The Disease Nobody Knows About Until it’s Too Late

If you know much about sepsis, chances are the condition has affected your family.

Sepsis has a high mortality and kills 37,000 people a year in the UK, about 1,000 of them kids. So this week I’m parking the levity and using my blog to sum up what you need to know about sepsis. Photo by Jean Scheijen FreeImages.com/Jean ScheijenUnderstand what it is.

Sepsis is when the body responds to severe infection in such a way that it attacks its own organs and tissues. Without treatment, this quickly leads to organ failure and death.

Most people have heard of blood poisoning (septicaemia) which is much the same thing. But doctors now prefer the term sepsis because there isn’t always blood poisoning in this condition.  

Sepsis isn’t exactly a household name – yet. Personally I think ‘sepsis’ sounds weaker than either septicaemia or blood poisoning, but we’re stuck with the term that scientists agree on.

Know the signs.

The symptoms depend on age, but the main point is that there isn’t any one specific sign like, say a swollen jaw with mumps. A child with sepsis can have a high fever, or an abnormally low one. The younger the child, the vaguer the symptoms.

Here are some signs to look out for in children (from the UK Sepsis Trust’s Paediatric Pocket Guide):

symptoms of sepsis in children

And here are some signs to watch out for in adults (from the UK Sepsis Trust’s excellent Symptom Checker card):

symptoms of sepsis in adults

If I could highlight just two consistent points about sepsis, they would be these:

You or your youngster will be more unwell than expected.

Things get rapidly worse, especially in children.

Understand who gets it.

Anyone can develop sepsis from a bacterial infection (or sometimes a virus or fungus). But some are more at risk, like the very young, very old, pregnant women, diabetics, and people on long-term steroids.

The initial infection can be a serious one like meningitis, or seemingly trivial, like a horse-fly bite.

Surgery can be linked with sepsis, especially emergency operations on those in poor health, or with peritonitis or bladder infections.

scalpel

Know what to do.

Sepsis is a medical emergency and needs urgent hospital care. Don’t waste a single moment.

Sepsis isn’t one disease, but rather a syndrome that cuts across almost every medical speciality. The first doctor you see could be a paediatrician, a gynaecologist, an orthopaedic surgeon, or your GP, and sepsis may not feature at the top of their list. That’s why it’s so important for you to mention it. When you see the doctor or nurse, make sure you say, “I’m worried about sepsis.”

Thanks for bearing with me.

Litmann type stethoscope

Here’s a selection of further reading if you’re interested.

The UK Sepsis Trust is a charity founded to save lives and improve outcomes for survivors of sepsis by instigating political change, educating healthcare professionals, raising public awareness and providing support for those affected. For their general factsheet on sepsis, click here

Sepsis Awareness Month: Rory’s Story. One mother’s personal account.

Three and a Half Heartbeats by Amanda Prowse. A novel of love, loss, and hope about a family devastated when their child dies of sepsis. And proceeds go to UK Sepsis Trust.

Plunkett A, Tong J. Sepsis in Children.  BMJ 2015;350:h3017. A detailed medical article from the British Medical Journal.

How Could a Doctor Think of Going on Strike?

Best job in the world, thinks Geoff, at least when he’s not inspecting verrucas.

While Geoff is a fictional GP, he’s uncannily similar to a lot of real family doctors.

Right now he’s unwrapping a cheese sandwich and feeling grateful he’s not a hospital doctor facing life or death decisions.

Because any minute now BMA ballots will be plopping through their doors, asking whether they’d take industrial action.

Litmann type stethoscope

He’s not fond of strikes and instinct tells him doctors shouldn’t have them. If striking makes a perceptible impact, people get hurt. If it makes no impact, the strikers look stupid. Lose-lose, in Geoff’s book.

But what else can junior hospital doctors do?

By anyone’s clock, 7am to 10pm six days a week can’t be a standard working day. Geoff’s not sure how it squares with the European Working Time Directive which requires 11 hours rest a day. About 10 years ago the EWTD began to include junior hospital doctors. He recalls that opt-outs have to be voluntary. Is Jeremy Hunt aware of this?

It’s not about the money, say junior doctors. They’re not “trainee doctors”, by the way, despite the way the press describes them. They’re fully qualified members of the medical profession, ready, willing and (most of all) able, to resuscitate the dying or resect metres of gangrenous bowel as appropriate. 

Jeremy Hunt doesn’t look a bad guy.

Health Secretary Jeremy Hunt

He’s just wrong, thinks Geoff. That mortality paper in the BMJ has a lot to answer for. It showed that being admitted to hospital at weekends was linked with a significantly increased risk of in-hospital death. Lots more of them would be acutely ill, so that makes sense.

