Sepsis kills and maims quickly and ruthlessly. But if diagnosed early, it is fully treatable.
The Sepsis Trust is a charity which does great work in raising awareness of sepsis, but CEO Ron Daniels and his team rely on volunteers around the country to help spread the message.
One such volunteer is Dee Struthers, from the Isle Of Man.
Here, Dee tells the moving story of why she became a volunteer, explains what the role entails, and why volunteers are so important to the UK Sepsis Trust.
It has now been 3 years since I first became affected by sepsis. As a family of 4 we did know about meningitis and septicaemia but had never heard of Sepsis. Despite both my husband and I being involved in the health care sector we were ignorant of the nature and potential impact of sepsis. I had been a Nursery Nurse for 6 years in a medical children’s ward and had nursed children with meningitis in the early 1980’s while my husband is a nurse educator with over 30 years experiences. Why had we never known about sepsis?
On Thursday 18th July 2013 our lives changed forever…Sepsis took our beautiful 18 year old daughter Ann, leaving us devastated. It felt like Sepsis had taken Ann, leaving us as Sepsis survivors, (in my eye,) as we were suffering with all the Post Traumatic symptoms that survivors of sepsis experience, difficulty sleeping, loss of appetite, tiredness, fatigue, lack of concentration, it felt that we had lost a limb. Many of these feelings can be associated with the loss of a relative; however it is a shocking comparison due to the suddenness which surrounds the loss through sepsis, from healthy to death in a short time. Combined with the psychological and emotional feelings of bereavement, shock, anger, helplessness, loss of control and a broken heart, caused us to somewhat withdraw from our social world.
A few weeks after Ann’s funeral the only thing I felt I had left that I could do for our Daughter, was to do something to Raise Awareness about Sepsis in Ann’s memory. It was then through searching the internet I first became aware of UK Sepsis Trust.
However after my initial burst of “I have to do something,” I now realise that my husband’s caution was justified. We both had just come off Face Book due to it being unbearable to see others’ family lives continuing as normal and ours so heartbreakingly different to how we had hoped. Not engaging in other family activities did not bode well for being a volunteer. We as a family (now 3) my husband younger daughter and myself, were neither emotionally or physically ready to follow through my initial enquiries about becoming a volunteer. Even requesting ‘a table for 3 please’, in a restaurant caused a resurgence of grief. This still hurts, especially when they take the fourth place setting away.
We did do a few things 11 months later to raise awareness and for funds for UKST in the company of those who were closely linked to our situation, friends, neighbours and work colleagues. My husband completed the Isle of Man Parish Walk which is 85 miles to be walked in under 24 hours, no mean feat but he was determined to do it for Ann. We also did an Ice Bucket Challenge and A World Sepsis Day coffee morning in total we raised £5000. But for us it was never about the amount we could raise but about telling people about Sepsis and the signs and symptoms to look out for. So we quietly in a low key way at every opportunity would share the Sepsis Symptoms, albeit to those closest to us.
We now realise that it was extremely important for us to go through our grieving process, I appreciate that everyone is different and time has no meaning when it comes to loss of your child or loved one but it is really important that members of your family are in the right place with you to be able to share your story. We closely watched our younger daughter’s reaction to any suggestions made about looking at pictures of Ann or emotional poems that I wrote for posting in the local press at the 1 year anniversary. As she is very sensitive and picks up on everyone’s feelings, her silence could be telling. We continued to include Ann in our family and friends conversations and this I feel has helped prepare our now 17 year old daughter for our next step.
This April 2016, 2 and half years later, my husband informed me that Dr Ron Daniels was doing a guest presentation as a visitor on the island. I immediately asked if I could attend as a lay member. This was agreed. We met Dr Ron Daniels and shared our positions re sepsis, Ron suggested that I think again about becoming a volunteer representative. He said I “could do as much or as little as I felt up to, step in or step back” - wise comments which I keep reminding myself to do.
After this meeting with Ron, he then put me back in touch with Admin staff in the UKST office. Being at home each day did result in me having a quick anticipatory time frame for responses to emails and communications. I had to understand the nature of the operation of a charity and the fulltime employment commitments of the admin workers in the UK also the difficulties that the IOM and UK have on charity status, re raising money. After a settling in period I have to say they are an amazing bunch of people who are inspirational but also very caring in how they pointed out the potential emotional hazards to us.
