Introduction

With more than 25 years working in the education sector, Cath Kitchen has been involved in multiple initiatives focused on inclusion, medical needs, and alternative provision. She recently contributed to and edited the book Including Learners with Medical Needs in School, a collaborative guide offering practical strategies for educators supporting children with complex health conditions.

In 2018, after presenting evidence at a parliamentary committee meeting on alternative provision, Cath was introduced to  No Isolation and later that year, her trust secured funding through the Alternative Provision Innovation Fund and purchased and deployed 90 AV1s across eight local authorities. Although the project ended early due to Covid, Cath and her team continued using AV1s locally, with a fleet of 25 units supporting many children each year.

In the following interview, Cath shares her reflections on the challenges that schools and local authorities face when supporting children with medical needs, and offers practical, compassionate ideas for how those gaps can be addressed. From the use of an AV1 in a school play to help a child feel part of the moment, to the bigger challenge of holding space for medically complex learners in overstretched systems, Cath reminds us that inclusion is about keeping the child in mind every day.

Interview

You’ve worked extensively with young people with medical needs across multiple settings. What do you think remains one of the most difficult challenges when it comes to ensuring these learners feel truly included and supported in education?

I think trying to include all children and young people with their wide ranging health and SEND needs is a real challenge in schools, with shrinking budgets and unhelpful external pressures from accountability tables, from Ofsted and from the demands of the curriculum. Children with medical needs are included in that group.

The additional challenge for schools in including learners with medical needs is the lack of collaboration and involvement of healthcare services. Often schools are left to work with parents and learners to devise appropriate plans which include any medical interventions. There has been a systematic creep of medical responsibilities into schools with a lack of adequate clinical training and support from NHS colleagues. With budget pressures, this additional staffing and training can be a challenge to prioritise, as is recruiting staff willing to undertake these tasks. Information sharing and data protection around medical information can present additional challenges.

The schools need to be aware that some medical conditions can fluctuate, and the impact of pain, side effects of medication and managing energy levels can affect attendance patterns and overall attendance rates. Within statutory frameworks, schools need to be flexible in their approach to attendance, deadlines, etc, which can be a challenge, depending on the  local authority and trust policies.

Some illnesses are ‘invisible’ and a lack of understanding or even skepticism from staff and learners’ peers can be difficult to manage. If illnesses are not visible, there is less sympathy or willingness to include that flexibility. School staff are not medical experts, and managing the expectations of the whole school community can be a challenge.

For the learner with medical conditions, frequent absences, fatigue, and side effects can directly impact academic attainment and this, in turn, affects the school’s overall data and performance. The significant weight of accountability and school progress data sits heavily and providing flexible learning options, such as use of AV1, can be difficult both to manage and the cost difficult to justify to senior leaders.

Learners with medical conditions are at risk of becoming socially isolated, and as well as being physically unwell, are at risk of becoming mentally unwell. It is challenging for schools to ‘keep the child in mind’ within the busy and often chaotic school environment and external pressures.

Based on your experience, what responsibilities do you believe schools and local authorities most often fall short on, and how can they begin to address those gaps?

It is a real challenge for both LAs and schools to ensure they fulfil their responsibilities under the different legislation and regulations. The key areas that they often fall short on are:

  • Nationally prescribed guidance on the provision of medical care in schools: There's a perceived lack of nationally prescribed safeguards and standards to protect both staff and pupils in the provision of medical care in schools (Children and Families Act 2014). This has recently been highlighted in a sad case of a learner with a severe allergy losing their life, and Catherine McKinnell (Minister for Children) has pledged to review this guidance, which will be helpful.
  • Funding and resources: LAs and schools often lack the necessary funding and resources to implement robust support systems, including recruiting additional appropriately qualified staff, providing specialised training, or investing in adaptive technologies. LAs need to have a named officer for learners with medical needs, and this person needs to ensure that they have a statutory policy in place, are aware of their responsibilities for children who are unwell under Section 19 of the Children’s Act, and who will champion the inclusion of learners with medical needs in the authorities' schools. Although a challenge, ensuring that applications for additional funding to support learners with medical conditions in schools should be considered in an equitable way with other learners with SEND needs.‍
  • Use of the Individual Healthcare Plan: While IHPs are a crucial tool, their development involving all stakeholders is often not implemented and used consistently. Parents need to be empowered to ask schools to put one in place and healthcare professionals need training in the purpose of the IHP and their role in compiling them.

