Recovery after Sepsis & Post Sepsis Syndrome

Many sepsis survivors will find their recovery challenging after they leave hospital.

Around 40% of people who develop sepsis are estimated to suffer physical, cognitive, and/or psychological after effects.

For most people, these effects will only last a few weeks, but others can face a long road to recovery and develop Post Sepsis Syndrome (PSS).

You can find key information about sepsis recovery, what PSS is and how it affects people on this page, as well as overview of our support services, and answers to frequently asked questions.

If you are struggling with your recovery, or simply want more information about what to expect you can also contact our Support Nurses via phone or email.

RECOVERY SUPPORT AND RETURNING TO WORK AFTER SEPSIS

You may find it helpful to attend our online or face-to-face sepsis recovery support groups.

These sessions operate on a peer-support model, where you and your loved ones can discuss any challenges you might have encountered with your recovery journey.

Weakness, fatigue, tiredness, and cognitive issues are all common symptoms people experience after having sepsis – which can make returning to work difficult, or even impossible.

We have a dedicated advice page on returning to work, and dealing with financial worries.

COMMON PROBLEMS PEOPLE ENCOUNTER FOLLOWING SEPSIS

Many people will find recovering from sepsis difficult and can have a number of symptoms develop in the weeks or months after they leave hospital.

Common symptoms people suffer fall into three categories: physical, psychological, and cognitive.

The physical symptoms are:

  • Lethargy/excessive tiredness
  • Poor mobility/muscle weakness
  • Breathlessness/chest pains
  • Swollen limbs (excessive fluid in the tissues)
  • Joint and muscle pains
  • Insomnia
  • Hair loss
  • Dry/flaking skin and nails
  • Taste changes
  • Poor appetite
  • Changes in vision
  • Changes in sensation in limbs
  • Repeated infections from the original site or a new infection
  • Reduced kidney function
  • Feeling cold
  • Excessive sweating

The psychological and cognitive symptoms are:

  • Anxiety/fear of sepsis recurring
  • Depression
  • Flashbacks
  • Nightmares
  • Insomnia (due to stress or anxiety)
  • PTSD (Post Traumatic Stress Disorder)
  • Poor concentration
  • Short term memory loss
  • Mood swings

POST SEPSIS SYNDROME


Some people may find their recovery from sepsis is longer and more problematic than expected and can encounter all or a variety of the symptoms listed above.

Post Sepsis Syndrome (PSS) describes a variable set of ongoing issues that people encounter for a prolonged period of time following sepsis.

Not everyone who gets sepsis will get PSS, but it can impact anyone regardless of their age or their health before they became ill.

FAQs

WILL I GET SEPSIS AGAIN? Open

Evidence does suggest that for a period of time after recovery there is a heightened risk of repeat infection.

Some sepsis survivors find that their immune system is not as effective in the year following their recovery.

As a result, they get one infection after another, whether it’s coughs and colds, repeated water infections, or a recurring wound infection.

The infections may develop in a similar part of the body that caused the first episode of sepsis, this can be a coincidence but it also might point to an underlying health condition.

Any increase in the number of infections can be worrying as many people fear that they may get sepsis again.

In most cases, early medical consultation and treatment with antibiotics treat the infection and it doesn’t progress to anything worse. But it’s important not to neglect any infections. Always make sure you and those close to you know the signs of sepsis, and seek urgent medical attention if concerned.

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WHAT CAUSES POST SEPSIS SYNDROME? Open

The exact cause of PSS is not fully understood, but it is thought to involve a combination of factors, including the body’s immune response, changes in blood flow to organs, and the effects of medical interventions received during sepsis treatment.

The severity of the original infection or injury, the length of the hospital stay, the treatment administered and past medical history can impact recovery time.

If someone suffered from complex organ damage during their illness, then they are more likely to experience recovery complications.

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WHAT SHOULD YOU DO IF YOU THINK YOU HAVE POST SEPSIS SYNDROME? Open

Anyone concerned they might have PSS should speak to their GP, or contact our Support Nurses who can provide additional information and signposting.

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HOW IS POST SEPSIS SYNDROME DIAGNOSED AND WHAT TREATMENT IS AVAILABLE? Open

There is yet to be a set of specific diagnostic criteria for PSS, and despite the work of the UKST to raise awareness, not all doctors know about it.

Therefore, it may be helpful to take one of our booklets with you or print out the information on this page before visiting a GP.

It is important that doctors assess symptoms and exclude any other causes of the problems you or a loved one may be experiencing.

PSS management by healthcare professionals typically involves addressing the specific symptoms experienced by the individual, and may include physical rehabilitation, cognitive rehabilitation, psychological counselling, and supportive care to help improve the patient’s overall wellbeing.

Typically, most people with PSS will get better with time. In the meantime, it’s a case of managing the individual problems and looking after yourself while you are recovering.

Tell your family and friends about PSS, explain how you feel and give them information to read so they can understand what you’re going through – as you may look well, but feel unwell. It will help you all get through this difficult time.

Above all, remind yourself that as horrible as PSS is, you’re not alone, and these problems are part of the recovery process.

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WHAT SUPPORT DOES THE UK SEPSIS TRUST OFFER SEPSIS SURVIVORS? Open

We offer a wide array of resources for people recovering from sepsis, and their loved ones, including support groups.

You can find our recovery resources here.

Relatives can find support for their loved ones struggling to recover from sepsis here.

You may also find it comforting to join our Facebook peer support group, which is moderated by our Support Nurses.

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IS POST SEPSIS SYNDROME A DISABILTY? Open

PSS is not currently recognised as a disability in the UK.

However, the symptoms and effects of post sepsis syndrome can vary widely and may impact an individual’s ability to work or carry out normal daily activities.

As such, individuals with post sepsis syndrome may be eligible for disability benefits and support through the UK’s welfare system. It is important to speak with a healthcare professional and/or benefits advisor to determine eligibility and available support.

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HOW LONG DOES POST SEPSIS SYNDROME LAST? Open

Each case of PSS is different. Cases commonly last between 6-18 months, but for a minority recovery can take much longer. For the few who take a long time to recover it can last for several years, or even impact them for the rest of their life.

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HOW DOES POST SEPSIS SYNDROME IMPACT THE ELDERLY? Open

The impact of PSS on the elderly population can be particularly challenging due to their age-related vulnerabilities.

Elderly individuals who were already frail or had pre-existing health conditions may experience more severe physical impairments.

Elderly people also have an increased risk of recurrent infections.

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