feel below my knees this lasted for 2 days residual due to fatigue.
I then stayed for another month (April) had ITU on standby, my breathing was monitored again and physio continued to support me. Trying to build up my muscles again I started to get really bad pains in my tummy they scanned me and put me on morphine for the pain and suspected I had passed a stone.
Follow up clinic, was very helpful – to see the ward bed space this was so different it was a happy place. Great to be able to ask questions. I saw Cat (ward sister) and Jen (Physio) for around an hour this was beneficial for the staff too great feeling for all.
Then in August 2019 I had bad pains again had a scan and they found gall stones so I was put on a waiting list to have them removed.
October 2019 I was in Scotland had tummy pain again went to hospital was put in isolation as my infection levels where really high they kept me in for 2 nights, where going to operate but decided this wasn’t the best option as it would be better for me to have the operation back at home. I was very shocked that they couldn’t get my health records they only went on what I had told them.
When I got back home I wrote a letter to my consultant and received an appointment for 7th November 2019.
I will be discharged from my occupational therapist at the end of January 2020 and have my physio appointment in February 2020 to hopefully be discharged but feel slightly anxious as I’m losing my connection and advice my speech therapy clinic is booked in for March 2020.
I’m still in contact and appointments with my occupational therapist Pauline as fatigue issues and she has helped me amazingly with my employer adapting my roster at work. My first speech and language therapy appointment tomorrow (19th Aug 2020) as voice weakened and swallow bit weaker most likely due to the tube and GBS weakening the muscles
I enjoy going back to visit the unit and staff and will always keep the connection. I’ve started to see another patient that was in ITU but has now been moved to ward 2.
Overall I am recovering well and just want to help fundraise and raise awareness about GBS and the amazing charity I do this with is GAIN charity…www.gaincharity.org.uk
I am continuing to write my book and managed to get another couple of chapters written during lockdown. I look forward to the day its completed and can hopefully help others going through the same things.
Massive thanks to the NHS the work they do is outstanding and they saved my life.
Martin's Story - Poole ICU
As we come too celebrate 70 years of the NHS in July 2018, founded by MP, Nye Bevan, for Ebbw Vale, South Wales, I come to celebrate my 10 years of survival of a critical illness in July 2008.
Just to give you some back ground about me, I have been married to Lyn for over forty years, and we have a son and daughter, who we are extremely proud of. I have worked in the electronics industry all my working life, from design, manufacture, and sales and marketing, the latter as a company director for 20 years before my illness in 2008.
Like many people I did not look after myself, eating irregular meals and not eating the correct food, I was travelling extensively in the UK, Europe and North America trying to balance work with my family life.
My life changed on Saturday 19th July 2008 after going to see my GP on the previous Monday morning with a complaint of excruciating pain in my lower abdomen, incidentally this had been getting progressively worse over the previous 6 months and I had been seeing two GP’s. I never went to see the doctor from one end of the year to the other. On my visit to the doctor on Monday 14th July I was given a bottle of Oramorph and told to wait for an appointment from the hospital for a colonoscopy, the appointment came for the following week.
I have to say I didn’t want to go into hospital as I feared the worst, anyway to cut a long story short my son came home on the Saturday to see me, he could see the state I was in, I had been in bed all that week only to go to the bathroom, I was getting progressively weak and losing weight as I was not eating.
Lyn and Ian decided to make that call to the emergency services and request an ambulance, it duly arrived and I was taken to Poole hospital A &.E. This is where my story becomes a little vague as I was given a lot of pain relief as the pain in my abdomen was getting beyond 10.
I can remember being given some transfusions and various X-rays and CT scans on the Sunday, it was revealed that I had a large abscess on my Liver and I had a drain inserted in the afternoon.
The next 4 weeks are extremely hazy for me as I underwent a Laparotomy which necessitated a Sigmoid Colectomy and ileostomy. I was in ITU for some three weeks pre and post surgery.
I had systemic Sepsis, inter Abdominal Abscesses, Diverticular Disease, Peritonitis Pneumonia, Adrenal Crisis and Plural-effusions and Multiple Cerebral Abscesses which were inoperable as they were scattered all over my brain, this was in consultation with the Wessex Neurology Unit in Southampton.
