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Parents need consistent advice about recognising meningitis, charity says

Amy Walkden with her mother Kirstie (Meningitis Research Foundation/PA)

The lives of babies and children could be saved if parents are given consistent, explicit advice about recognising meningitis and septicaemia (otherwise known as sepsis) from health professionals, a charity has suggested.

The Meningitis Research Foundation said most children with meningococcal meningitis or sepsis display only non-specific symptoms in the first four to six hours of illness but can be dead within 24 hours.

It said previous research found almost a third (30%) of young babies with bacterial meningitis receive inappropriate early treatment which delays parents seeking further help.

And around half (49%) of children who have meningococcal infection – the most common cause of bacterial meningitis – are sent home after their first visit to a GP and not admitted to hospital.

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The charity said that because the early signs of meningitis and sepsis are often similar to the symptoms of less serious illnesses, it is very difficult to spot at first.

Its latest report includes a summary of personal accounts of more than 100 parents whose children had meningitis but were sent home after their first visit to a health professional.

It highlights examples of inappropriate advice given to parents, including being told that their child’s fever was due to a change in milk formula, and that prune juice was recommended for fever and irritability.

National clinical guidelines recommend that doctors listen to parents’ concerns because they know their child best, and recommend that “safety netting” information is given to parents or carers of sick children with suspected infection before they are sent home.

The charity said this should include information about meningitis and sepsis and telling parents to return for medical help if they feel their child’s symptoms do not improve or are getting worse, but in reality this information is not always given.

Mother-of-two Kirstie Walkden, from Manchester, said her nine-month-old daughter Amy became critically ill with pneumococcal meningitis in August last year – although it was not diagnosed straightaway.

Amy Walkden survived pneumococcal meningitis last year Credit: Meningitis Research Foundation/PA

She said: “Amy had seemed a bit out of sorts for a day or two. I took her to A&E on the Sunday when her symptoms escalated; temperature, vomiting, mottled skin, fast breathing, lethargic.

“However, we were sent home with antibiotics for a suspected ear infection. I was surprised but felt reassured.

“Back at home her temperature continued to soar and by the Tuesday she was no longer eating or drinking and I couldn’t get any normal response from her.

“My instincts were screaming this was serious so I made the decision to take her back to hospital – where all hell broke loose.

“This time the hospital were amazing and within an hour they were treating her for suspected meningitis and sepsis. The diagnosis was later confirmed as pneumococcal meningitis.

“We were living a nightmare and pleading for her to keep on fighting, and on day 18 she was finally well enough to come home.

“Only time will tell what long-term impact the disease has had on her, but so far she has exceeded all expectations.

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“I shudder to think what could have happened if I’d not trusted my instincts and gone back so soon.”

The charity said there are an estimated 2,500 cases of bacterial meningitis and meningococcal disease in the UK each year.

Chief executive Vinny Smith said: “There’s a real risk that doctors can easily miss meningitis and sepsis in the early stages.

“Offering patients or parents of children safety netting information could be life-saving if a child with a serious illness is sent home.

“Parents often have a gut instinct and know when their child is seriously ill.

“When a child is ill and getting rapidly worse, parents should not be afraid to seek urgent medical help – even if they’ve already been seen by a doctor that same day.”

The report outlines that existing safety netting information is varied in the advice given and may not pick up both sepsis and meningitis.

An expert Meningococcal Working Group established in January at the request of then-Secretary of State for Health and Social Care Jeremy Hunt recommended that it should be recorded in a patient’s notes that safety netting information has been provided to patients with suspected infection if they are being sent home.

To help take this forward, the Meningitis Research Foundation is recommending a national audit of existing meningitis guidelines to ensure that safety netting information is being provided, along with future monitoring by the Care Quality Commission to ensure safety netting advice is delivered to parents.