Share your story of sepsis

The Health Committee at the National Assembly for Wales want to hear from you to understand more about how sepsis is impacting people in Wales.

Why is the Committee looking into it?

Sepsis accounts for around 52,000 deaths per year in the UK alone, with over 2,500 of those estimated to be in Wales.

To put this in context, it kills more people than breast, bowel and prostate cancer combined per year in the UK.

Despite this, it is often referred to as one of the most common but least recognised illnesses in both the developed and developing world.

How can I take part?

If you live in Wales and you or a loved one has been affected by Sepsis, we want to hear from you.

1. Tell your story, your way through our storytelling tool and help us to learn from your experience.

2. Share your ideas for how to improve things for the future through our ideas tool.

What's the point?

Your voice is important and will inform recommendations made to Welsh Government on how to help prevent sepsis and better support those affected by this life-threatening condition.

**Closing date extended to 19.01.2020.**

Please note that this is a public, open forum . Anyone will be able to see contributions made in an open online forum, regardless of whether they have registered to the site or not.

If you'd like to understand how your information will be used, you can view our privacy notice here.

We'd also recommend familiarising yourself with our moderation policy before taking part.

We're also running a quiz to test the public's knowledge of sepsis. Take it here: https://bit.ly/36usfxz

The Health Committee at the National Assembly for Wales want to hear from you to understand more about how sepsis is impacting people in Wales.

Why is the Committee looking into it?

Sepsis accounts for around 52,000 deaths per year in the UK alone, with over 2,500 of those estimated to be in Wales.

To put this in context, it kills more people than breast, bowel and prostate cancer combined per year in the UK.

Despite this, it is often referred to as one of the most common but least recognised illnesses in both the developed and developing world.

How can I take part?

If you live in Wales and you or a loved one has been affected by Sepsis, we want to hear from you.

1. Tell your story, your way through our storytelling tool and help us to learn from your experience.

2. Share your ideas for how to improve things for the future through our ideas tool.

What's the point?

Your voice is important and will inform recommendations made to Welsh Government on how to help prevent sepsis and better support those affected by this life-threatening condition.

**Closing date extended to 19.01.2020.**

Please note that this is a public, open forum . Anyone will be able to see contributions made in an open online forum, regardless of whether they have registered to the site or not.

If you'd like to understand how your information will be used, you can view our privacy notice here.

We'd also recommend familiarising yourself with our moderation policy before taking part.

We're also running a quiz to test the public's knowledge of sepsis. Take it here: https://bit.ly/36usfxz

There are many different ways that you can share your story with us: 

  • Write it below with or without a picture
  • Upload a video to Youtube and link to it below
  • Arrange for us to create a video with you - email laura.price@assembly.wales. 

Remember that all stories can be viewed and shared by the public - so if you'd prefer to remain anonymous it's best to write it down and not include a photo. 

When sharing your story, it would be really helpful if you could include:

  1. What was your awareness of Sepsis before you or a loved one was affected by it?
  2. Was Sepsis identified and treated early enough in your view?
  3. What could have been done better that would have made a difference to you or your family? 
  4. What support, if any, do you need now as a result of Sepsis? Are you getting this support? 
All stories posted will be moderated before going live. This is to make sure that this site remains a safe environment for people to share their experiences. We aim to check all stories within 2 days  - therefore there may be a slight delay between submitting your story and seeing it live on the site. 

You need to be signed in to share your story.

  • Sepsis - how life can change so quickly

    by Helenp, 1 day ago

    Until December 20th 2016 neither myself or any family members had heard of sepsis. However, at approx. 20:00 hrs on that day, it came crashing into our lives, with near devastating consequences.

    Following years of pain, suffering and surgeries, followed by 2 unsuccessful rounds of IVF, due to severe endometriosis, I had arrived at the point where it was necessary to give up hope of having a biological family and I opted to have a hysterectomy. This operation was performed laparoscopically in the UHW on Wed 14 December and was meant to provide me with a quality of life... Continue reading

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  • Tiny scratch, big problem.

    by Ella, 1 day ago

    I had never heard of sepsis before it affected me. I scratched my arm picking up firewood. It seemed no big deal at the time. When a pink area and tracking line appeared around the wound, I got some antibiotics from my GP. A few days later my back started hurting. I thought I had just pulled a muscle from picking up my toddler, so I made another GP appointment. By the time I got to the surgery I was feeling very weak, and I was hyperventilating. My ribcage hurt too much to take slow deep breaths. The GP thought... Continue reading

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  • Putting 2+2 together is life saving

    by MrT, 1 day ago

    I had a Prostate biopsy on Thursday the 25th July 2017.

