Educating Neve
Where curiosity and dying meet
Today’s writing is based on a talk that I gave in October 2023, to mark the Hats on for Children’s Palliative Care Campaign . The focus of that talk was on the intersection of education and palliative care. I have adapted the talk here, for a wider audience.
For those new to Neve and her life, I will start with some context. Neve was and is my daughter, the third in a quartet of blue eyed sisters. In the summer of 2020, at the age of seven, she was diagnosed with brain cancer. Neve died in April 2023, after living longer than anybody expected. These years of cancer, illness and dying were extremely unpredictable; Neve suffered a lot.
Education played a fundamental role in Neve’s life, both formal and non. I imagine this is the case for many other children, irrespective of their medical and palliative care needs. Alongside family, friends and professionals, I spent hours pondering, brainstorming and dreaming up possible schemes, to meet her needs and her wishes. As I write this and you read my words, I urge you to focus on how important education was to Neve. I hope that one of Neve’s many legacies can be that the next child you meet, who stands, sits or lies at the crossroads of palliative care and education, is supported to learn and discover, in the way that all children deserve.
Early Years, 2013 - 2019
Neve had a very standard UK route into education, without any medical concerns at all. A friend and I, with similar aged children, did a childcare swap for the first couple of years of their lives. Subsequently, Neve and her friend attended a playgroup and then preschool. Finally, they joined reception at our local primary school, eventually moving up into Years One and Two. Arthur would remain a beloved part of Neve’s world, for the rest of her life.
Neve loved her teachers and the class TAs, often with an abundance of attachment and fervent energy. She enjoyed making new friends and running around with these playmates at break time on the playground. Neve was learning to read and she especially loved Maths.
Year Two, Spring 2020
The covid pandemic lockdown began when Neve was in Year Two; it brought about enormous change. As she thrived on structure and routine, I devised timetables and tried to keep her engaged with school. She adored Mr F’s virtual lockdown musical assemblies, particularly his renditions of Black Socks. However, as the weeks and months wore on, it was increasingly clear that Neve was struggling academically and cognitively. Her behaviour was challenging and there was no doubt that her mental health was deteriorating. I felt helpless and was very grateful for our weekly phone calls with her teacher.
In June 2020, when schools widened their intake, Neve joined the key worker group and returned to primary school. We had high hopes that this would have a positive impact, socially, emotionally and physically. Alas, this return only lasted a couple of weeks, with her deteriorating throughout. In mid July 2020, she was admitted to hospital for further investigation. Over this hot summer weekend, Neve was diagnosed with an aggressive brain tumour. Emergency brain surgery swiftly followed her diagnosis.
By the time she made it home, nearly two weeks later, school was finishing for the summer. We didn’t know it at the time, but March 2020, before the first covid lockdown, was the last time that Neve attended school without any additional needs or complexities.
Year Three, Autumn 2020
By September 2020, Neve was part way through radiotherapy and chemotherapy but keen to start Year Three with her class. Thankfully, her radiotherapy took place first thing in the morning and was very local to us, so she was able to spend most of the day in school. Neve had the support of a brilliant TA, Mr H, who was on a gap year and working at the school.
However, by the end of this month, Neve was really struggling. Friendships were hard and she was exhausted. This wasn’t surprising, given the possible side effects from radiotherapy. Neve dropped down to attending school part time, engaging with what she could. Well supported by her TA and the school, she enjoyed her time there. On days in hospital, we occasionally saw a hospital school teacher, however, as her own school was so engaged, she didn’t need much else.
Midway through November, a planned MRI brought the devastating news that her treatment wasn’t working and that she would eventually die from her cancer. However, in the midst of all of this heartbreak, school remained a constant and a source of enjoyment. There didn’t seem any reason to stop her attending, when she was up for it. She loved learning and thrived on the routine and the normality of school.
