A mum whose daughter has been in hospital for months has said watching her deteriorate is "awful" and "traumatic".
Vicky Archer was first taken into hospital in November and, after being in and out of hospital for a few weeks, she was admitted into Southmead Hospital on January 24, where she has been since. The 20-year-old was first diagnosed with autoimmune encephalitis back in 2016, with the condition at that point being triggered by a mosquito bite while on holiday in Menorca.
Vicky's mum Alison claimed her daughter has had six confirmed relapses since then, but that Southmead Hospital won't start treating the condition this time until they are totally confident of the diagnosis. Southmead Hospital has said that patients' conditions are often very complex and that giving patients the "very best treatment and care" is their top priority.
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The mum-of-three said she first took Vicky into Southmead Hospital back in November as she was having constant headaches, but that she was discharged the following day. She was then again in hospital between December 15 and January 6, before being re-admitted on January 24.
The mum said that, at one point in mid January, it was like her daughter had dementia as she had speech problems, couldn't remember her phone number or what day of the week it was. Alison, from Yate in South Gloucestershire, said: "It was really out of character behaviour, we picked up on it because we know our daughter very well.
"Before she was admitted, I noticed she was becoming impatient and that she was having cognitive fatigue, that she was not as good as before with her college homework. She had been doing very well with her college before.
"She was still getting the headaches and was finding it hard to retain information."
Doctors think this latest relapse has been caused by the cold sore virus, said the mum, having had lots of cold sores recently. Encephalitis is an inflammation of the brain which, according to the Encephalitis Society, is caused by either an infection invading the brain or through the immune system attacking the brain in error.
Alison claimed that they were initially told this was down to her mental health, rather than a neurological problem, and that Vicky's consultant at the Children's Hospital ended up contacting Southmead Hospital to confirm she has had encephalitis before.
"I knew it was neurological as we have seen all the signs before," she said. "The hospital are not doing anything at the moment.
"They are waiting for tests to be done, even though she has had six years of tests. These tests just keep getting delayed.
"They say they won't treat because they want the results to prove it is encephalitis. But she has had this before and this is her seventh relapse since 2016.
"They are not treating her and it has been very upsetting to see her like that, and being left like that. I understand they want to get the tests, but we have seen this so many times with the same presentation.
"Prompt treatment gives the best outcome. It is treated by suppressing the immune system, but they have delayed the treatment so much that she ended up in intensive care."
Vicky ended up in an induced coma for a week, being in intensive care for 11 days at the beginning of February, the mum said, and her condition initially improved, but she has gone dramatically downhill since.
Alison said that Vicky's condition is getting worse due to the brain swelling up, adding that she is confused and struggling to communicate. The mum said her daughter had a really bad rash earlier this month, being worse than the one she had back in 2016 (pictured below), and that she was so swollen that she could not even lift her eyelids.
She said that Vicky has lost quite a lot of hair already, having got a bald patch now, and that in 2017 she ended up losing all her hair due to late treatment.
Doctors are now trying to get some spinal fluid to be able to show Vicky is fighting a brain infection, Alison continued, but this test keeps being pushed back. However, the mum said that in any case it could be up to ten days until they have the result.
"At the moment they are trying to get some more spinal fluid from her and they are also looking at getting another MRI scan to see if there is any brain damage," she said. "They are not actually doing anything as they won't treat her until they have the results.
"In the meantime, she is not getting the immunotherapy treatment which has worked every time before. She had an acquired brain injury after her 2016 admission which meant she could not read for any length of time, had really bad headaches and her hair fell out.
"I do not want that to happen again. I just want for them to get on with it and treat her. It is quite traumatic for us as a family and not just for her, to watch her deteriorate is awful.
"We just want Southmead Hospital to give her the immunotherapy treatment so she can get better again and come home. If you treat early, the prognosis is a lot better.
"It is a life-threatening condition and I can not understand why they are taking so long. I do not think they understand the implications of encephalitis and it feels as if they have not heard about it.
"I do not feel she is being treated as a priority."
Hospital's response
Professor Steve Hams, Chief Nursing Officer at North Bristol NHS Trust, said: “We’re so sorry to hear this family’s concerns and are working closely with them at this very difficult time.
“Patients’ conditions are often very complex, and while we can’t comment on individual cases, we can say that giving patients the very best treatment and care is our top priority.”
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