THE UK SEPSIS TRUST IS
HERE TO SUPPORT YOU

People can be affected by SEPSIS in many ways. You or someone close to you may have had SEPSIS or you may have lost a loved one as a result of SEPSIS. For whatever reason you have been affected, the UK Sepsis Trust support team is here to help you. You will find lots of information on our support pages.

You can also contact us by email or phone and speak to one of our trained SEPSIS support nurses who can offer support and advice.

AN OVERVIEW
OF SEPSIS

SEPSIS is the body’s overwhelming and life-threatening response to infection that can lead to tissue damage, organ failure, and death. In other words, it’s your body’s immune system over responding to an infection.

Your immune system usually works to fight any germs (bacteria, viruses, fungi), or to prevent infection. If an infection does occur, your immune system will try to fight it, although you may need help with medication such as antibiotics, antivirals, antifungals. However, for reasons we don’t fully understand, sometimes the immune system has an overwhelming response and starts to attack our organs and other tissues.

ARE YOU LOOKING FOR
A SUPPORT GROUP?

The UK Sepsis Trust run a few support groups around the country. These are informal meetings where anyone who has been affected by SEPSIS can come along and meet others and share their stories. There are a limited number of groups at present but look out here as we will be adding more.

Can’t find a support group near you? Take a look at some recommended Facebook groups or head over to The UK Sepsis Trust Forum.

Enter your postcode to find a support group or event near you.

Your nearest groups / events

South Wales Support Group

Date: Monday 11th September 5.30 7.30 pm

Phone: 0800 389 6255

Address: Morrison Supermarket, Newport Road, Cardiff, CF23 9YG

York SEPSIS Support Group

Date: TBA

Phone: 0800 389 6255

Address: Monks Cross Shopping Centre, Monks Cross Dr, Huntington, York YO32 9GX. Meet at Information Centre (Next to New Look).

North West Support Group

Date: TBA

Phone: 0800 389 6255

Address: Knutsford Methodist Church, Princess St, Knutsford, WA16 6BY

CHLOE'S STORY
It's just a cold...

Read her story

Chloe had what we thought was a cold/ chest infection. Lethargic, aches and pains typical teenager moans and groans .. Spent the evening with one of her closest friends laughing and joking and Looking forward to New Year’s Eve celebrations.

They were both together as Chloe deteriorated, we then phoned for the emergency services unknown to us what was happening! Chloe suffered a cardiac arrest in front of us, and having to try to perform CPR on your own daughter is indescribable!

The emergency staff were amazing and tried their utmost to save our Chloe, to no avail. 5 months later at her inquest in May. We heard that Chloe had signs of an e-coli/ urine infection, which turned to SEPSIS, led to multi organ failure, then a cardiac arrest.

Life hasn’t been the same since……

JULIE CARMAN
CYCLING ACCIDENT

Play video

ROSIE’S STORY
MORE THAN JUST CHICKEN POX

Read her story

Rosie had chicken pox and it was progressing normally until 4 days in when she woke up in pain all over her body especially her tummy which was red and tender. She also had a very high temperature which I was struggling to get down.

I knew something was very wrong but three different GPs told me she was fine. 3 days later Rosie was incoherent, very thirsty but not weeing and a rash was rising up her tummy. I called 999 and the paramedic told me she was fine. Luckily he agreed to take her to the hospital and it was there that she was immediately diagnosed as being in septic shock.

She received antibiotics and fluids immediately but unfortunately, her blood pressure was still dangerously low so she was sedated and put on a ventilator. She was then transferred to intensive care at another hospital. She spent 4 days sedated and ventilated on ICU and a week later we came home.

We have been so lucky that Rosie has made a full recovery. Although her diagnosis came very late it just shows how identification and prompt treatment saves lives.

FAQs

I have been told that I have had SEPSIS, what is SEPSIS?

SEPSIS is the body’s overwhelming and life-threatening response to infection that can lead to tissue damage, organ failure, and death. In other words, it’s your body’s immune system over responding to an infection.

Your immune system usually works to fight any germs (bacteria, viruses, fungi), or to prevent infection. If an infection does occur, your immune system will try to fight it, although you may need help with medication such as antibiotics, antivirals, antifungals. However, for reasons we don’t fully understand, sometimes the immune system has an overwhelming response and starts to attack our organs and other tissues.

The infection may have started anywhere in your body, the infection may be only in one part of your body, or it may be widespread. it may have been 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
· wound from trauma or surgery
· leg ulcer or cellulitis

SEPSIS can be caused by a huge variety of different germs – some of these you might have heard of, such as streptococcus, e-coli, MRSA, C diff. Most cases of SEPSIS are caused by common bacteria which we all come into contact with every day without them making us ill. sometimes, though, the body responds abnormally to these infections, and causes SEPSIS.

Are some people a greater risk of getting SEPSIS?

We do not know why some people who have an infection develop SEPSIS and others do not, SEPSIS can affect anyone regardless of how healthy they are or how old they are People are more likely to develop severe SEPSIS after a viral illness like a cold, or a minor injury.

However, there are some groups of people who are more likely to get severe SEPSIS, such as if you:

· are very young or very old
· are diabetic
· are on long-term steroids or on drugs to treat cancer or other conditions. (chemotherapy)
· 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), for example, leukaemia
· have an infection or a complication after an operation
are pregnant or have just given birth

I have just come out of hospital after having SEPSIS how should I expect to feel?

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 skin. Your nails may also break easily.