This all changed near the end of November 2020, when Neve had her first seizure. She went from happily playing to being intubated on a ventilator in Intensive Care. Almost as shocking as the seizure was Neve’s request, as she began to regain consciousness. Despite clear difficulty in even talking or staying awake, there was no ambiguity about her wishes. She wanted Bug Club, immediately! No time was wasted and a friend was dispatched to our house, to fetch Neve’s school laptop.
Bug Club is an online reading platform, used by our primary school. Neve adored the App, reading and doing related quizzes within it. Her love affair with Bug Club was to continue for the rest of her life.
Though Neve returned home within a few days, a return to school was no longer as simple as before. Neve’s nursing team needed to deliver necessary seizure training, which eventually allowed Neve to have a couple of highly planned and structured visits. Sadly however, it was becoming apparent that a loud and busy school was not working for her. She was finding the normal chaos of a primary school, on top of the complex social interactions and behaviours, to be extremely stressful and overwhelming. However, this didn’t diminish her curiosity and her love of learning. It was the environment that was challenging.
Year Three, Early 2021
As we moved into the new year and back into lockdown, Mr H began visiting Neve at home. Several times a week, he would appear with activities, books and snacks (usually toffee popcorn) to meet with her outside. Bundled up against the cold, Neve cherished these visits. In addition, she relished visits from her current and past class teachers, who could be relied upon to arrive with chocolate, for endless games of Poo Bingo and Uno.
The care that school demonstrated was powerful. There was no doubt that, to them, Neve’s education was just as much of a priority as it had always been, despite us all knowing that she would not grow up. Her education was for the moment, rather than an investment in her future.
Around this time, we realised how upsetting it was for Neve to see pictures and imagine her friends being at school together, learning and playing, without her. The reminders of all that she was missing were just too painful.
What did work well was when Neve chose a topic and her class drew her pictures, based on that topic. Neve and Mr H would go through the drawings, talking about them and about the children in her class. However, the focus was always on Neve, not on what she was missing in school. Subsequently, Mr H and Neve would gently fold each individual drawing into a paper airplane and send it flying down the garden.
Year Four, Autumn/Winter 2021
September saw Neve nominally enter Year Four. Over the summer, her TA had left for university and her teachers from previous years had all, coincidentally, left the area. Initially school continued to support Neve, with the school counsellor and/or the deputy head visiting several times a week. She quickly built strong relationships with these members of staff.
Sadly, as the year progressed, the number of visits decreased. The general level of need within the primary school was complex and overwhelming. As is the case in so many schools, they just didn’t have the staff or the resources to meet all of this need. Sadly, Neve’s visits were often usurped by urgent safeguarding situations or other more immediate needs. Combined with her unpredictable but vital naps, it was becoming hard for all of us to keep this going.
What Neve really needed was a dedicated, ring fenced member of staff. Even better if they could be flexible and visit when Neve was awake. I often pondered whether we should just apply for an EHCP. When Neve was originally given her terminal diagnosis, her prognosis had been 1-12 months. She had already outlived this. I had previous experience of applying for an EHCP so I knew the intensity of the process and the time scale. On many levels, it felt like a crazy idea, to even think about applying for an EHCP for a child who might die at any moment. On the other hand, I knew that if she was still alive in another year, I would wonder why we hadn’t just applied. The best time to have applied for an EHCP would have been the autumn of 2020. Was the next best time now, in early 2022?
When I thought about applying for an EHCP, it was specifically with the idea of an EOTAS plan, a way of accessing funding to support Neve’s education, outside of a school setting. A combination of increasing mobility challenges and real insurmountable access issues meant that leaving the house was virtually impossible. In Neve’s final year, the only way in and out was with the support of an ambulance crew. Sometimes two crews were needed, when she was really unwell. Even if leaving the house regularly had been feasible, what school could possibly meet her needs? Her cognitive abilities were deteriorating unpredictably. She would have needed a constantly flexible school that could morph between a specialist setting and a mainstream school, depending on the day. In the absence of this, bringing education to Neve, at home, made the most sense.
