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Parents of children with epilepsy share experiences of research involvement

PARENTS MICE Study Patient and Public Involvement (PPI) Group

The MICE Study PPI Group

Great Ormond Street Hospital for Children

Date Published: October 28, 2020

Author: James Matejka

This week, we have handed over our Research Blog to parents participating in the MICE Study Patient and Public Involvement (PPI) Group. The MICE Study is the Mental Health Intervention for Children with Epilepsy (MICE) at Great Ormond Street Hospital, led by Professor Roz Shafran and Professor Helen Cross. Earlier this year Epilepsy Research UK awarded an Endeavour Project Grant to Dr Sophie Bennett at UCL Great Ormond Street Institute of Child Health to build on the work of the MICE Study. We asked the PPI group to provide some insights into participating in research to help anyone considering getting involved in ERUK’s SHAPE EPILEPSY RESEARCH NETWORK.

Here, in their own words, they describe why being involved in research is important and some share their own perspectives and experiences of mental health and epilepsy.

We would like to thank Emma, Andrea, Jemma, Bron and Ben from The MICE PPI Group for contributing to this article, and to Amy and Tyler for supporting this blog.

The MICE Study – Background

There is a significant body of evidence demonstrating that common mental health conditions are more prevalent in children with epilepsy compared with their peers. The MICE Study was set up at Great Ormond Street Hospital to trial the effectiveness of telephone-delivered cognitive behavioural therapy for young people. Epilepsy Research UK has recently funded further research involving the MICE Study, led by Sophie Bennett, to investigate whether treating mental health problems in children with epilepsy affects certain outcomes, such as education, health and parents’ mental health.

What advice would you give to families and people with epilepsy who are considering getting involved in research?

“I would 100% recommend getting involved in research to families. I didn’t know the opportunity existed until I was approached. My experience has been very positive and has provided a unique opportunity to have input from a parent’s lived experience and to meet a wonderful group of people, both clinicians and parents who “get it”.

“Don’t hesitate. Your experience is first-hand and so valuable. Through research, we stand to improve the lives of so many epilepsy sufferers by making epilepsy a super important subject.”

“For me, PPI has been invaluable. As a participant, I genuinely feel that we are providing a valid contribution to the development of the projects and also feel that we are being “heard”. As a parent, I often feel like I am dismissed when raising concerns regarding my child’s conditions. Being part of the PPI group has in some ways made me feel more validated. From a more personal perspective, being part of the projects has helped us develop our knowledge of the conditions discussed and also, inadvertently provides a level of peer support that we didn’t even know we were missing.”

“As well as the MICE project being brilliant and us all wishing it had been around when our children were first diagnosed, this PPI group is also important because of the way that the team repeatedly tells us “this is what you told us and this is how we changed it”. The difference with good PPI is that you are getting a chance to make it better and actually make a change. If we can use our voices to show researchers that it is vital to have PPI done properly from the very beginning of any project then that means that it will work out better for us and our kids in the long run.”

How can I get involved in epilepsy research?

As part of the #ALifeInterrupted campaign Epilepsy Research UK wants to build the biggest ever community of people living with epilepsy to influence and shape research. Patient and public involvement is vital in helping Epilepsy Research UK to unlock further progress, to help build relationships that will result in greater investment, and to help gather the evidence needed to call on the government to do more. Patient and public involvement will speed up progress to stop the interruption epilepsy has on lives. Epilepsy Research UK is asking anyone who’s life has been interrupted by epilepsy to join our SHAPE EPILEPSY RESEARCH NETWORK to have their say and help shape the future of research.

Mental health and epilepsy – what I wish I’d known from the start…

We are aware that mental health professionals, clinicians and people with epilepsy will read this blog, which is why we wanted to take this opportunity to share our experiences and what we would like other people to know about mental health and epilepsy.

When we were first diagnosed, other people focused on the seizures and so we did too:

“Before my daughter started having absence seizures aged 2, I had never heard of them and I knew next to nothing about epilepsy. Within 3 months, she had been diagnosed with idiopathic generalised seizures and we left the clinic with a very basic understanding of absence seizures, a prescription for some medication we were told “would make her feel quite odd” and an appointment for 3 months time. We left that appointment thinking that we would give our little girl some (as we understood it) fairly horrible medication and once we’d got the dose right (which might take a while), she would hopefully have very few seizures – none if we were lucky – and life could more or less resume as it was. Within 2 years, we realised this couldn’t be further from the truth.”

