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Sepsis and Post Sepsis Syndrome

This leaflet provides information and advice for patients who have had sepsis. It gives an overview of what sepsis is, how it is diagnosed and treated while in hospital. It gives advice on post sepsis syndrome and what you can expect when you get home from hospital and what to look out for in the future.

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Information for patients
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This leaflet provides information and advice for patients who have had sepsis. It gives an overview of what sepsis is, how it is diagnosed and treated while in hospital.  It gives advice on post sepsis syndrome and what you can expect when you get home from hospital and what to look out for in the future.

What is Sepsis?

Sepsis is a rare complication and can occur when an infection becomes serious. Not all infections will lead to sepsis, but when they do, it can lead to organ failure and death. Recognising sepsis early is essential to improve survival as the body’s immune system goes into overdrive. This can lead to a major decrease in blood pressure affecting the blood supply to vital organs such as the brain, heart and kidneys. 

Infections that give rise to sepsis are common and include lung infections (pneumonia), urine/kidney infections, infections in wounds, bites and problems like burst ulcers.

How is Sepsis diagnosed?

Sepsis is a clinical diagnosis and commonly presents with a low blood pressure, high breathing rate, high heart rate and an abnormal temperature (high or low). Other signs include confusion (or delirium), shivering and aches, not passing urine (or very small amounts), or looking pale/unwell.

Other tests can help determine the type and source of infection you have, such as:

  • Blood tests.
  • Urine or stool samples.
  • A wound culture – where a small sample of tissue, skin or fluid is taken from the affected area for testing.
  • Respiratory secretion testing – taking a sample of saliva, phlegm or mucus.
  • Imaging studies – such as X-ray, ultrasound scan or computerised tomography (CT scan).

Who can get Sepsis?

Anyone can get sepsis, but it is a higher risk in older people, those with long term health conditions such as diabetes, or problems with the kidneys, liver or heart. It is also a high risk in those with a weakened immune system, either from chemotherapy, immunotherapy or long-term steroids/immunosuppressants.

What to expect while in hospital?

Sepsis can make you feel very unwell. If sepsis is suspected, early antibiotics (within 1 hour) is key to improving survival. Healthcare teams are trained in early sepsis recognition and will aim to give antibiotics as soon as possible. This may be delayed if gaining intravenous access is difficult, however, the team will escalate their concerns.

Other common treatments within the Sepsis Bundle include:

  1. An early review by a senior doctor, to see if there is an alternative diagnosis. They will also ensure the right antibiotic is given to kill the bacteria and prevent it from spreading.
  2. Give oxygen if required – you will be attached to a machine that reads your oxygen saturation level and this is used to help determine if oxygen is needed.
  3. Blood tests will be taken – this will include blood cultures. These are to ensure we are using the correct antibiotics but also to help us to understand how the infection is compromising other major organs so we can treat accordingly.
  4. You may require intravenous fluids (IVT) if you are dehydrated and have low blood pressure. Intravenous fluids are the administration of fluids directly into the vein via a small cannula.
  5. A clear plan will be made for ongoing care and monitoring – this will include regular observations of your blood pressure, heart rate, oxygen saturations, monitoring of fluid input and monitoring of urinary output. If your blood pressure is low or you are passing too little urine you are at risk of developing an Acute Kidney Injury (AKI). This can be treated by improving the amount of fluid in the body by giving fluids and monitoring how much urine the body is making by inserting a catheter.
  6. If you are concerned about your condition and feel that you are getting worse despite escalating to the ward doctors and nursing team; please access our Call for Concern service by contacting the hospital switchboard 01642 617617 and requesting a call for concern, you will be put through to a specialist service who will be able to support you or your relative.

Critical Care and Sepsis

If you have sepsis, you will usually receive close monitoring whilst within hospital. If escalation is appropriate, you may need to be admitted to Critical Care for treatments to keep you safe. Sometimes due to a poor baseline function or significant health care burden from your medical conditions, this may not be a suitable course of treatment. This decision will be discussed around limits of escalation.

You may require an admission to Critical Care as a result of sepsis. Critical Care is where the most unwell patients in the hospital are treated. Critical Care includes both the Intensive Care Unit (ICU) and High Dependency Unit (HDU).

In Critical Care, you will receive treatment to support one or more of your organs which may be failing.

This could be support for the following organs:

  • The lungs, which includes the use of a ventilator (breathing machine).
  • Heart and circulation issues requires very strong medication to support the blood pressure and heart rate.
  • If you are struggling to produce urine you may be placed on to a dialysis machine to take over your kidney function

You will require invasive lines, which will allow for close monitoring. All of these treatments place a burden on the body and the person may be significantly weaker after this admission and need a lot of help and time to recover.