Neve was lucky enough to have the NHS community nursing team’s play specialist coming to see her weekly. These regular visits became a lifeline, a much anticipated moment in Neve’s week. The play specialist had almost unheard of flexibility, so her visits were timed for when Neve woke from her nap. This ensured that Neve was rested and at her best, for their time together.
I could see that this setup worked beautifully. Surely we should be able to recreate it on other days of the week? An hour a day was plenty, given how much Neve was sleeping and how unwell she was.
At times, I would try to organise friends to come and spend time with Neve, bringing activities or things to show her.
Somebody come from a local museum with items for Neve to explore.
A friend, a hedgehog expert, brought his collection of stuffed and taxidermic hedgehogs.
A neighbour came and did bespoke chalk drawings on the patio tiles, under Neve’s instructions.
We were lucky enough to have Nick Cope share a brand new song with us, by video, before it was released. It's fair to say that Neve’s nurse and I were just as, if not more, excited than Neve.
As wonderful as these ad hoc moments of discovery and joy were, they were also complicated to organise. Life was already complex and challenging; I was struggling to put in place what I could see that Neve needed. Caring and managing the care of a child with complex needs was already overwhelming. Even just staying on top of sourcing and administering her medications was a full-time job. There was a limit to how much I could do to improve her education situation, even with the support of our community.
It was clear to me that our primary school had their heart in the right place and was dedicated to Neve. However, try as they might, they just didn’t have the resources to meet Neve’s increasingly complex and unpredictable needs. In addition, her needs were constantly changing, as she deteriorated and rallied. How could we realistically set goals, with a moving prognosis? Neve specific funding was needed. With the right funding and the right people in place, surely we could expand what we could offer Neve. Why shouldn't she have her educational needs met?
Neve’s sadness was ever present; she wanted to be in school, learning with her friends. She was missing out on her childhood. Throughout this time of complexity and uncertainty, Bug Club remained a consistent positive. Neve spent many happy hours on the reading platform, often supported by her nurses and carers. On days when she struggled to see, they would read aloud to her, both fiction and non-fiction. Together, they would answer the quiz questions, with everybody learning a multitude of random facts.
As time went on, Neve’s cognitive abilities began to decrease more rapidly. Reading was becoming harder and more frustrating. One of the major strengths of Bug Club was how adjustable the reading levels were. A quick message to school and they would immediately reduce the reading ability level on her account. This preserved Neve’s ability to continue reading and comprehending successfully. Bug Club kept the world of reading accessible to a dying child. A combination of beloved adults sitting alongside her and the constantly adjustable reading levels within the platform meant that she was still enjoying Bug Club in her final weeks, if not days.
Year Five, Autumn 2022
In October of 2022, the stars aligned. Neve’s primary school openly acknowledged that they could not meet Neve’s needs, despite them dearly wishing to do so. As Neve was unable to attend school due to her medical needs, a new door opened. As long as Neve could formally remain on the register at her primary school, the local Hospital School could step in and support her, at home. This began another magical time in Neve’s education. Three scheduled visits a week, from her own dedicated outreach teacher. The sense of relief was acute. There was now no need to ponder EHCPs or EOTAS. Funding Neve’s education no longer needed to be on my radar. Likewise with finding good staff and managing her education.
Neve and her teacher connected and built a warm relationship. Visits included art, messy play, cooking, stories and so much more. It was incredible how much they could cram into their hour together. Unsurprisingly, Neve could be counted on to invariably ask for just one more book. Regular nursing shifts, when they occurred, meant that we could all settle into a bit of a predictable routine and pattern. Thursdays were always for baking, which, naturally, was a real hit. Neve consumed a lot of unbaked chocolate batter, always with a glint in her eyes. Even more exciting, on my part at least, was that the teacher brought all the supplies and dishes that were needed, as well as laminated recipes that Neve could follow. At the end of the session, she took it all away, including the dirty dishes. As I was already so overwhelmed with trying to keep life going, this tiny action had an enormous impact.