The same paper also showed that being in hospital at the weekend was associated with a reduced risk of death!

So where the fuck did people get the idea that having more doctors on duty would prevent those excess deaths? Geoff hurls his sandwich wrapper into the bin.

Being self-interested, as everyone is at heart, Geoff worries that the proposed new contract for junior hospital doctors will affect general practice too. It would imposes a drop of 40% in GP trainee salaries. Those ARE trainees, by the way. They’re doctors training to be GPs, and there aren’t enough of them as it is.

More importantly, the new contract jeopardizes patient safety because it removes the safeguards which protect doctors from working dangerously long hours.

scalpel

No wonder many people believe the proposed contract puts the future of the NHS at risk.

Does all that make striking a good game plan? Doctors last took action in 1975, well before his time as he’s only been qualified 15 years.  

Recently a whopping 95% who took part in a Guardian poll answered yes to the question: Should junior doctors strike over the government’s proposed contract?  He thinks there were 28,000 or so people polled, nearly as many people as there are junior hospital doctors. But obviously he can’t find the article now, what with the winter care plan, new advice about FGM, and an avalanche of other vital information.

It’s the baby clinic this afternoon in Geoff’s practice. Britain has one of the best immunisation programmes in the world, he likes to think. Geoff heads into the waiting room, beams at the parents, and wonders how long the NHS has left to live.

tombstone

***

You may also like:

GMC advice for doctors in England considering industrial action.

The doctors’ 1975 industrial action.

 

10 Ingredients for a Perfect Funeral

I don’t like funerals.  They mean the loss of family, friends, or patients, none of which I welcome.  But sometimes a send-off works out really well.  Here’s how we did it.

1. Great weather helps.  Rain is all very well for cemeteries in TV thrillers, but in real life you don’t want frizzy hair, steamed-up glasses, or trench foot while standing at the graveside.  Result # 1: the weather turned out to be amazingly sunny for the end of winter.

2. Black is drearily Victorian, and charcoal is frankly a cop-out. When in black, I look so bad I may as well be dead already, so I was only too pleased to comply with my mother’s wishes: wear bright colours.

3. A good turn-out.  Funerals are frankly dismal when it’s just five people rattling around a crematorium.  I’m so pleased I went through her entire address book.

address book

4. The major coup?  Getting a good spot in the cemetery.  Not just near the parking and the tap, but a prime plot right next to Granny’s grave!  I was bursting to share the news with my mother, who was sure to be as excited as me. Unfortunately it was a little late for that.

5. A smidgeon of ceremony.  In this case, two bearded priests with what looked like saucepans on their heads, plus a bit of incense, a lot of chanting, and the sign of the cross made from right to left.  It was all Greek to me. Still, that’s what you get in a Greek Orthodox church.icon

6. An uplifting venue.  Outside, it looked a nuclear bunker.  Inside, the walls were covered in icons.

7. A personal touch, in this case The Grandmother Tree, a moving poem written and recited by one of her grandsons.

8. A hint of altruism.  What’s the point of a mountain of blooms or the word MUM spelled out in white chrysanths?  Whether it’s in a newspaper announcement or an email to friends, it’s getting more common to ask for charitable donations in lieu of flowers.

9. Peace.  Memorable punch-ups sometimes break out at weddings, but funerals should be more decorous.  I’m especially grateful to my husband and ex-husband who hadn’t met until the day itself, and were both charm personified.

10. Light refreshments at home afterwards, surrounded by all the things that illustrated my mother’s life: the books she had written, photos of her grandsons, and above all her exuberant paintings of cats and dogs, hanging in haphazard fashion on the walls of the flat where nothing matched.  She had meant to rehang some paintings and replace others, but no lifetime, however long, is enough to finish everything.

cats-rue-des-chats (1)

Rue des Chats

A funeral shouldn’t be an occasion of pain and regret.   It should reflect the person’s life.  I feel fortunate that my mother’s death came at the end of nearly 90 years lived well, and creatively.  How much harder it is for those who lose someone suddenly, prematurely, or violently.

More Certain Than Taxes, and More Painful

In a few days I’ll be at a Cambridge University event, speaking to students who look forward to careers in the media.  But today I’m looking back at a serious topic.  My piece last month in The Sun newspaper went a bit like this…

Life is complicated, but dying is even more so.

As a doctor I’ve seen many patients whose lives are utter misery.  They’ve reached a stage where nothing can relieve their suffering and make their days bearable.   Some of them beg for death.  But assisting a suicide is against the law in England and carries a sentence of up to 14 years.

If it were the beloved family pet, the answer would be clear and compassionate.

It’s heart-breaking to have a relative who longs to die, and I really feel for the families, especially as my own mother is now suffering horribly. 