Can you walk us through what the psychological impact of attending school with a medical condition can look like and how schools can respond in compassionate, effective ways?

Attending school with a medical condition is not just about managing physical symptoms; it's about navigating a complex interplay of emotions, social dynamics, and academic pressures which increase as the pupil gets older. In fact, for me, this is more important than the academic side because it is all about wellbeing and recovery and returning to your ‘normal’ life. The psychological impacts may include:

  • Anxiety and fear: of flare ups/emergencies, academic anxiety in case their medical condition affects participation or performance, possibly the triggering effect of the school environment, particularly if the child has had a previous incident at school.
  • Social isolation and feeling "different": this can be due to missing out on school based activities and friendships as a result of the  frequency of appointments or impact of illness: Frequent absences due to appointments or illness can lead to missing out on social events, classroom activities, and the development of friendships.
  • Stigma and misunderstanding: where peers may not understand their condition so make insensitive comments, which can then lead on to bullying. This is particularly significant for those who suffer from "invisible illnesses."
  • Difficulty forming connections and articulating their feelings: where children might struggle to connect with peers if they can't participate in physical or out of school activities or have limited energy for socialising. This leaves them feeling like they "don't belong” or matter.
  • Body image issues: where certain conditions or treatments can affect their physical appearance, leading to self-consciousness, body image concerns and fear of being teased or bullied.
  • Increased dependency: where they may need adult assistance for medication, toileting, or other daily needs, this can make them feel less independent than their peers. This can lead to frustrations and feelings of powerlessness with the limits of their illness or their inability to control symptoms and treatments of their medical condition.
  • Low self-esteem and confidence: as a consequence of academic setbacks, negative thoughts about themselves and comparing themselves to their peers. Children may feel ashamed or humiliated or feel inadequate.
  • Anger, frustration, and resentment: about having their life disrupted, resentful of the impact of their condition and the limitations it imposes.‍
  • Depression and sadness: linked to ongoing physical and emotional challenges, the experienced social difficulties can make life feel tough leading to low mood and sadness.
  • Fatigue and concentration issues: common side effects of any illness are side effects of medication, disrupted sleep, leading to chronic fatigue. This in turn makes it harder to concentrate, to pay attention in lessons and complete any academic work in a timely manner. This just compounds the other difficulties.

Schools can mitigate for these psychological impacts through:

  • Creating and fostering an inclusive, supportive environment.
  • Providing individualised and flexible support through the use of Individual Healthcare Plans (IHPs) which are developed and rigorously implemented in close collaboration with parents, healthcare professionals, and the child.
  • Flexible attendance procedures and academic adjustments allowing options for part-time timetables, AV1 use, other online or remote lessons, recorded sessions, extended deadlines, and modified assignments to make reasonable adjustments to accommodate energy levels and varying abilities. Flexibility also in arranging reintegration plans after periods of absence.
  • Differentiated instruction by adapting teaching methods and resources to allow for the impacts of the condition including fatigue, pain, or cognitive impacts.
  • Strong partnerships with parents through maintaining regular, open, and empathetic communication. Acknowledge that they are the experts on their child's condition and well-being. Discuss with the family how much information can be shared with teachers and peers, respecting the child's privacy while ensuring necessary support.
  • Establish clear channels for communication with healthcare providers involved in the child’s care to ensure consistent, up-to-date medical information and advice is provided.
  • Actively involve the child in discussions about what they need and what they would prefer to help them manage the school environment, empowering them to advocate for themselves and feel a sense of control over their learning environment.
  • Provide ongoing training for all staff (teachers, teaching assistants, support staff, administrative staff) on the potential impact of various medical conditions, both physical and psychological, and suggested appropriate support strategies. This helps combat misunderstanding and fear.
  • Age-appropriate education for peers to help demystify medical conditions and their impact, promote empathy, and reduce stigma and bullying. This can be done through facilitated discussions, stories, or activities.
  • Actively encourage and create opportunities for children with medical conditions to participate in social activities, clubs, and sports, with necessary adaptations.
  • Ensure access to school counsellors, educational psychologists, or other mental health professionals who understand the unique challenges faced by children with chronic illnesses.
  • Integrate mental health and well-being strategies into the curriculum for all children, teaching coping skills, emotional literacy, and resilience.
  • Create physically and emotionally safe spaces where children feel comfortable expressing their feelings, worries, and frustrations without fear of judgment.
  • Foster a school culture where positive respectful relationships between children, and between children and staff, are prioritised. Caring and respectful adults are crucial.
  • Ensure the school environment is physically accessible and that necessary resources (e.g., quiet rest areas, accessible toilets, medical rooms) are available without making a big fuss.
  • Implement clear, safe, and easily accessible procedures for medication storage and administration, with trained staff, and have clear emergency protocols in place that all staff are familiar with.