By this point, Neve was a regular visitor to our hospice, usually when her symptoms would become overwhelming and inpatient support was needed. She would go for a few days; these visits to her second home and second family brought her much joy and relief. Our hospice had a dedicated teacher on site, who was another Hospital school teacher. Neve built a strong relationship with her, always looking forward to visiting the hospice and seeing this teacher. Obviously, they cooked and baked together. Having both teachers connected via the Hospital School was invaluable. I smile, when I imagine them messaging each other, discussing the feisty child who loved baking, particularly when chocolate was involved.
A yearning to learn
It sometimes felt strange to be so focused on learning, in a child who we knew was going to die soon. It was easy to fall into the trap of thinking of learning as an investment for the future. Neve was a reminder that learning is much more than this. She might not have had a long future ahead of her, but she was a bright, curious child. She yearned to learn. I remember her excitement when a nurse would offer to set her maths problems and they would spend the day working them out together.
Over the years of her illness, Neve had always really enjoyed activity books. Maths books, crossword puzzles, dot to dots, spelling, reading and more. She loved how structured they were. Particularly in the early months of her illness, she spent many hours working through them. Near the end of her life, a friend sent her some simple wipe clean activity books. For a perfectionist child who was struggling with her cognition and fine motor skills, these were ideal. They met the ever present need to learn and to engage her mind.
Given the multifaceted nature of education, it was clear that there would not be one single way to meet her educational needs. We were working hard to cobble an education together, in our own makeshift way. I could see how lonely Neve was, despite the incredible support from her primary school and then the Hospital School. She was still a child, yet she was spending her days in the company of adults. Whilst these were adored adults, compassionate and warm, it just wasn't enough.
Neve so much wanted the world of children, the world of play. Alongside the parents of Neve’s friends, we worked hard to ensure that she could maintain her friendships. It was inevitable that they would change, as her friends matured and as Neve deteriorated. Yet these dear friends continued to visit Neve until the very end, bringing her pictures, playing games with her and enjoying snacks together. They were compassionate, sensitive to Neve’s needs and difficulties and well supported by their own parents. Their continued presence in Neve’s life was a priceless gift, at a time of real pain and sorrow.
It feels disingenuous to ignore the impact of Neve’s symptoms on her education. There were days when her pain was just too overwhelming, her anguish too acute or other symptoms too intense for her to focus on education, even in the broadest sense. As time went on and she deteriorated more and more, she was often too tired or even fast asleep, to engage. Even in the magical days of excellent education support, early in her illness and again near the end of her life, sometimes cancer was just too much.
Looking back, I see a dedicated cohort of people who worked hard to cobble together an education for Neve. By necessity, these plans were constantly changing. In many ways, we had to keep moving backwards, in order to keep supporting Neve’s curiosity to move forwards. However, this monumental effort did allow Neve to access some of the education that mattered so much to her.
On an individual level, with enough compassionate and dedicated people, working very hard and very creatively, it was possible to ensure that Neve could still be educated, until she died. But stepping back and looking on a broader level, it is distressing to realise that there was no obvious system in place to hold a situation like Neve’s. I think about the fast track health assessment that Neve had, using the Fast Track Pathway Tool which opened the door to Social Care and Continuing Care support. This was based on the fact that she was rapidly deteriorating and may have been entering a terminal phase. I think about the Special Rules for end of life, which fast track a terminally ill child’s ability to access Disability Living Allowance. And I wonder why Education doesn't have a similar fast track pathway, when a child is terminally ill. Is educating a dying child not a priority? What about Neve’s right to an education?
Educating a child with palliative care needs is challenging, particularly when their needs are so complex and unpredictable. Yet this does not change the fact that a bright and curious child can be a dying child. And that a dying child can be a bright and curious child.
I urge you to take Neve’s story forward and for it to be a reminder, next time you meet a child like Neve. They may be dying but this doesn't also mean that they aren't curious about the world around them. Be creative, as you devise ways to meet their educational needs, whatever they may be.
That is a particularly beautiful picture. You have managed to catch the sense of connection perfectly. I don't know why but I always love pictures from the back.
I love the paintings! And your writing is just as beautiful. Thank you