Day 4 Gaia Pope Sutherland’s Inquest

This morning was the fourth day of Gaia’s inquest and the morning was taken up with one witness, Professor Matthew Walker, a Professor of Neurology at the National Hospital for Neurology and Neurosurgery in London and at UCL.

Most of the questioning came from counsel to the inquest, Sarah Clarke, and the Coroner.

Professor Walker only met Gaia on one occasion, on 15 March 2017, having received a referral from her GP Dr Watson of Swanage Medical Practice (who retired earlier this year).  

Professor Walker explained the background as he understood it from the referral letter, as Gaia and her family were not happy with the treatment that she was receiving for her epilepsy and wanted a second option. He explained how:

“Gaia’s seizures proved resistant to treatment… treatments had been changed but she still had terrible seizures… in that circumstance many people are unhappy about the treatment they’re receiving”.

He described the initial appointment as an opportunity to assess the:

“nature and severity of her epilepsy and try to put a plan in place for alternative, or appropriate, treatments for her epilepsy”.

Professor Walker confirmed at the time he saw Gaia she did have epilepsy and he considered that it was very serious with her experiencing:

“5 to 10 seizures a day, more worryingly in recent months convulsions… she had a crescendo of seizures since the end of the previous year, since October 2016”.

He accepted that at that stage Gaia’s epilepsy care had passed onto him, but commented that it was “at that stage unclear whether her whole care had been transferred” over to him, and he received no written confirmation from the local treating team in Dorset. This was somewhat different because the referral came from Gaia and her GP, as opposed to from her Dorset consultant Dr Page.

Professor Walker confirmed that he was aware that Gaia had had recent involvement with Adolescent Mental Health Services, and that in the months prior to seeing him had been sectioned under the Mental Health Act. This information was provided by Gaia and her mother. When questioned by counsel for the inquest he confirmed that he wasn’t aware that the episode that resulted in Gaia being sectioned had been preceded by a tonic clonic seizure two days before.

He explained that would have been relevant information to know because it was possible that Gaia was suffering from a postictal psychosis, which occur a number of hours or a day or so after a tonic clonic seizure that can last a couple of weeks. If he’d known then steps could have been taken to prevent clusters of seizures, or to treat after the seizures had occurred with benzodiazepines to try and prevent the psychosis.

Asked what his impression was after meeting Gaia on 15 March 2017 he said:

“she had very severe seizures, resistant to medication, had some problems with behavioural or psychiatric problems recently and that she also I think had some cognitive problems… what I saw was someone with very bad epilepsy, someone who’s coping, it may sounds strange to say, remarkably well given the severity of epilepsy she had”.

His plan was to try and determine whether was way forward with surgery to try get Gaia seizure free, so he explained that he put in place the assessments normally required to make a decision on that.

The jury were told that the initial GP’s referral letter was sent on 14 November 2016, Gaia then had to wait until 15 March 2017 to see Professor Walker. Following that appointment Gaia was admitted as a day patient to have an MRI scan the following month, she had a PET scan in June 2017 and was then admitted from 9 to 17 July for videotelemetry EEG testing.

On questioning from the Coroner it became clear that Professor Walker made his first referral for assessment by neuropsychology and neuropsychiatry, following his March 2017 appointment but this did not happen. He then requested an assessment again in September 2017. He wasn’t able to explain why there had been no progress on those for six months after his initial referral and at the time of Gaia’s disappearance and death in November 2017 she had still not been invited for either assessment. Consequently all the information required to make a decision regarding surgery was not available, and no multi-disciplinary team meeting was ever held.

The Coroner seemed surprised at how little contact there was between Professor Walker and Gaia

“C: this is someone with complex epilepsy, seen on 15 March and then you didn’t speak to them for 8 months”

and later

“C: so after she was discharged on 17 July there was a period of 4 months with no contact with Gaia at all?”

It was of course 4 months later when Gaia went missing and died.

Professor Walker said that if Gaia was admitted to hospital under the Mental Health Act, or treated by a mental health team he’d expect to be contacted, and if she were assessed but not sectioned he’d like to be contacted but that never occurs. He particularly hoped if she were admitted after a seizure that someone would contact him so that he could review Gaia’s care.

When asked by the coroner if the fact he wasn’t contacted was a missed opportunity to review her epilepsy care he responded emphatically that it was.

The court heard that a social worker from Dorset County Council will tell the jury in due course that she attempted to contact Professor Walker’s team on 5 October 2017 but they never received an email. If it had been sent to the right email address he indicated that would have been enough to trigger contact with Gaia, and if he’d been aware of a deterioration in her health he’d have reviewed her health and treatment.

The Coroner asked Professor Walker whether better communication would lead to better care and therefore prevent future deaths:

“Absolutely, that’s clear. There’s a general lack of communication throughout the NHS, there are specific problems at the moment… now we’re going onto electronic records, records systems aren’t compatible, getting scans now has become possible but many other investigations difficult to get transferred.