· You may notice changes to your hair and some may begin to fall out some 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 walking, eating, even breathing can suddenly feel very difficult or frightening. You have to remember how sick you have been and try and see that you have made progress, even if it doesn’t feel like it sometimes.

· Here you will find more information on recovering from SEPSIS in information books, you can acquire printed versions of these through the trust.

Please go to our Resources page to view our 'Sepsis a Guide for Patients and Relatives' & 'Survivors Information'.

When should I think about going back to work?

Going back to work can be a really daunting prospect! Some of the problems that can occur as a result of your SEPSIS can make resuming work difficult or impossible such as fatigue, poor memory and concentration. Most employers will be happy to allow you to start back on reduced hours until gradually increasing them until you are feeling fit enough to work your usual hours, this is known as a phased return. You may have lost your confidence and feel unprepared for these added stresses. You may still have outpatient appointments for physiotherapy or to see the doctors who looked after you which will dictate how much you can work.

Options you may consider with your employer if returning to work is proving to be difficult.

· Direct your employer or occupational health department to information on recovering from SEPSIS, such as our Survivors information Book or our website.
· To reduce your hours on a temporary basis and to review this when you are feeling ready to do more.
· To permanently reduce your hours.
· To look a changing your duties to ones you feel able to perform.
· Consider new employment that can provide the solutions above.

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.

I have started to lose my hair could this be related to my SEPSIS?

Hair loss can occur post SEPSIS, this type of hair loss is usually temporary, it commonly starts several weeks after SEPSIS and lasts about 3 to 6 months. It is normal to shed approximately 30 – 150 hairs daily and hair regrows automatically so the total number of hairs remains the same. Following a major illness such as SEPSIS this an increased proportion of hair shifts from growing to shedding.
This kind of hair loss is self-correcting. It is really not influenced by any treatment that can be given. However, gentle handling of the hair, avoiding over-vigorous combing, brushing and any type of scalp massage is important.

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.

Can you get SEPSIS more than once?

SEPSIS can affect anyone at any time, but some people are at higher risk than others. There has been some research that looked at how SEPSIS survivors do over the long-term and researchers have found that over the following year at least, some survivors are more prone to contracting another infection. Of course, when there is an infection, there is a risk of SEPSIS. Most people who have SEPSIS usually seek help early on and treated promptly.

If you do have an infection, then you should keep a close eye for any signs of SEPSIS and seek help urgently if they are worried.

I am getting one infection after another has SEPSIS affected my immunity?

Some survivor’s immune system that normally helps them fight off infections is not as effective in the year following their SEPSIS.

The result of this is they find they are getting one infection after another, this could be coughs and colds, repeated water infections or a wound infection that keeps coming back. Recurring infections can be worrying when recovering from SEPSIS as many people are very anxious that they may get SEPSIS again. For most people, early medical consultation and treatment with antibiotics treat the infection and it doesn’t progress to anything worse.

It is however important for you and people close to you to be aware of this problem and not to neglect any infections you have and to make sure they know the signs of SEPSIS and seek urgent medical attention if concerned.

I am unhappy about the care I or my relative received from my doctor or the hospital, how do I go about raising concerns?

In the first instance you may want to talk raise your concerns with the medical staff informally and provide them with opportunity address your concerns and answer your questions.

You are under no obligation to make a complaint informally before you make a formal complaint. However, if you believe something has gone wrong with the healthcare provided to you or a loved one, it is almost always best to discuss your concerns with the medical staff as soon as possible, especially if your main concern is to have something urgently put right.

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

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 to you after suffering a medical accident and their website contains lots of useful information on how to make a complaint.

Citizens Advice also provide useful guidance on how to proceed with a complaint. You may consider taking legal action, we have in collaboration with carefully chosen companies compiled a list that we feel may help you decide on specific support or advice you may need at this difficult time.

I am tired all the time and no matter how much rest I get it doesn’t seem to help?

Extreme mental and physical tiredness that is not relieved by rest is known as fatigue, this is one of the most common problems experienced when recovering from SEPSIS. Some survivors only experience fatigue for a few weeks but many will experience fatigue for months and some will experience it for several years.
Fatigue can be difficult to describe. It’s not just an ordinary tiredness that you might experience after a hard day’s work or strenuous exercise. Many people post SEPSIS describe their fatigue as an overwhelming tiredness with no obvious cause. This fatigue might, for example, make you feel extremely tired after very little activity, or you may even wake up feeling as tired as you did when you went to sleep.

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

What exercises can I do that may help my recovery?

Your joints and muscles may be painful stiff and weak, it is 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. Here is a link to some home exercises.

These home exercises are ideal if you're not very active but want to improve your health, lift your mood, and remain independent. Don't worry if you haven't done much for a while. These exercises are easy, gentle, and can be done indoors. It is important to take things steadily at first gradually building up what you are doing and if anything is particularly painful, then to seek advice from your doctor or physiotherapist.

NHS Living well low impact exercise

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Find a Facebook group

There are Facebook sites that can be a useful way to connect with others that have been affected by SEPSIS. Here are some links to some below. We do not moderate these pages with the exception of the UK Sepsis Trusts own Facebook pages, so we are unable to accept any responsibility for their content.

UK Sepsis Trust

The official site of the UK Sepsis Trust, includes news and information and you can also message the trust and ask questions and request support.

Simply SEPSIS

A closed site for SEPSIS Survivors, has members all around the world.

Simply SEPSIS Loss Support

A closed site for those that have been bereaved by SEPSIS

SEPSIS Warriors

A closed site for those affected by SEPSIS

SEPSIS Support Northern Ireland

A closed site for those affected by SEPSIS

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