“Hamish became ill in March 2012 at 18 months of age. He had a temperature of 40, which was unresponsive to medication.
He was unable to move and had stopped eating and drinking. He was lethargic and floppy, and his neck was bent and almost resting on his right shoulder.
“I took him to our local surgery in Yelverton, who referred us to Derriford Hospital, where he stayed for observation. They ruled out meningitis, although they were somewhat concerned that his temperature continued to be pyretic.
“They told me to syringe small amounts of liquid into his mouth every ten minutes to prevent dehydration. After two days of this I was exhausted with lack of sleep and frantic with worry that he was not improving. Again, I visited the GP who told me he had a mild ear infection and prescribed antibiotics.
“He was unable to keep the antibiotics down, so I self-referred to the out of hours GP the next day. The out of hours GP examined him and told me he suspected it may be viral meningitis and we were sent up to the children’s ward at Derriford Hospital for further tests”
Dismissed my concerns
“On the children’s ward, he was seen by a nursing auxiliary, who immediately became very worried and raised several alerts with both the nursing and medical staff. After around two-and-a-half hours we were seen by a registrar, who dismissed my concerns.
“After a quick examination she told me that it wasn’t meningitis, although she prepared him for tests which she later chose not to do (although failed to document why she had made this decision). She asked me whether I wanted to take him home. I was adamant at this stage that he was so very ill and I wanted him to start to improve before he was discharged.
“Crucially, the doctor had failed to read the referral from the GP and also ignored the concerns and notes from the auxiliary nurse. This meant that he was not seen by the consultant.
“The next morning, Hamish was seen on the ward round. I again raised the issue of his neck stiffness and they said that they would do a lumbar puncture to ascertain whether it was meningitis. Three hours later this was performed. Shortly after Hamish went to a side room and whilst they were taking blood, it was casually mentioned that the lumbar puncture had proved that he did have meningitis and it was bacterial. The registrar then left the room without explanation. I remember screaming.
Left profoundly deaf
“Hamish was kept in isolation for 10 days and gradually became more responsive. I raised concerns that I thought he might be deaf and I was told that this, along with his mobility, would be something that would resolve on discharge. I managed to get him a hearing test the day after discharge and this showed that he was deaf, and certainly on the severe-profound end of the scale. Perversely, I was happy as I had been proved right (this was short lived).
“He went in for surgery four days later to do an ABR and MRI, showing that he was profoundly deaf bilaterally and with damage to his vestibular end organs (meaning that his balance would be permanently affected). He went for bilateral cochlear implant surgery three weeks later in Bristol.
Postcode lottery
“Initially he seemed to be doing well – the implants are fantastic and with masses of vestibular rehab (plus points of being an occupational therapist) he made huge improvements physically. We have since moved around the country trying to get the most out of the postcode lottery of provision and have had a veritable crowd of health professionals involved, ranging from the sublime to the loathsome (I’ve mentally put together a ‘Dream Team’ of my favourites).
“As time has passed however, he has not recovered in the way expected and I realise that I was presumptuous to believe that with my dedication to his rehab and my therapy background he would rise above his limitations.
“He is now 5, non-verbal, very challenging and accumulates life-limiting diagnoses every year and the world becomes a much smaller, limited and often isolating place. Aspirations at this point for some semblance of a ‘normal’ life go determinedly out of the window.
“I’ve now come to the realisation that Hamish will need lifelong support and complex planning to meet his needs. I know this sounds like I’m focussing on the negatives but this is the reality that I need to get my head around and actually helps establish some level of acceptance of this new state.
Beautiful and loving child
“On the positive side, he’s a beautiful and loving child who is extremely funny and we have found our own way of communicating together. It has also given me the opportunity to meet other parents of children with additional needs, who have given me immeasurable amounts of support and advice and who I appreciate and love more than they will ever know.
“I’ve also been lucky enough to access equipment, therapy, training and funding through several charities – notably SSAFA, Meningitis Now and the NDCS.
“The most painful and difficult aspect of this is that I feel that it was all so preventable. There are so many ‘what if’ questions. What if we’d seen a different GP? What if the registrar had actually listened to the nursing staff and read the referral documentation? What if his care had not been marked with unforgivable delays in active treatment (around 27 hours)?
“More than four nurses visited us during the days in isolation and told me to make a complaint as they felt that the medical care and delays had been so appalling. Derriford Hospital led a serious inquiry and found crucial mistakes and misses in his care. The catalogue of errors has left life-changing consequences, not only for my son but us as a family. Life is very different and with the ongoing cuts in provision and services, is becoming increasingly difficult.
Be assertive
“I would urge all parents to be mindful of the symptoms and be assertive. I can never forgive myself for not pushing, and being the ‘good patient’ when I knew my son was desperately ill. The emphasis on the rash is almost a red herring, as it appears only in a relatively small number of cases and without it, the delays so evident in Hamish’s case can occur.
“Rapid diagnosis is vital and more professionals and parents need to be aware as this terrible and cruel disease changes futures and devastates lives. I’m quite cautious that this will seem a negative story and it is certainly not all bad (I adore my crazy beautiful little terror), but in light of the ‘full recovery’ stories this may offer some balance (I know I need it sometimes). Hamish’s recovery journey from bacterial meningitis in 2012 has been so vastly different than I had hoped and worked for and we are facing an uncertain future.”