I had a CT scan on my brain, as I managed to fall out of a chair in HDU, this is how the abscesses were discovered on my brain.
Lyn, Ian my son and Clare my daughter received the dreaded phone call late one night and rushed to the hospital to be told by a Doctor that my condition had deteriorated and I was not expected to survive. The next 24/48 hours were going to crucial.
There were some very dark moments in critical care when I thought I was being given drugs against my will, being held hostage, patients brains being swapped over, on a train in France that I could not get off.
The care and compassion that I received from Poole hospital was exemplary and also the support given to my wife, son, and daughter.
I have been left with some chronic conditions and the early days of my recovery were difficult, I did suffer some PTSD and luckily my Pain Consultant referred me to the then Dorset Brain Injury Clinic and was treated by a lovely Doctor who was a Clinical Psychologist, and I was treated for about 2 years. She taught me the therapies that I could use to help myself.
One of these therapies was distraction, so I have given much of my time to various NHS organisations. I am involved with the Dorset Community Brain Injury Peer Support Group which we run on the first Friday of each month with professionals of that organisation.
I am also an Independent Lay Member of Dorset CCG Audit and Quality Group and a Patient Partner of Wessex Academic Health Science Network for Sepsis and the Deteriorating Patient.
I am also an Expert Patient for NHS England Adult Critical Care Clinical Reference Group and also now a representative of the Southern Adult Critical care Strategy Group.
I am a founder member of ICU Steps Poole, a support group for the ex-patient and loved ones, we receive generous support from Senior Staff Nurses from Poole Critical Care Unit.
I am passionate about the NHS as if wasn’t for the skills of the Surgeons, Intensivists, Anaesthetists, Doctors, Nurses, Microbiologists, Ward Clerks and many more, I could go on and on, I would not be writing this story today.
Thank you NHS and I will continue my support locally, regionally and also nationally, as the NHS continues to support me with my chronic conditions.
I am a Survivor because of the NHS
Gary's Story - Winchester ICU
For a few weeks I was feeling under the weather and on 3 occassions was kept in overnight in hospital for observations, but eventually discharged.
On the 10th June 2017 I was admitted again, this time I was kept in. On Friday night I was in considerable pain, so they decided to operate.
I had a hernia, which had wrapped around my bowel. When the surgeons opened me up they found I had developed Peritonitis as well – after which Sepsis set in.
Once the operation was completed I was placed into ICU where unfortunately I suffered multiple organ failure (liver, kidneys, lungs etc). The team of surgeons decided to place me in a self induced coma which I was placed in for 3 months. During this time I worsened enough for them to contact my girlfriend and basically come in to say her final goodbyes to me.
Miraculously, I managed to pull through. I was woken after 3 months and very gradually weaned off all the life-saving machines (dialysis machine, ventilators etc) and began a very slow but steady regime to get me back to normal – which is still in progress.
Because I was in a coma for 3 months, and the subsequent months after waking up my memories of my stay in ICU are still very very sketchy, the nurses and my family kept diaries of my progress, which I have now read – it was very emotional reading these comments from people who had cared so much for me, but I didn’t really recognise.
After 5 months in ICU I was eventually well enough to be transferred to a general ward (Kemp Welch) where I was visited by a specialist bowel surgeon based at Southampton General Hospital who agreed that the best thing would be for me to be transferred to his unit for assessment.
I was transferred from Winchester Hospital to Southampton Hospital in November 2017 and subsequently after more care, tests and physio (which included my girlfriend being trained to change and manage my fistula wound from home) I was discharged from Hospital on 23rd December 2017. I was seriously overweight when I was admitted into hospital, but when I was discharged I had lost a combined weight of just under 12 stone but am feeling very healthy, and the team of doctors are happy with my overall health. Due to the weakened condition of my Kidneys from organ failure I am currently receiving 2 litres of IV fluid every day over a 15 hour cycle which again my girlfriend has been trained to do at home. I have to have regular blood/urine tests which used to be weekly, but are now monthly, and I am in constant contact with the bowel team at Southampton, as well as my local GP and my nearby pharmacy. Phsyio is going well and I am definitely getting stronger and feeling more confident in all aspects of life.