    As part of the procedure, I signed the usual patient agreement highlighting perceived risks, including, I later recalled, an infection rate ( later revisited and understood) put at 1 in 40 (2.5%). This was not foremost in my mind but nevertheless ‘flagged’ with me.

    On Sunday the 28th, I travelled to London with my wife to visit our son for dinner and stayed overnight at an hotel. That evening I felt as if I was coming down with flu like symptoms. The following morning I felt generally unwell but... Continue reading

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  • Sepsis and the aftercare needed

    3 days ago

    **Submitted on behalf of Joanne**

    I had my eyes tested at 3pm for a routine appointment and by midnight I was fighting for my life in hospital from a disease I had not heard of - Sepsis

    After being rushed into hospital and on entering triage and one of the last conscious things I heard from a nurse was her heart rate is 188 , I went from having needles in my arms, bloods taken, x-rays taken, them being told I was to have key hole surgery and then major surgery for 5 hours to save my life as the... Continue reading

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  • I was perfectly well ....

    by Terence, 3 days ago

    *Story submitted on behalf of Heather Duncan*


    I was perfectly well.

    Monday: I was having a busy time as a secondary head teacher. I felt a bit sick.

    I went home and slept.

    The next day I went to get my PhD - I felt ‘distant’ and sweated a lot. I didn’t want to eat. I still felt sick with an upset stomach, but I took part.

    The next day, I was still ill so went to the doctor - i was diagnosed with gastro-enteritis. I slept. By the evening i was semi-conscious. My fiancé called and took me to... Continue reading

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  • Jayne's Story

    by Terence, 3 days ago
    Jayne5

    ** This is a story submitted on behalf of Jayne Carpenter from Merthyr Tydfil. Jayne is keen to share her story and some pictures which some readers may find disturbing but are necessary to illustrate and reflect the absolute reality of her sepsis experience**




    In her own words:

    On the 1st of May 2016, my life & the life of my husband & family
    changed in the most unimaginable way

    Up until that date, I worked full time as a Nurse Practitioner. I exercised daily, loved walking with my husband Rob, & our beloved Weimeraner dog Harriet, and had... Continue reading

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  • The week that saw a total life change

    by Rhian, 6 days ago

    It was the first weekend of September 2017...

    I was a very active 65 year old, I'd just retired from my job and had been ordained as a priest in the Church in Wales two years earlier. I was loving my ministry, feeling that I was at last doing what was truly important to me and was getting more and more confident at what I was doing.

    I had a busy summer in 2017 and was looking forward to a church garden party in our garden on that first weekend in September. I realised retrospectively that in the week leading... Continue reading

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  • Scary how quick it starts

    by Louley, 7 days ago

    3 years ago, We had been out in the morning, all normal. On the way back my husband said the pain in his knees is a lot worse than normal. Infact he said its like red hot pokers in his knees. Once home he was feeling feverish, shivering and this was middle of July. It was very sudden. His breathing was shorter and faster than normal. I knew something wasn't right, so called out of hours GP as it was Saturday. No response after 30 minutes I was worried enough I called an ambulance the response was very quick in... Continue reading

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  • Me and my Daughter

    by Lucy, 8 days ago

    In June 2018 our beautiful baby girl was born after a long labour. 6 weeks later my daughter (Lili) had a raised temperature and was sick, out of hours doctors told me it was viral and nothing to worry about, 2 days later Lili's temperature was very high and not coming down with calpol, after speaking with a family member who is a nurse very involved in Sepsis awareness I rang the doctor who would ring me back, within an hour of noticing her high temperature her condition deteriorated fast, her breathing was laboured she was extremely sleepy and at... Continue reading

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  • ​​​​John's Sepsis Journey

    by jamesdenbigh, 8 days ago

    John's Sepsis Journey

    It was six years ago that I was admitted to the Royal Gwent Hospital for a prostate biopsy as a Day Patient. I did not feel well on my journey home from the hospital so when I returned home I went to bed. I continued to feel unwell for the rest of the day and put this down to post procedure symptoms.

    The following morning of which I have no recollection so have had to rely on my wife's account. I was very confused with a high temperature. My wife contacted the Royal Gwent Hospital Urology Dept... Continue reading

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