Sepsis: a personal story

A learning disability nurse describes how she is working to raise awareness of sepsis so that more people are able to spot the signs earlier and get the treatment they need.

I first became aware of how serious a condition sepsis is from one of our wonderful learning disability community nurses some years ago.

She had a close encounter herself with the disease in 2015, and then her aunt sadly died of organ failure when sepsis went unrecognised. I’ve spoken to friends about sepsis and we think in hindsight that we know from our distant past of other people who have died when it went undiagnosed.

My nurse colleague described having trouble getting medical attention when she was unwell as her signs and symptoms were not recognised by professionals. She had three GP consultations and was told that she had “proper flu”, followed by two GP home visits when she was reassured: “You’ll be fine soon, don’t worry”.

NHS Direct advised her to go to A&E but they sent her home and she returned the next day and was admitted for two weeks, given IV antibiotics which took time to kick in. The whole process took over a week for her to get action even though she knew herself that she was very ill. She had slumped over chairs in the GP surgery and finally fell into A&E. It was thanks to one consultant who recognised sepsis and helped her that she is here today, what a hero!

My colleague realised, and helps others to realise, how difficult it would be for people with a learning disability, autism or both to have a voice, particularly as she couldn’t even as a health professional herself.

LeDer reviews are highlighting that sepsis is affecting people with a learning disability and contributing to their early deaths. In Derbyshire our public health representative has helped our LeDeR steering group to identify actions that had been taken across a number of organisations to raise awareness of sepsis.

Across the country nurses like me and my colleague are helping to alert primary care and other clinicians to this. For example in Derbyshire:

  • Every learning disability update for the learning disability annual health check now mentions sepsis and the findings from the LeDer reviews both local and national.
  • Medical students and adult branch student nurses have learning disability awareness afternoons and we include sepsis on that training.
  • We are working with local people with a learning disability and their families and carers to spot the signs of sepsis by sharing easy read information. Our Learning Disability Partnership Board health sub group is having a dedicated sepsis slot in October and the plans from that will then go to our partnership boards.
  • A learning disability student nurse on placement with us created an easy read leaflet about sepsis to help his own and his fellow students learning and to help us support people with a learning disability.
  • We include sepsis awareness in our health action planning and constipation training for social care providers and carers.
  • Sepsis has been highlighted within the specialist NHS learning disability clinical reference group and information was presented at the learning disability service wide physical health event at the end of last year and shared around all staff.

We are hoping that each small step we take will help us to support people with a learning disability, autism or both and their families and carers recognise the signs of sepsis earlier and in turn help save lives.

Jackie Fleeman

Jackie Fleeman was one of the first learning disability strategic health facilitators in England.

She works in Derbyshire and leads a small team who support GP practices with annual health checks and manages the learning disability acute liaison nurse at Derby Acute Hospital. The team employs three people with a learning disability to support their work with primary care.

Jackie is a LeDer reviewer and has recently completed a project to increase the uptake of screening.

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  1. Darren Fletcher says:

    lovely to hear my fellow LD nurses making a difference. i work in infection control for bradford council at the moment but my background is LD and we are running a study day for our LD providers. I have been tasked with giving a talk on Sepsis and would really appreciate any help or advice you could give me on this area. i attended a recent study day at Salford University and a NHS England employee gave a brilliant talk on Sepsis and mentioned the high incidence which can occur in adults with LD. I know your very busy but any signposting to articles like this or info on this subject would be very much appreciated (i’m struggling a bit!). Thanks for your time 🙂 Darren.

  2. Simon cramp says:

    Hi it lovely to here your blog Jackie you look well . Get in touch my email is I love to here from you

  3. Ms Margaret Attenborrow says:

    Hi Jackie,
    Maggie here from Steps for the Future; I know you are a very busy person, but I would love to meet up with you at some point to explain Steps for the Future, and how we are tackling some of the obsticals, with the Performing Arts and Health & Well Being, some people with LD are faceing. If we could arrange a meeting that would be wonderful.
    Maggie Attenborrow,
    Founder & CEO, Steps for the Future.