There’s a significant problem and it is to the detriment of those people being treated in the NHS that these communications do not occur. In the past as well, General Practice would act as a significant hub, but they don’t have the time or resources to mange that.

So I do feel there’s a lack of communication, yes”.

The Coroner expressed her concerns about a lack of communication between epilepsy services and mental health care, especially given what Professor Walker had said earlier that they closely linked. She asked if it would be of benefit if she were to write on a national level to discuss communications between those teams and Professor Walker responded:

“Not to put too fine a point on it, people with epilepsy are four times more likely to commit suicide… they have a high rate of depression and anxiety… not just as a result of having bad epilepsy, but also the circuitry that results in, or abnormal circuitry that results in seizures, also predisposes to psychiatric disease… so very close relationship and I think if one thing could be done to improve the lives of people with epilepsy, and protect lives of people with epilepsy, better communication between mental health services and neurological care would be helpful”.

Paul Spencer, for both Dorset NHS Trusts, tried to suggest to Professor Walker that there should have been better communication within his own team, but he disagreed:

“No. Almost every patient we admit has some psychiatric disorder or some psychiatric condition; certainly by the time we’re getting to surgery, I’d suggest two thirds of people, of people I see in my clinic I’d say about 40% have psychiatric condition.

Those patients will see our neuropsychiatrist, who will liaise with local psychiatrist services… if receiving relevant treatment, won’t take further, if issues impinge on epilepsy will liaise with me or another consultant to manage better. If felt medication is interacting with psychiatric condition that will also be communicated. That is process by which that occurs, that’s how it happens”.

Sophy Miles, for Gaia’s maternal family, asked Professor Walker a number of questions about what his investigations had found [that Gaia’s epilepsy was most likely to originate from her left temporal lobe] and the impact of that [which was likely to lead to cognitive difficulties and problems with memory].

He described how Gaia’s epilepsy was likely to have an impact on her day to day life:

“Absolutely, seizures themselves have enormous impact on people’s lives, especially because can never predict when they will occur… they come out of the blue… can’t predict how severe they will be.

For many people impact of psychiatric aspects related to epilepsy, and cognitive aspects, those are things there all the time rather than occurring intermittently”.

Professor Walker expressed no concern that Dr Page had referred Gaia to the local tertiary centre in Southampton, but also felt it was likely she would have been referred to him by them. He also noted that Dr Page had referred other patients directly to him.

Professor Walker also highlighted the impact that the PTSD Gaia was suffering following sexual assault, was likely to have had on her epilepsy, as there is a direct relationship between chronic stress and a detrimental impact on physical health including increased frequency of seizures.

“PTSD, or any stress, chronic stress, can make seizures more frequent”.

Ms Miles continued by asking Professor Walker about his availability to give advice:

“SM: you’ve talked about communication difficulties and resources; but if one of your patients is admitted to hospital in a crisis, there’s nothing to stop one of the doctors or nurses picking up a phone or emailing you, saying they’ve admitted your patient, what’s your advice?

MW: that happens frequently, on a weekly, or two weekly basis

SM: is that helpful?

MW: very helpful

SM: what might you be able to add?

MW: it varies, often give advice on medication, or how interacts with other medications… if seizures are worse, advise what can be tried to help”.

At this stage the Coroner interjected to explain that when Gaia was admitted on 21 and 22 October that was a weekend, and asked whether Professor Walker could be contacted 24/7 or only in office hours.

“MW: I get contacted at all times, was contacted this weekend by other doctors and by patients

C: is that within your Trust? Would someone outside your trust have your telephone number?

MW: they were all outside my trust. By email can contact, usually via email or via telephone via secretaries, answerphone over weekend and message would be communicated to me during week. If email to my secretary communicated during weekend, if direct email to me I will receive during the weekend.

C: so it depends, is your email address available publicly?

MW: yes, it is on the UCL website, and we’re all on NHS email, can get access, there are a number of Matthew Walkers but you can search by trust”.

Professor Walker confirmed that he could advise on medication, about level of risk to a person of their epilepsy and its severity. He also confirmed that there are registrars on call and consultants on call for the hospital, and for epilepsy. These are available via the hospital switchboard who can connect callers to consultant on call for epilepsy at the weekend or on bank holidays.

Ms Miles also asked Professor Walker given that Gaia had contact with her local mental health services, and her local epilepsy services, would he expect there to be links between those services prior to her being referred to him:

“MW: I would hope there were links, one of the big problems is those links and communications aren’t adequate… I can’t comment on local services, or indeed whether a failure occurred, but I agree generally the links between mental health services and medical care are often inadequate”.

After Professor Walker’s evidence, we heard this afternoon from Dr Dinesh Kannan, a consultant psychiatrist, but given his evidence is part heard I’ll not report it now.

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