What happens after Sepsis?

While many will recover from sepsis and severe infections without any problems, some will not. Post Sepsis Syndrome can affect anyone and may last anywhere from 6 months to years afterwards.

The reasons why some people get Post Sepsis Syndrome are poorly understood, but these can have life-changing effects on you and your family. These effects can be physical or psychological.

Physical symptoms/effects of PSS can include:

  • Lethargy/Excessive tiredness.
  • Poor mobility/muscle weakness.
  • Poor appetite
  • Swollen limbs (excessive fluids in the tissue).
  • Joint and muscle pains.
  • Insomnia.
  • Hair loss/may feel thinner.
  • Repeated infections from the original site or a new infection.
  • Taste changes/teeth may be more brittle.
  • Breathlessness/Chest pains.
  • Change in vision.
  • Changes in sensation in limbs.
  • Excessive sweating.
  • Reduced kidney functions.
  • Dry/ flaking skin and nails.
  • Feeling cold.

Psychological and emotional symptoms of PSS:

  • Mood swings.
  • Depression.
  • Flashbacks.
  • Insomnia (due to stress or anxiety).
  • Anxiety/fear of sepsis recurring/panic attacks.
  • Nightmares.
  • Poor concentration.
  • Short term memory loss.
  • PTSD (post-traumatic stress disorder).

For further advice or information, you can access support through The UK Sepsis Trust (sepsistrust.org) are a national charity that provides support for people or carers affected by sepsis. It runs a free helpline (0808 800 0029) and online support groups for information.

What can you expect during recovery?

Going home after a serious illness can be very scary and frustrating. Everyone is different and will recover at a different pace. Most people recover from PSS but it can be a difficult time even though you have left the hospital and look better, you are still not feeling very well.

Try not to push yourself too hard as this may delay your recovery. Listen to your body if you become tired, stop and rest. You may feel more emotional than normal or low in mood and these are quite normal after a life changing experience. This may cause problems with your employer or family who expect you to be back to normal. It may help to share this leaflet with them or ask them to visit the UK Sepsis Trust website (provided at the end of the leaflet).

Speak to your GP for advice and help.

What do I do if the infection recurs?

Some people who had sepsis find that they are more prone to infections afterwards. This is because the immune system is not as effective in the years following sepsis. This is particularly true if you have underlying health problems. This can be very frightening as you may be concerned that every time you have an infection you could get sepsis again.

It is important to get medical attention if you feel unwell, experience obvious symptoms of an infection or have a high temperature. Prompt treatment with antibiotics will usually prevent any recurrence of sepsis.

However, it is important for you and people close to you to be aware of this problem, not to neglect any infections you have but to make sure they know the Signs of Sepsis:

S – slurred speech or confusion.

E – extreme shivering or muscle pain.

P – passing no urine (in a day).

S – severe breathlessness.

I – it feels like you are going to die.

S – skin mottled or discoloured.

When can I return to work?

You may be worried about returning to work. If you feel you are not fully recovered, you should speak to your employer to see if you can have a phased return to work or change your role to something that would be more suitable.

Sick pay varies between employers. There is a benefit called ‘Personal Independence Payment (PIP)’ that is designed for people who have experienced a life changing illness or disability.

However, you can only claim after a three-month period from the start of your illness. Please see the government website within further information for more details.

Further Information

  • Citizens Advice’s benefits web pages provide lots of useful information on claiming benefits and in some cases will assist with claims and form filling

References

•        NHS UK Treatment and recovery from sepsis –

https://www.nhs.uk/conditions/sepsis/treatment-and-recovery/

•        UK Sepsis Trust Post Sepsis Syndrome | The UK Sepsis Trust –

https://sepsistrust.org/get-support/sepsis-recovery-post-sepsis-syndrome/

•         Sepsis.org Post-Sepsis Syndrome – Sepsis Alliance –

Post-Sepsis Syndrome

Patient Experience Team (PET)

Patient Experience Team (PET)

North Tees and Hartlepool NHS Foundation Trust would like your feedback. If you would like to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Team who will help you to do this.

This service is based at the University Hospital of North Tees but also covers the University Hospital of Hartlepool, our community hospitals and community health services.

North Tees and Hartlepool NHS Foundation Trust

Telephone: 01642 624719 / Freephone: 0800 092 0084

Email: [email protected]

Monday to Friday, 9:30 am to 4:00 pm

Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard (numbers below).

Leaflet Reference: PI062 version 1
Date for Review: 17/04/2029

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