A DEVASTATED mother has told how doctors repeatedly failed to acknowledge her son was critically ill just days before he died, instead saying his symptoms were caused by a virus.
Rachael Wells spent two days trying to convince health workers that her seven-month-old son Joshua needed urgent medical attention, making two trips to the casualty department at Alnwick Infirmary and several calls to Northern Doctors Urgent Care, which handles out-of-hours medical cover across Northumberland.
But each time, the 26-year-old data manager was told that he was suffering from a virus – until he had a seizure.
Joshua was eventually taken to Wansbeck General Hospital and then transferred, first to North Tyneside and then the Royal Victoria Infirmary, where an aggressive strain of meningitis was detected. He died two days later on Thursday, March 17.
Rachael and her partner, Darren Prime, have now lodged a formal complaint over the handling of their son’s case, which is being investigated by the NHS.
They are being supported by local MP Sir Alan Beith and his constituency team, as well as national charity Meningitis UK.
Rachael, from Alnwick, said: “Josh first showed signs of being ill on the Saturday morning, when he was sick and had a high temperature. I gave him Calpol and Nurofen throughout the day to control his temperature and initially thought it was due to a new tooth.
“On Sunday, he still wasn’t himself. We took him along to Alnwick casualty department in the morning and I remember sitting in the waiting room looking at the other patients waiting to be seen and wondering why we were not being classed as a priority.
“We waited over an hour to see a doctor, who informed us that Josh had an ear infection and upper respiratory viral infection.
“We were sent home without antibiotics and told to continue giving him Calpol and Nurofen. She informed us that if Josh still had a high temperature in the morning, he would not be able to go to nursery, which he had started a week earlier.”
Forty-year-old Darren had to leave for work in Norwich on the Sunday evening, but at 9.30pm the situation changed dramatically.
“Josh woke up screaming,” she said. “His temperature had shot up to 41.6C and the medicines were no longer having a significant effect in keeping his temperature down. I phoned the Northern Doctors Urgent Care line and was told a doctor would be with me within the hour.
“An hour later, there was no doctor or phone call. I phoned them back to be told the doctor was in Newcastle and couldn’t get to me and because I lived in Alnwick, I could take Josh along to the casualty department. I was shocked and complained – why was I not called back straight away, as I could have been to the casualty department over an hour earlier?
“I purposely waited for the doctor to come to the house as I didn’t want to take Josh out in the cold because his temperature was so high. I knew that a sudden change in body temperature could cause seizures.”
Rachael wrapped up Josh, de-iced her car and drove to casualty, where she was seen by a different doctor but again told the same as earlier in the day and sent home just before midnight.
Rachael again phoned Northern Doctors Urgent Care on Monday evening, but was told his symptoms ‘sounded viral’ and she would have to wait until the doctor’s surgery opened at 8am. But during the early hours of Tuesday, his condition worsened.
“I phoned Northern Doctors Urgent Care and asked for a doctor to come out urgently,” said Rachael. “He said he had looked at the record and could see from the notes it was viral. Again, I was told to wait until 8am when the surgery opened.
“I phoned them back when Josh’s breathing became rapid. I was told over the phone not to breathe so heavily, as they could not hear what I was saying. I explained that it wasn’t me, it was my baby breathing, and that was why I needed a doctor urgently.
“While I was on the phone, Josh started having a seizure. I screamed at the doctor to get an ambulance, but he kept questioning me how I knew it was a seizure and what were the signs. I was cut off the line, so I had to phone an ambulance myself.
“Josh was rushed to Wansbeck General Hospital where a team of doctors and nurses were waiting. They controlled the seizure and I was told Josh would need to be transferred to North Tyneside.
“I demanded he go straight to the RVI as I knew this hospital is renowned worldwide for its specialism in paediatric care.
“I was told I did not have a choice in the matter and because they were a trust hospital we had to go there. Once at North Tyneside it was confirmed that Josh had meningitis. It was not just viral as I had been brainwashed into thinking.