In total I had 5 operations, and due to the coma, suffered major muscle wasteage in my legs which required (and still requires) physiotherapy. I have a fistula still – basically my bowel is exposed and is sticking out of my stomach but is protected by a stoma bag and waste pipe. Due to my ongoing recuperation process I have to get physically stronger so that the bowel surgeon is confident enough for me to undergo the final operation to repair my bowel and get me back to normal. I am hoping this will be sometime towards the end of 2018.
I have been fortunate enough to go back to ICU to meet and personally thank the team for what they did for me. I left ICU confined to a bed in November 2017, but managed to go back in April 2018 and walk onto the ICU ward unaided on my own 2 feet.
I am under absolutely no illusions that if it was not for ALL the teams help, care, patience, understanding and encouragement, I would DEFINITELY not be currently typing out my story. When I say I owe them my life I seriously mean it. They will be forever in my debt.
This story really is not about me, It really is to do with the staff at Winchester Hospital (and to a certain extent, Ward F11 at Southampton Hospital), but particularly the Winchester ICU team, who kept me alive and never gave up on me. My girlfriend and my uncle, who worked very closely with the ICU team, nominated them for a WOW award, which they won, I was really pleased for them, but trust me, that is just the tip of the iceberg when it comes to how much I owe them.
PLEASE help and support these people as much as you possibly can – I am here now, to tell my tale, but without these peoples love, help and support I wouldn’t be. I am under absolutely no illusion that if it wasn’t for the NHS, and these people in particular, I would not be telling you my story.
Gary Barton, Winchester
If anyone reading this has any comments or questions, please feel free to contact me on my email address which is: email@example.com
Thank you for taking the time to read my story.
Amanda’s experience at Stoke Mandeville ICU
Hi, I’m Amanda and I’m a wife and a mum to 3 boys. I was born with muscular dystrophy (MD), a degenerative condition that weakens muscles over time. I’ve had 2 admissions to Intensive Care; firstly for 3 months with sepsis, and secondly for over 6 months due to anaemia. Both times MD complicated my admissions, and I was ventilated and had a tracheostomy to assist weaning from the ventilator.
Being in Intensive Care has been a big part of my life over the last 5 years. One of the biggest issues I had was experiencing severe delirium, hallucinations, and nightmares during my first stay in ICU. I did suffer with delirium on my second admission, but not to the same extent. On my first admission I vividly remember being moved in to a side room, and thought I was having my feet chopped off. In reality, the nurses were bandaging my legs to prevent swelling. On a lighter note; I sent my Husband out of ICU about half a dozen times with wasps that had appeared on me. He had to walk around the unit and pretend he had taken them outside, and each time on his return I had found another one for him.
I am in quite a unique position to have been in ICU for 2 long periods, and have seen a change in how my delirium was dealt with. On my first time, it was a case that what I was experiencing was to be expected, but I had no robust support or advice when I left. On my second time in ICU I had similar experiences, but I felt that there was a better focus on emotional support and making sure I understood what had been happening and why. The staff and my family kept a diary for me during my second stay in ICU, and this has really helped me to process what happened; even now I read through this at times.
Another aspect of my experience was realising on my second admission that, due to my MD, I would not be able to wean off the ventilator and would have to go home with a tracheostomy and 24-hour ventilation. Once I was set up on the ventilator I was going home on, I was able to start taking trips out of the unit. Initially it was with 3 members of staff and what seemed like half a tonne of equipment, including a rickety trolley that bumped my ventilator every time we went over the paving slabs. Over the weeks, whilst I was waiting for care and equipment to be organised so I could go home, we gradually improved the process so that I was able to go out with my family and just 1 nurse, and most of my equipment fitted onto my wheelchair. These trips increased from going around the unit to then going to the on-site supermarket and canteen. I went from feeling secure in the bubble that was ICU to being around strangers that would take a second look and not understand my tracheostomy and why I was wheelchair bound. At first, I felt very self-conscious and tried to cover up my tracheostomy, sometimes using a scarf, but I have now become used to it all. Most days I love going out and about with my family- trips to the seaside, zoo, and theatre, and just enjoying life. I still have days when I feel frustrated and self-conscious, but who doesn’t! Without the nurses and physios taking extra time to make these trips possible, I would have struggled with getting back to normality so I’m really grateful for this.