FAQs

Here are some of the main questions we’re asked about sepsis. Just click on each question to read the answer.

FREQUENTLY ASKED QUESTIONS

What causes sepsis? Open

Sepsis is a condition caused by your body’s immune system responding abnormally to an infection, which can lead to tissue damage, organ failure, and death. The infection can start anywhere in your body; it may be only in one part, or it may be widespread.
Your immune system usually works to fight any germs (bacteria, viruses, fungi), or to prevent infection. However, for reasons we don’t fully understand, sometimes the immune system goes into overdrive and starts to attack our organs and other tissues. It can happen as a response to any injury or infection, anywhere in the body. It can result from:

  • a chest infection causing pneumonia
  • a urine infection in the bladder
  • a problem in the abdomen, such as a burst ulcer or a hole in the bowel
  • an infected cut or bite
  • a wound from trauma or surgery
  • a leg ulcer or cellulitis

Sepsis can be caused by a huge variety of different germs, like streptococcus, e-coli, MRSA or C diff. Most cases are caused by common bacteria, which normally don’t make us ill.

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How do I know if I might have sepsis? Open

In adults, it may feel like you have flu, gastroenteritis or a chest infection at first. Early symptoms include fever, chills and shivering, a fast heartbeat and quick breathing. Symptoms of sepsis or septic shock include feeling dizzy or faint, confusion or disorientation, nausea and vomiting, diarrhoea and cold, clammy and pale or mottled skin.

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What are the symptoms of sepsis in children? Open

Any child who is breathing very fast, has a ‘fit’ or convulsion, or looks mottled, bluish, or pale, or has a rash that does not fade when you press it, may have sepsis. Any baby or child under 5 years old who is not feeding, vomiting repeatedly or hasn’t had a wee or wet nappy for 12 hours, might have sepsis.

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What should I do if I think someone has sepsis? Open

Don’t wait, especially if they seem to be deteriorating. If someone has one or more of the sepsis symptoms, call 999. If you’re concerned about an infection, call 111. Or contact your GP and just ask: Could it be sepsis?

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Are some people at greater risk of getting sepsis? Open

We still don’t know why some people who get an infection develop sepsis and others don’t. People are more likely to develop sepsis after a viral illness like a cold, or a minor injury. But it can affect anyone, regardless of age or state of health. However, some people are more likely to get sepsis, including those who:

  • are very young or very old
  • are diabetic
  • are on long-term steroids or on drugs to treat cancer or other conditions
  • have had an organ transplant and are on anti-rejection drugs
  • are malnourished (your body hasn’t had enough food)
  • have serious liver disease
  • have a serious illness which affects your immune system (the way your body protects itself from infection), such as leukaemia
  • have an infection or a complication after an operation
  • are pregnant or have just given birth
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I‘ve just come out of hospital after sepsis. How should I expect to feel? Open

Generally, when you get home:

  • you will be very tired and will need to sleep and rest a lot. You have been seriously ill and your body and mind need time to recover
  • you will be very weak, may have lost a lot of weight and may find it difficult to walk around. You may also find it tiring talking to people. Begin by building up your activity slowly and rest when you are tired
  • your skin may be dry, itchy and peel. It may help to put moisturiser on. Your nails may also break easily
  • you may notice changes to your hair and some may fall out weeks after your illness. It is unlikely it will all fall out; it usually just gets very thin and then starts to grow again
  • you might find it difficult to eat again. Build up slowly by having small meals and healthy snacks when you feel like it
  • it can feel very frustrating once you are home, because all the things you could do easily before, like walking, eating or even breathing, can suddenly feel difficult or frightening. You have to remember how sick you have been and see how much progress you have made

Please go to our Resources page to view ‘Sepsis: a Guide for Patients and Relatives’ and ‘Survivors’ Information’.

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When should I think about going back to work? Open

Going back to work can be a daunting prospect! Some of the problems that can occur as a result of sepsis – such as fatigue, poor memory and difficulty concentrating – can make resuming work difficult or impossible.

You may have lost your confidence and feel unprepared for the stress of work. You may also still have outpatient appointments, which will dictate how much you can work.

Most employers will be happy to allow you to start back on reduced hours, gradually increasing them until you are feeling fit enough to work your usual hours. This is known as a phased return.

You could also consider these options:

  • To permanently reduce your hours
  • To look at changing your duties to ones you feel able to perform
  • To consider a new job that offers the right conditions for your needs. It may help to direct your employer to our information on recovery, such as our Returning to Work Following Critical Illness guide

For more advice on issues relating to employment, visit Citizens Advice work.

Finances may be stretched while you are recovering. Many employers will continue paying your salary for several months and then ask for your situation to be reviewed. Others will only pay for a few weeks. Some people will have to rely on statutory sick pay.

The government now provides a benefit called ‘Personal Independence Payment (PIP)’ which 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.

Citizens Advice benefits web pages provide lots of useful information on claiming benefits and in some case will assist with claims and form filling.

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I have started to lose my hair – could this be related to my sepsis? Open

Hair loss can occur after sepsis, and can’t be treated, but it is usually temporary. It often starts several weeks after sepsis and lasts about 3 to 6 months. It’s normal to shed 30-150 hairs daily, but hair regrows automatically. In the meantime, handle hair gently, and avoid over-vigorous brushing, combing and scalp massage. You should also ensure a nutritious diet, with plenty of protein, fruit and vegetables.

The doctor may check your thyroid function and levels of iron, vitamin B12 and folic acid, as any deficiency in these can slow hair growth.