“At 15 months old our daughter had a seizure. She had another one at 2 years old and a further one at 2 and a half.  We asked outright if she had epilepsy and were told no. We were given anti-epileptic medication, emergency rescue medication and very little information as to what was wrong with our daughter. At age 5, doctors took our daughter off her medication. 3 weeks later I called her consultant as I was concerned she was having absence seizures – he told me kids sometimes ignore their parents. 10 days later she had 16 seizures in one day each lasting between 45 seconds – 4 minutes.  We were then told she had epilepsy. And so started 3 years of constant medication changes, hospital stays, numerous visits to various consultants and eventually, brain surgery.”

“My son, now 15, was diagnosed with focal seizures in 2015 shortly after he started secondary school.  He has been through 5 or 6 medications which do not fully control his seizures.  After our first meeting with his neurologist he was undiagnosed, and we were told he was suffering from tics.  We were of course hugely relieved and, as instructed, started to reduce his medication, stopped logging “seizures” and started to call them “episodes” – trying to draw less attention to them.  After a couple of weeks, he had his first bigger seizure and was immediately admitted for further tests.  He was put on and remains on, the surgical pathway.  He has recently returned from his second round of invasive monitoring (in-depth electrodes), whilst his medical team try to find the focal point of his seizures and establish if he is a candidate for surgery.”

“I take lots of tablets every day and you’d think that would sort it out. It doesn’t, my epilepsy isn’t controlled and I still have seizures.”

It took some time for us to work out for ourselves that there’s more to epilepsy:

“In addition to the seizures, it was obvious to us that there was ‘something else’ even though we weren’t sure what. Despite mentioning this to our consultant and epilepsy nurse, it felt like it was brushed aside somewhat – “she’s young”, “the medication has side effects’, “she’s doing ok developmentally”. It wasn’t until the advent of social media and meeting other parents whose children also had an ASD diagnosis that it all made sense. Our daughter didn’t get diagnosed with ASD until she was 6, ADHD followed aged 8. However, until then her epilepsy had not been considered a special educational need as it was assumed that the AEDs did their job so there was no problem. In reality, she was already struggling at school and her mental health was quickly deteriorating. Now aged 13, anxiety has prevented her from attending school for 2 years and she has an array of specialists trying to support her.”

“During these years we queried Autism and were told that her behaviour and emotional difficulties were down to her medication usage. We were told we didn’t know our child as we’d never really had her without medication clouding her. We knew this to be wrong. But we also knew that despite the reasons for her behavioural and emotional difficulties, we needed help and so did she. Help that we didn’t know how to access, and which was never offered. She received an ASD and ADHD diagnosis just before her 9th birthday.”

“Before the summer term ended, my son’s behaviour deteriorated and became increasingly defiant.  This resulted in him being taken off a school trip and numerous other sanctions (detentions/time in the reflection room).  At this point, I reached out to his epilepsy nurses at both GOSH and our local hospital to ask for support and he was referred to CAMHS.  We had our first appointment in early September.  This coincided with returning to school, where the behaviour problems continued.  We had attempted to work with the school but before we were given an opportunity to meet with the head my son was excluded pending permanent exclusion.”

“Immediately after a seizure I often feel very tired and just have to sleep. I can get really bad headaches and don’t feel like talking. I really wish I didn’t have epilepsy and sometimes think why me?  but I do have it and so I get on with life and manage it the best I can.”

We wish we had been told that there was a risk of other problems from the start, so we could have got the right help sooner:

“Had we known about the well-evidenced likelihood of a co-occurring neurodevelopmental condition at the very start, we would have been able to better support and advocate for her as soon as we saw the signs and I really think life would have been quite different.”

“We feel that if we had been better informed of the relationship between epilepsy and other neurological conditions, and had someone taken note of our concerns then we, and she, would have been better supported.  Not only better supported throughout her medical journey, which for her was utterly traumatic, but also her schooling which has been fragmented due to her seizures, and ineffective in lots of areas because the school didn’t know they were trying to educate a child with Autism and ADHD.”

“Because my son copes so well with his condition and the surgeries he has had, it is not always apparent what is going on in his head.  I feel that if the right support for young people with epilepsy was in place from the beginning, we might not be where we are now.”

If your life has been interrupted by epilepsy and you would like to shape the future of research – join the SHAPE EPILEPSY RESEARCH NETWORK and have your say here.

The MICE Study at Great Ormond Street Hospital has been guided by advice provided by the active Patient and Public Involvement (PPI) group associated with the hospital.

This work was supported by the NIHR Programme Grant for Applied Research (Grant Reference Number RP-PG-0616-20007). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.