My mum’s spine is deformed and broken from severe osteoporosis.  She howls in pain, and in anticipation of pain before even being touched.  She’s incapable of doing anything now.  Every single thing the devoted team of nurses do for her hurts acutely. 

Sometimes she lies in bed yelling that she’s in agony. Or else she shouts over and over “Please help me, please help me.” Mum and me crop

No longer the person she was, she weighs 35kg and stares with blank eyes.  Everything she has been through in the past two years, including a major op that she nearly didn’t survive, has left its mark.  The pain is literally causing her mind to go, but she is still aware of how bad things are.  I sit by her hospital bed and hold her hand, and she sometimes tells me she wants to die.

Increasing the painkillers makes her more confused.  Some of the drugs make her paranoid.  I’m still hoping there’s an answer because it’s so awful to watch her suffer.

Don’t get me wrong.  I was never immune to the suffering of patients in situations like this, but when it’s one of your own you can appreciate the back-story and see the whole perspective of their lives.

Medicine has a lot to answer for.  Many people wouldn’t be alive had it not been for doctors.  On the other hand, medicine isn’t a perfect science and never will be.   I’ve been a doctor long enough to know at first hand that medicine is good at prolonging life, but not so good at sustaining its quality.   

When quality of life is appalling, or treatment too awful to bear, then the balance of pros and cons may suggest that treatment doesn’t benefit the patient.  In making that decision to withhold treatment, the relatives and patient’s wishes are vital.  If the patient can’t take part in the discussion, his previously stated wishes are taken into account.

Withholding treatment is totally different from deliberately hastening death, whether or not it’s with the patient’s consent.    

But there is what’s called the doctrine of double effect.  This makes a distinction between acting with the intention to kill, and performing an act where death is an unintended effect.

For instance large doses of pain-killers can shorten life.  But doctors give them only with the intention of relieving pain. The doctrine of double effect says that’s morally right, even though the primary effect (pain relief) comes with the risk of a harmful side-effect.  Sometimes that harm can even be foreseen, but according to the doctrine it is still OK, as it achieves the main benefit, which is relieving pain.

However the double effect isn’t often the get-out clause it appears to be.  Nowadays there is a huge range of pain-relieving drugs, and dosage changes tend to be tiny, so they rarely shorten life.

Medicine has come so far now that we need an urgent way forward on that most basic event, death.  Not all doctors are agreed on the right course of action.  If assisted dying is introduced in any form, we’d need strict safeguards against abuse, greed, negligence, incompetence, and probably a few other things as well.

Some doctors are vehemently opposed.  Personally I fear that legalising assisted suicide could change the doctor-patient relationship forever.  On the other hand, there’s also the hope that it would help medics honour Hippocrates’ order: “To cure sometimes, to relieve often, to comfort always.”

Since then, my mother has died, ending our suffering, though it continues for other families.  

 

The Day I Never Met Nelson Mandela

I want to brag about meeting Madiba.  After all, wasn’t I there in the photos, just behind the Spice Girls? Didn’t we do one of his little impromptu jigs?  And did we not shake hands that day in Brixton?  As I recall, I even helped Mandela hone some of his best quotes, like these.

No one is born hating another person because of the colour of his skin, or his background, or his religion. People must learn to hate, and if they can learn to hate, they can be taught to love, for love comes more naturally to the human heart than its opposite.

 If you talk to a man in a language he understands, that goes to his head.  If you talk to him in his language, that goes to his heart.

Education is the most powerful weapon which you can use to change the world.”

Alas, the sad truth is that, unlike the rest of the world, I have no personal reminiscences of Mandela to share with you, broadcast, or tweet.

The closest I ever got was holding a placard.   It was decades ago, when thousands of students filled the streets and chanted ‘Free Nelson Mandela’.  Some were committed anti-apartheid campaigners, like the group who held a four-year vigil in Trafalgar Square, but others weren’t.  Looking back, a few of my fellow students probably had little idea of who Mandela was.  Still, it was a lot more fun than going to lectures.

I doubt many people imagined then quite how world-changing Mandela might one day become.   So is he the new Messiah, as some suggest? Mandela in Parliament Square

Until history answers that one, I offer several points of contrast:

There are very few buildings and streets named after Jesus.

Jesus never got married or wrote an autobiography.

Mandela wore amazing shirts.

While Mandela and Jesus were both keen on love, forgiveness, and food for all, there is no record of Mandela ever walking on water.  If he had, he might not have had to wait for the boat from Robben Island.

Rest in peace, Nelson Mandela.

A person dies twice:  once when their heart stops, and again when they are forgotten.   As long as we never forget this wonderful man and all he stood for, he will always be with us.

Mandela plaque WestminsterRelated articles