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Can you get sepsis more than once? Open

There has been some research into sepsis survivors which found that, over the following year at least, some survivors are more prone to contracting another infection. As with any infection, there is a risk of sepsis. But most people who’ve had sepsis before seek help early on and are treated promptly.

If you (or your loved one) have an infection, then you should keep a close eye for any signs of sepsis and seek help urgently if worried.

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I am getting one infection after another. Has sepsis affected my immunity? Open

Some survivors’ immune systems are not as effective in the year following their sepsis.  As a result, they are more prone to infection. This could be coughs and colds, repeated water infections or a recurrent wound infection. But for most people, early medical consultation and treatment with antibiotics treat the infection and it doesn’t progress to anything worse.

Do make sure you and your loved ones know the signs of sepsis, never ignore an infection and seek urgent medical attention if concerned.

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I am unhappy about the care I or my relative received from my doctor or the hospital. How do I go about raising concerns? Open

You don’t have to make a complaint informally before making a formal complaint. However, if something has gone wrong with the healthcare provided to you or a loved one, it’s usually best to discuss your concerns with the medical staff as soon as possible, especially if your priority is to have something urgently put right.

Talk to the staff concerned, or a manager, and explain why you are unhappy. If you prefer, contact the Patient Advice and Liaison Service (PALS) and ask them to investigate. Ask your local hospital trust for contact details.

If you are considering taking legal action, we have compiled a list of carefully chosen companies who may be able to advise you.

The charity Action against Medical Accidents (AvMA) provides free specialist advice on making a complaint, inquests and other procedures when harm may have been caused. Specially trained advisers will help you consider the options available and their website explains how to make a complaint.

Citizens Advice also provide useful guidance on how to proceed with a complaint.

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Why is it that no matter how much rest I get, I am tired all the time? Open

Extreme mental and physical tiredness that is not relieved by rest is known as fatigue, and this is one of the most common problems when recovering from sepsis. Some survivors only experience fatigue for a few weeks but others will feel tired for months, even years.

Fatigue is different to the ordinary tiredness experienced after a hard day’s work or strenuous exercise. You might feel extremely tired after very little activity, or wake up feeling as tired as you did when you went to sleep.

The good news is that whilst fatigue cannot be taken away entirely, there are a number of strategies that can help manage it.

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What exercises can I do to help my recovery? Open

Your joints and muscles may be painful, stiff and weak, but it’s important that you maintain function and build their strength back up. This may be difficult at first because of fatigue, pain and muscle weakness but you can start with some gentle low impact exercises.

These home exercises are ideal if you’re not very active but want to improve your health, lift your mood and remain independent. They are easy, gentle, and can be done indoors. Take things steadily at first and gradually build up what you are doing. If anything is particularly painful, seek advice from your doctor or physiotherapist.

NHS Living Well – Low impact exercise
Website: www.nhs.uk

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What we do and do not do

What is the sepsis support helpline? Open
  • Our helpline is a free confidential service providing support to anyone affected by sepsis
  • Trained nurses with knowledge and experience of sepsis, sepsis recovery and critical care staff the helpline. The first person you speak to may not be a trained nurse but one will get back to you within two workings days
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What we do Open
  • Provide clear information about sepsis
  • Help understand sepsis recovery and suggest options that may help with some of the problems you may be experiencing.
  • Signpost to other appropriate services that can offer advice and support
  • Listen empathetically to your story and help you understand what you may have experienced
  • Provide information on how to raise concerns about care or treatment
  • If you have lost someone from sepsis, we can help you understand what may have happened to your loved one and provide the opportunity to ask questions
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What we do not do Open
  • Provide advice specific to any individual, either general, pharmaceutical or medical
  • Make referrals on behalf of enquirers
  • Seek to replace or undermine the relationship between you and your healthcare professional
  • Offer treatment, diagnosis or tests
  • Provide financial assistance
  • Become directly involved in individual complaints or concerns
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USEFUL LINKS

Here are some websites that you may find useful Open

HEALTH AND WELLBEING

NHS – One you
Website – https://www.nhs.uk/oneyou/

British Association for Counselling and Psychotherapy (BACP)
Website – www.itsgoodtotalk.org.uk

Samaritans
Website – www.samaritans.org/how-we-can-help-you/contact-us

Mind
Website – https://www.mind.org.uk/information-support/

Young minds
Website – https://youngminds.org.uk/find-help/feelings-and-symptoms/

Medical Buddy
Website – https://medicalbuddy.org.uk/

Climbing Out
Click here for more information.

FINANCIAL ADVICE AND SUPPORT

Citizens Advice Bureau
Website – www.citizensadvice.org.uk

Turn2us
Website – https://www.turn2us.org.uk/

RAISING CONCERNS

NHS – Complaints and Advocacy
Website – http://nhscomplaintsadvocacy.org/

Patient Association
Website – https://www.patients-association.org.uk/

Healthwatch             
Website – https://www.healthwatch.co.uk/

BEREAVEMENT SUPPORT

Cruse Bereavement
Website – www.cruse.org.uk/bereavement-services/get-help

Child Death Helpline
Website – www.childdeathhelpline.org.uk

The Good Grief Trust
Website – www.thegoodgrieftrust.org/

SUPPORT FOLLOWING AMPUTATION

Amputation Foundation
Website – http://amputationfoundation.org/

Limbless Association
Website – http://www.limbless-association.org/

CRITICAL CARE

Critical Care Recovery
Website – www.criticalcarerecovery.com

ICU Steps
Website – www.icusteps.com

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