“That’s where our lives fell apart. On Tuesday evening at North Tyneside, Josh’s right lung collapsed and he needed to go on a ventilator. The flying doctors’ team came from the paediatric intensive care unit at the RVI in Newcastle and transported him back there.
“He was stable, but nothing prepared us for seeing our baby attached to all the machines.
“At this point we were holding onto hope that Josh would pull through this nightmare, just hoping and praying for a miracle. We then got the devastating news that he had bacterial pneumococcal meningitis, the most deadly form of the disease.
“The hours went into days with no sleep and no food, as we didn’t want to leave his side.
“Our hopes started to fade hour-by-hour as Josh didn’t respond to any of the treatment.”
Joshua died after two independent tests indicated there was no activity in his brain. The loss of their first child has had an enormous impact on Rachael and Darren.
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“If we go on to have another child, I will probably end up practically living at the RVI should my child become ill,” said Rachael. “I urge all families reading this story to go with their instincts when your child is not well, as they are a lot stronger than any qualification I have come across.
“Just because a patient doesn’t have the typical symptoms, it doesn’t mean they’re not suffering from the life-threatening meningitis infection. Not everyone gets all the symptoms – Josh did not have the rash and that is why observation and vigilance is the key.
“We are in hell and I wouldn’t want any other family going through what we are going through now.
“Parents know their children and don’t ask for doctors unless they are concerned. I feel the health workers played Russian roulette with my child’s life and the bullet landed on Josh’s head.
“I will never use the Northern Doctors Urgent Care line again. The care we had was appalling. I phoned three times and I was left on my own with a very sick baby at night, asking for a doctor’s help – but not one doctor came to my assistance.”
North Northumberland MP Sir Alan Beith says a full investigation must now take place.
“This is a tragedy in which everyone feels for the family involved but it is made worse by the fact that there seems to have been very serious failures in health care and I am helping the family in raising these with the NHS,” he said.
“Whether or not these apparent failings made a crucial difference, they should not have happened and a thorough investigation is required.”
He added: “From the beginning of the out-of-hours system which replaced the local GP service at night, I have believed that a doctor needs to be available throughout the out-of-hours period in our area, not expected to travel from Newcastle to deal with what may be an urgent case.”
A spokeswoman for NHS North of Tyne, which is conducting the investigation, said: “This is a very sad case and our thoughts are with the family at this difficult time. As soon as we became aware of their concerns we made contact and arranged to see them so that the issues they were raising could be properly investigated through the NHS complaints procedure.
“We have already met Joshua’s parents and have taken an extensive account of their concerns. We will remain in contact with them throughout the investigation.
“As the body responsible for commissioning healthcare we will lead the investigation and seek responses to the concerns raised from the organisations involved in the care and treatment of Joshua. Once we have the findings of the investigation these will be shared with the family along with any resulting recommendations.
“We have reassured the family and Sir Alan Beith that this will be a robust investigation, carried out as quickly as possible.”
A spokeswoman for Northern Doctors Urgent Care said: “Our thoughts are with Joshua’s family through this difficult time. Cases like this, particularly involving a young child, are tragic and we pass on our deepest sympathy to the family.
“We are unable to comment on the specific details of this case at present. However, although extremely rare, in our experience sudden deaths of children are often clinically complex and require a full and proper investigation to establish the facts.
“The care received by an individual from any healthcare provider, such as Northern Doctors Urgent Care, will be investigated fully and it would be inappropriate for anyone to comment on the advice and care given until a full investigation has taken place.
“All our clinicians make contemperaneous clinical records of any examination and treatment and all our telephone calls are recorded and these will be crucial to any investigation.”
Joshua was buried at St Michael’s Church in Alnwick following his funeral on March 24.
Rachael added: “We made a very hard decision and decided to donate an organ to a one-year-old child. Our prayers are with their family.
“We also want to thank everyone who offered their condolences and support following our loss. We’re extremely grateful for the comfort and kindness we have received. We are still collecting donations, if desired, for the Paediatric Intensive Care Unit at the Royal Victoria Infirmary.”