Concern At Brain Tumor Misdiagnosis

The following is an email from Tara's parents sent to her (ex) GP on the 4th October 2009. The hope is that the practice learn from their mistakes, and improve as a service, so that other families can be spared some pain:

"Dear Practice Manager,

The fact that our 2 year-old daughter Tara Huckle is alive today is in no way thanks to the North Laine Medical Centre, who missed many opportunities to spare her some pain. It is due to the concerns of an Optician at the Sussex Eye Hospital, who correctly showed concern at the symptoms our daughter was displaying. They quickly got Tara seen by a Paediatrician, who noted fluid on Tara's Optical Disc, indicating Intracranial Pressure. The Paediatrician immediately admitted Tara to the care of the Royal Alexandra Children's Hospital for overnight observation on the 5th August 2009, ready for an MRI scan the next day. Unfortunately the scan revealed that Tara was suffering from a tennis ball sized brain tumour on her Cerebellum. This was preventing Cerebrospinal fluid (CSF) draining properly, causing a build up of pressure and putting her life in danger.

She was rushed gravely ill to Kings College Hospital in London, and in the surgeon's words, Tara “arrived on death's door." They took her straight down to theatre to have the fluid drained (putting her out of immediate danger), and then she had to undergo a 12 hour operation to try and remove the tumour. Thankfully, the operation was a success, and the tumour has since proven to be a Grade 1 Pilocytic Astrocytoma, which has an extremely good prognosis. Unfortunately Tara has developed Hydrocephalus, and has been fitted with a shunt to help drain excess CSF, but that device appears to be working very well and she looks tremendously healthy. We'll learn what else lies in store for Tara over the coming months, after more tests have been conducted (she may need another operation to remove any remnants of tumour), but given what we've been through we are very pleased to have a healthy Tara back amongst the family fold, and for her outlook to be extremely bright.

And in one's darkest hours there is always a shining light - the care we received once Tara was correctly diagnosed was quite an inspiration! I am in awe of the love the hospital staff put into their work - it was a joy to behold and sustained us through our despair.

However, this is in direct contrast to our emotions regarding the service we received from the North Laine Medical Centre. Mum took Tara into the practice many times in the weeks leading up to her being rushed to Kings. Amongst her symptoms were a squint, her losing the ability to walk, vomiting and headaches. She even vomited in the practice in front of one of your doctors - we have since learnt that these are classic symptoms of Neurological disorder and should have raised alarm bells that Tara was in fact seriously ill. Yet the doctors who saw Tara at the practice failed to register those symptoms as serious. One time we were even urged to give her Tamiflu, and to not come back to the practice for a fortnight! And that was without any flu symptoms, apart from a headache. I must exempt from this catalogue of failure a young Locum doctor Tara saw the very last time she was brought in to the practice, who seemed to register the gravity of the situation and put Tara on the 2 week emergency list for cancer appointments. However, by that time it would have been too late - if we'd have waited for that appointment we'd have lost Tara.

Had we lost our daughter, as we very nearly did, this letter would have quite liberally used words like 'incompetence', 'insensitivity' and 'negligence', and we believe we would have been quite justified in doing so. Thankfully, however, we were spared a fatal outcome, so instead we feel we need to write in the hope that another family can be spared some of the stress that we have had to endure. One cannot imagine the pain Tara had to cope with in the weeks leading up to her being rushed to King's critically ill. And we have been told that if Tara was not correctly diagnosed in time, she would have simply "fallen asleep", probably some time around her being rushed to King's. The thought of Tara not waking up next to her dear elder sister whom she sleeps with is almost too much for us to bare. We are so thankful we have not had to cope with that.  

Given our experience, we are not entrusting our family's ongoing health to the North Laine Medical Centre - in fact we feel we would be failing our daughters if we were to do so. On top of everything, mum feels that her worries that Tara was very seriously ill were brushed aside every time she visited; she mentioned to several doctors at your practice her fear something might be wrong with Tara's brain - sometimes a mother's intuition is worth noting! We have been told by very experienced staff at Kings that children of Tara's age DO NOT suddenly develop squints, stop walking, vomit and have headaches without something having gone very seriously amiss with the brain. Please, if you ever see a child exhibit a combination of those symptoms in the future, then get them scanned – you may just save a life. In fact, we were also told that if a child of a year or more suddenly develops a squint, then they should also be sent for a scan, as this could be symptomatic of something more seriously amiss. Whatever the truth, our opinion now is that it's much better to be safe than sorry, and that children should be scanned if there's any doubt to their well-being. Else we're failing them. Tara is a case in point.

We accept that you have a difficult task as you see many patients with a variety of illnesses. But that doesn't excuse failure. Thankfully most people you see will have trivial complaints that time will heal. But mother time can also play the villain in some cases; such as our daughter's. And it's exactly those cases that a family needs to be able to rely on your practice to do its job competently. Unfortunately that wasn't the case for Tara and ultimately, you failed her very badly. You were given many opportunities to spare her some of her pain, but it took someone outside of your practice to pick up on the seriousness of Tara's condition and get her diagnosed correctly. If we'd have left it to you, we'd have lost her.

Our hope, however, is that as a practice you will learn from Tara's case and take steps to ensure that another family does not have to go through quite as much pain as we have."

*Note. The family have since changed GP's to one recommended by Tara's health visitor - Dr Nalletamby at the St. Peter's Medical Centre.