Sepsis symptoms: The red flags which show medical emergency for children and adults

Septicaemia, more commonly known as sepsis, is the medical name for blood poisoning by germs such as bacteria, viruses and fungi. Until recently, it was a word we all knew but did not understand fully. However, when sepsis strikes, it is a medical emergency - as I was to discover.

It was October 2023 and my husband was recovering in hospital from major surgery to remove a 3cm cyst from his pancreas. All had gone well. The five-armed robot had assisted the eminent professor in the surgery and my husband’s re-plumbed body - now without a gall bladder, part of the duodenum, the cyst and half the pancreas – was definitely on the mend.  Home beckoned. Then disaster struck.

Suddenly, it became obvious that Paul’s condition had worsened. Still weak from the surgery, the six signs of sepsis struck him suddenly and forcibly.

After a considerable amount of nagging by me, the nurses sprang into action and although the doctor was reluctant initially to use the word, she eventually agreed that the multiple infections were indeed sepsis. For 48 hours nothing was certain but Paul rallied and was able to leave hospital 10 days later than expected.

Home – but where is the GP?

As convalescent homes no longer exist, the hospital discharge letter handed responsibility for the after-care to the GP - but that is where it all went wrong. No one from the surgery contacted us and no District Nurse showed up. Paul was left with only his non-medically-trained wife to empty drainage bags, administer his daily blood thinning injection, remember which medication had to be taken at what time, take his blood pressure, and try to cajole him into eating something as his emaciated body struggled to keep going.

The Receptionist

After many attempts to speak on the phone to the Receptionist at our GPs’ practice, I managed finally to ring at a time when I was not 27th in the queue and explained the situation. Considering the number of training courses available for medical receptionists, I am constantly amazed at the lack of courtesy or empathy from those on the desk at my surgery. Hoping that this was a new or temporary receptionist, I drove to the surgery but found myself facing the same person. 

I took a deep breath and tried again. Patiently, I described sepsis and referred her to the discharge letter in which the hospital doctor had asked for Paul to be monitored by the GP. My request for one of the GPs to visit Paul at home was refused. Slightly less patiently, I stressed that Paul had nearly died and, having lost almost 3 stone, was extremely weak. Another refusal. Paul still had dressings which needed changing and drainage bags to be removed but apparently only the GP can order a District Nurse’s visit. I suggested that I might see the GP on Paul’s behalf – but another ‘no’ came my way. Despite a patient in the queue behind me weighing in, the receptionist refused to be budged. Sepsis meant nothing to her.

Somewhat distraught by now, I went home, wrote a letter to the head of the practice and delivered it by hand. The next day I was informed that a District Nurse would visit - but no doctor.

The District Nurses

The District Nurses were wonderful. Their skills, kindness and complete understanding of sepsis kept us going. When no more dressings were needed, we said our grateful goodbye but were surprised when one arrived the next week. She told us that the Nurses have to call the same surgery telephone number as we call and they did not have time to wait in the telephone queue to sign off the patient. Who thought that was a good idea?

The private GP

Two weeks later, we finally managed to see the surgery phlebotomist for the necessary blood tests. It was an enormous struggle for Paul but we had no alternative. We returned for the results only to be told by the GP that the blood results were extremely worrying, Paul did not seem to be recovering at all and he had no idea what to do. When I suggested that perhaps Paul had developed post-sepsis syndrome, the GP said he had never heard of it and knew very little about sepsis. 

In desperation, I consulted a Private GP who had a much better understanding of sepsis and the blood results. He reassured us that all would be well, the results were to be expected but recovery would be slow and take a year. Even this doctor described sepsis as being rare.

Long Covid and Post Sepsis

Yet this is a condition which 245,000 people in the UK contract each year and from which 48,000 people die, which is more than from breast, bowel and prostate cancers put together. There is a mass of information out there but comparing notes with other people who contracted sepsis while in hospital, I have heard similar stories about the lack of awareness and understanding from the GPs. How can this be possible? This is not a rare condition – indeed the numbers of cases are growing - so there is no excuse for the lack of knowledge.

Back in 2021 the American Medical Association added this to its website: “Surviving severe COVID-19 means surviving viral sepsis. And while there is little published data on long-term outcomes of COVID-19, what is known is that recovering from sepsis caused by other pathogens is a long and difficult process that includes, among other things, increased odds of cognitive impairment and functional limitations.”

The last Government invested £314 million to provide care for people with Long Covid and has established over 100 specialised Long Covid services for adults, children and young people across England. Basically, severe COVID-19 is viral sepsis and it seems extremely unethical to fund long-term convalescence for Covid but not for Sepsis.

The Sepsis Trust

Lobbying to raise vital awareness and understanding of sepsis in the UK is the Sepsis Trust. Launched by Dr Ron Daniels, NHS Consultant in Intensive Care and Sarah Hamilton-Fairley, the charity offers much-needed support and information on its website for patients, relatives and professionals along with the Sepsis Savvy Campaign. Working with ICU Steps – the charity dedicated to intensive care patient support – The Sepsis Trust has devised a hospital pilot project to ensure that there is sepsis information provided for adults in intensive care units. 

There are 25,000 cases of childhood sepsis every year in the UK and The Sepsis Trust has launched its other hospital pilot project, supplying information for parents whose children have survived sepsis. The project has the backing of actor and campaigner, Jason Watkins, who describes his own experience of sepsis, which took the life of his two-and-a-half-year-old daughter, Maude.

In the same way that cancer patients are discharged from hospital and left ‘out in the moonlight’ - worrying that every pain might herald another tumour – sepsis survivors experience frightening flashbacks, fatigue, tiredness (there is a subtle difference between the two), insomnia, brain fog, pain, depression, a poor appetite and the fear that their damaged immune systems might never recover. Support can be found from The Sepsis Trust’s trained nurses, by calling the Helpline (0808 800 0029) which is open every day from 9.30am-4.30pm. Calls can be scheduled online or email support requested.

For some unfathomable reason, GPs always seem reluctant to signpost patients to the specialist charities who would be of enormous benefit to patients and, at the same time, save on the GPs’ time. My husband’s GP did not understand the health consequences of sepsis, yet the Sepsis Trust has information for healthcare professionals on its website and nurses with whom GPs can liaise. 

It is vital that - at the very least - the word ‘sepsis’ should be a red flag to everyone in a GP’s practice from the receptionists to the partners.