Sharing Our Story
One early task was the creation of Ann’s Story banner. This was prompted by the suggestion of the power and impact our story makes. This then required me to write a summary of the key events about sepsis and how it affected Ann. The banner also required me to select pictures of Ann. This was quite cathartic as it was the first time I had constructed a written and pictorial account of Ann. From the moment Ann’s Banner arrived, I was emotional, yes, but more in an overwhelmed and tearful manner of pride. Pride for Ann, but also that I had made her more to share with others. I also felt empowered and back in control, to some degree.
It has taken 3 years for all 3 of us to be sufficiently emotionally ready to support me to become a UK Sepsis Trust volunteer representative. I have never felt stronger, more determined or driven to raise Sepsis Awareness. Taking on this role has given me a purpose now and sharing Ann’s Story is so powerful and fills me with pride. We still miss her dearly but know she is still with us in our hearts.
My agenda on the Isle of Man is slightly different to volunteers in the UK. We have our own government with different rules, regulations and legislation so one of my hopes is that we will soon become affiliated to UKST, by having our own island branch. This will open up more avenues and “Manxify” our awareness campaign in Ann’s name so with the help guidance and support of the trust. We are pushing ahead with these plans.
I now realise the value of social media re Face Book and Twitter, when used appropriately, to spread and share stories about sepsis but also in supporting others. Our story was picked up by our local radio station 3FM after I started sharing Ann’s banner with my friends on Face Book. They invited me in to record an interview and our story was broadcast that week.
I approached our local hospital and asked if I could place a stall at reception area, which I would man, sharing Ann’s story with the public and giving out Sepsis leaflets and Symptom cards and Raising Sepsis Awareness. This proved to be a very powerful and impartial as well as emotional week, not only to the public but also to hospital medical, nursing and administration staff but also more importantly because this was the hospital where our daughter was nursed by some of the medics and nurses.
Whilst talking to people I was again approached by a journalist from another local Manx Radio station who invited my husband and I along to the station to tell our story. This was put out on air the next day and I had many people come up to me and ask “ Are you the lady that was speaking on the radio?” I was blown away by the amount of sepsis awareness I had raised that week.
My next planned event will be on 13th September for World Sepsis Day. The hospital has agreed to Co-coordinate the event and we plan to have a launch for another Sepsis Awareness raising week whereby I have been invited along to a training forum and will speak to staff about our story. I also plan to go along and speak with Student Nurses in the training centre. I have purchased a “The Sepsis Game, “ to use as a training tool.
One of my main aims is that a pamphlet with MANNX/ UKST is to be printed and placed in our local newspaper to be delivered to ever single home on the island. This I feel would go some way to educating the public about becoming more Sepsis Aware.
I also hope to write and publish a short article about Sepsis Awareness in our local magazine Manx tales. This magazine is also distributed to all the island homes, so is another way of educating everyone about Sepsis
As there has been no Sepsis awareness on the Island until I started my tentative steps back in April, It is my intention to keep up a sustained Sepsis campagne, by agreeing to take Ann’s Story Banner wherever Awareness needs to be raise eg. Clinics, Dentists, Schools, Police, Prison, Sheltered Housing complexes, Nursing Homes… the list goes on!
I may also enlist a few volunteers to assist organise events. Sounds a lot but really on a small island education should be much easier and quicker.
How important is my Role?
Many people have never heard of Sepsis or are confused by other medical condition such as Septicaemia or Meningitis.
Education is key, I feel the public need to be more educated and take more responsibility for their own health and welfare. Doctors are only human and can make mistakes like the rest of us, how can they possibly know everything about every medical condition in the world but we can become more sepsis aware and should not be afraid to ask questions if we are at all concerned.
The Symptoms to look out for
The UK Sepsis Trust have a website, showing everything you need to know about sepsis: www.sepsis trust.org
Signs and symptoms can vary for age groups and there is a separate list to check for under 5’s.
However the main ones are the Sepsis Six which are as follows: