Sick teen facing crisis in her care

A TEENAGER with a rare condition that causes her to throw up 30 times a day says medics are running out of options to administer the daily mineral infusions that help to keep her alive.

Caitlin White has spent eight to nine hours a day as an outpatient at Perth Royal Infirmary for the past three-and-a-half years having potassium and other minerals pumped into her bloodstream because she cannot get the nutrients she needs from eating.

However, the 19-year-old suffered a bout of sepsis in November that forced doctors to remove the central venous catheter (CVC) that had been surgically implanted in her chest.

CVC lines are left in for long periods of time, but the risk of another potentially deadly infection means medics are relying instead on thinner cannula tubes, which are left in for 48 hours at most.

In recent weeks, however, they have been struggling to insert them as years of failed attempts at artificial feeding have ravaged the teenager’s veins.

Ms White said: “We’re at a bit of a standstill and I’m in a very dangerous position because there were two days last week when we weren’t able to get access and they had to leave it until the next day.

“If they hadn’t been able to get access we’d be in a very dangerous situation because without replacing these levels it could go very wrong, very quickly.”

The teenager, who is 5ft 5ins but weighs less than six stone, has been told that her only option will be an inpatient admission to Ninewells Hospital in Dundee, where she would be monitored round the clock.

However, she is reluctant to return to the Ninewells unit where she says the relationship between herself and the gastroenterology team was left “irretrievably broken down” after a previous lengthy stay which she says was mired in false accusations from staff that she was “making up” her symptoms.

She has been seen by a number of private consultants and NHS gastroenterologists outside of Tayside who have described her case as one of the worst they have seen.

Ms White, who turns 20 in January, survives on soup, gels and powders but struggles to absorb sufficient calories and suffers excruciating abdominal pain as a result of gastroparesis, a condition that means her stomach is partially paralysed.

It has led her to develop cyclical vomiting syndrome, meaning she is often sick more than 30 times a day.

The Herald previously reported how Scotland’s chief medical officer, Dr Catherine Calderwood, intervened in Ms White’s case in April and insisted the teenager be referred for a consultation to an expert outside of NHS Tayside due to her “exceptional circumstances”.

The case was reviewed by Dr Ruth Mckee, a leading gastro expert and colorectal surgeon in NHS Greater Glasgow. However, Dr Mckee said she could only offer a second opinion but was unable to take Ms White on as a patient.

She advised the teenager that artificial feeding could kill her due to the high risk of infection, but that without it she was at risk of organ failure.

The teenager said she does not want to return to Ninewells after her previous experience, but would consider treatment on a different ward or through an out-of-area referral.

NHS Tayside say this is not an option, with a spokeswoman saying: “The multidisciplinary expertise required for complex nutritional and gastroenterology issues is delivered on the specialist gastroenterology ward at Ninewells Hospital and does not exist elsewhere in NHS Tayside.”