Networks: South West Critical Care
Location: Junction 24, Bridgwater
Date: 26th June 2019
Information: For more details please contact us Find out more
Thames Valley & Wessex ACC ODN
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
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: firstname.lastname@example.org
Thank you for taking the time to read my story.
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.
6 year old Ruby was admitted to the Oxford Children’s Hospital (CHOX) in June 2016 following rapid onset paraplegia and acute urinary retention. She was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).
She was initially seen by the acute multi-disciplinary team (MDT) which included Physiotherapy, Occupational Therapy, Neurology and Speech and Language Therapy. After 1 week’s admission she was medically stable and ready to receive intensive rehabilitation from the Paediatric Neuro-Rehabilitation Team, based cross site at CHOX and Nuffield Orthopaedic Centre (NOC).
Whilst on the ward she received daily treatment from the neuro-rehabilitation Occupational Therapist (OT) and Physiotherapist for 2 weeks. Ruby also had a joint Physio/Orthotics assessment and then provision of a splint to improve her walking pattern and stability. Once safe to return home she was discharged with the plan of attending the NOC for a transitional period of 1 week for intensive therapy under the early-discharge model.
During this transitional period Ruby was seen daily (Monday-Friday) and the team regularly reviewed and discussed her progress during the week. It was felt further input was required in order to maximise outcomes and support her transition back in to the community. With this in mind she attended the hospital school and the OT provided additional support with equipment and advice to support in the classroom. There was the opportunity for Ruby to attend 2 aquatherapy sessions for the Physiotherapist to model appropriate water based activities that her family could then continue in the hotel and local pools. Both Ruby and her mum were seen for regular sessions with the clinical psychologist.
Following early referrals to the community services there was a transfer of care after her transitional week, however Ruby continued to attend weekly MDT appointments at the NOC for a further 6 weeks to support this successful transition. This was finalised with a MDT meeting, held at her school, with the family and school staff to ensure that all aspects of her care had been addressed and appropriate advice and strategies were provided to help her optimise performance in tasks and activities within the school environment. Ruby also underwent a neuro psychology assessment in September 2016
Ruby was successfully discharged from the service following the MDT meeting at the end of September and the community services are meeting her ongoing therapy needs in the educational and home setting. She returned to Year 2 at school and her learning support assistant (LSA) has now been trained to help with her catheter which has meant that Mum no longer go into school every day.
When Ruby first met the neuro rehabilitation Physio and OT in June her Mum clearly said that their family aim was for Ruby to walk down the aisle at her Mum’s wedding in October 2016. This was quite a big goal as at the time Ruby had no head or trunk control and was unable to move her legs. With a strong working relationship between the neuro rehabilitation therapists and the family this goal was achieved and Ruby did indeed independently walk (run!) down the aisle at her Mum’s wedding much to the delight of the whole family.
“I thought that the service was fantastic and we thought it was down to the care that she had that she made such a quick and successful recovery,” said Mum when asked about the whole period. “They weren’t just caring towards Ruby, they were caring towards all of us as a family and that made a big difference”
On 18th July 2010, baby Alice was welcomed into the world by her parents, Ed and Sam Stott. The first born, she developed as any baby was expected to and the new family spent time getting to know each other.
In the Summer of 2011 Alice started to experience ‘jerks’ which were thought to be as a result of a fever but quickly these became more regular. As a result she was referred to Basingstoke where she was diagnosed with benign myoclonic epilepsy. These initial ‘jerks’ weren’t regular and seemed to be well managed with medication. At one point there was a period of 6 months were she was asymptomatic for six months and Ed and Sam began to believe that there wasn’t so much to worry about. The team at Basingstoke set up an open access arrangement for Alice where if there was anything wrong they could call or email or if necessary, take Alice straight into the hospital. A series of genetic tests were also undertaken due to a history of paternal epilepsy, this was ruled out.
In 2012, Ed and Sam welcomed Alice’s brother, James, to the world. What should have been a happy time for the family was marred by the constant worry about Alice’s condition.
In October 2013 Alice experienced her first whole body tremors, otherwise known as seizures. These would come in clusters and last up to 30 seconds at a time. At one point she experienced over 100 tremors in a period of 2 hours. This was distressing and frightening for the family and Alice was able to predict the seizures, saying, “it’s doing it”. Unfortunately the medication was no longer controlling the seizures and Alice was admitted via ambulance to Charlie’s Day Unit at Basingstoke hospital 8 times in 6 weeks as a result of her seizures. This would sometimes be a difficult process as Alice’s post-seizure medication would make her “bounce off the walls” and some ambulance crews were reluctant to transport her as they did not understand why an ambulance transfer was warranted despite the fact that she held a statement, now known as an Education, Health and Care Plan.
At this point referral to the specialist epilepsy team at Southampton was the only sensible option. The consultant immediately made it clear that she was looking to solve the problem of Alice’s epilepsy rather than to manage it and arranged an array of tests. Having initially been told that it was likely that Alice would grow out of her epilepsy, this was a reality check for Ed and Sam and they realised her condition may have a long-term impact on the quality of her life and also of the family.
Over a period of time, Alice was tried on a number of different drugs with varying degrees of success, but it was found that she had developed a form of drug resistant epilepsy which meant that as her body became used to the drug, it would stop being as effective and the seizures would no longer be controlled. Throughout all of the meetings with the team, it was a very collaborative approach which involved the consultant, the epilepsy nurse specialist, Alice and Ed and Sam.
In September 2014 Alice started school. A significant seizure on her first day was not quite the plan and she was admitted to hospital. This was upsetting for all involved and Alice was only able to complete half-days including a nap due to her medication at first. At this point, Sam decided not to return to her work as a lawyer as she needed to be able to support Alice at all times if she had a seizure. New medication improved things and Alice was eventually able to complete mostly full weeks at school.
In June 2015 Alice was referred on to a Children’s Epilepsy Surgery Service (CESS), one of 4 in the country, for decision whether she would be eligible for epilepsy surgery. The family were supposed to have heard the decision by September but in May 2016 there had still been no outcome.
Talking to Ed, the following things really impact on the family as a result of Alice’s epilepsy:
Waiting on the decision from CESS centre means that they feel unable to move forward. They are in limbo and do not know whether Alice will have to cope with her epilepsy forever or whether an operation could “fix her”. Their biggest fear is that they will not make a decision and will give them the option to decide. They want the experts to tell them what the next step is.
Ed and Sam take it in turns to watch Alice sleep when she is fitting to ensure that she is ok. This means that they do not have a normal sleep pattern and James often sleeps in with the other parent as they “do not want him to feel pushed aside as a result of Alice’s epilepsy”.
Speed of support
The nature of epilepsy is that a patient needs appointments when they are in status, not when they are good. Ed and Sam have access to the epilepsy specialist nurse team at Southampton but feel that others in hospital may need their time more if they have a question and so sometimes do not contact
Clinic letters regularly take approximately 3 weeks to get processed and sent to the GP. This means that the GP will not amend any medication until the letter is received, delaying important changes to a regime that could improve Alice’s quality of life.
Family suggestions for improvement
Take care of the patient and everything else will follow Thomas Frist
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