‍You’ve been using AV1 in your work for several years. Could you share a particular story or case that taught you something new, or that highlighted AV1’s role in building connection and continuity for a pupil?

There have been many cases that I recall because, to be honest, all the AV1 users teach us how important it is to remain connected to your peers and home school environment.

The one that has stuck with me most is one of our first users called Sam. Sam had cancer and was very unwell, sadly eventually losing his life. What I remember most is the pure joy that he experienced being part of his class every day, despite being in palliative care, and how pleased his classmates were that they could still engage with him through the AV1. I bumped into a parent from the class a few years later, and she told me that the class still talked about Sam, and about how glad they were that they had remained in contact with him right up to the end. It also really helped the children navigate the complicated process of grief and bereavement. So many positive ripples.

I am going to sneak in another one too. Another one of our first AV1 users was a child with a very complex chronic illness which meant he had to have lots of procedures before he could get into school. His one desire was to be part of the school nativity which he had never managed before, missing all of the rehearsals etc. The joy when he got his wish and participated through his AV1 which was dressed up as a shepherd. Never underestimate the small things that are part of the whole educational experience - it is worth sweating the small stuff.

How do you think AV1 can help young people with medical needs thrive? Not just academically, but also socially and emotionally?

When a child becomes unwell, they worry about their recovery and getting behind in their schoolwork, but we see time and time again that the social and emotional side to being part of a school community is such an important part of a child’s recovery. The story of the name of the company, No Isolation, came from the creator of AV1. Karen Dolva, who was struck by her friend’s comment when she sadly lost her daughter to cancer. “The cancer was awful, but what was far worse was the social isolation she felt. She would have really liked to still have friends, and it was just too difficult to keep in touch”, and so AV1 was ‘born’.

The positive physiological benefits of being with peers, of feeling ‘normal’, of the implied expectations that they will recover and return to school are all an important part of the recovery journey. There is a chapter in the book by Dr Helen Griffiths, a consultant clinical psychologist who explains it much better than I can!

What would you say to an educator or senior leader who is unsure about whether AV1 or similar tools are “worth the effort”?

What would you want if this was your child? What have you got to lose? What is the worst thing that can happen? In fact, using AV1 is actually less effort than having to set and mark work that gets sent home. You will see in the book a chapter on using AV1 where there are views from both a pupil and a teacher, which are really powerful. The pupil reflects how helpful it was to hear the teacher’s explanation of the work, enabling him to complete it independently. The teacher reflected that she was able to assess the pupil’s understanding through formative assessment.

As educators, we have a responsibility to include every child, make them feel like they belong in our schools and, most importantly, that they are remembered and that they matter. Why not?

Where do you see the role of technology and assistive tools like AV1 evolving in the future of inclusive education?

The role of technology and assistive tools like AV1 is set to become increasingly pivotal in truly inclusive education, where technology is seen not as a crutch but a bridge to connect children with their schools, their classes and the key to enabling them to fulfil their potential. How wonderful to be in a world where learning follows the child and not the other way round!

Remote learning will become the norm rather than the exception. AV1 is paving the way for real time classroom presence, normalising opportunities for hybrid learning so more children with physical, mental, or geographical barriers can access education. AV1 started off by being used just by children with physical illnesses but has now expanded to being used by children with anxiety, those who are neurodiverse, those who have been excluded - and many others!

As AV1 use becomes more common, we will see a reduction in stigma associated with any additional educational support needs, supporting a more empathetic and inclusive school culture.

AV1 and other technological and assistive tools will become part of educational strategies and budgets and will seamlessly integrate with other school systems and processes.

They will play a key role in the education going forward, there is no choice. We are seeing increasing numbers of children too anxious to attend school, because the curriculum is inappropriate, the pressures to perform and progress are overwhelming, and the environments are too big and noisy. For those children, using technology to access education is a sensible solution to being able to personalise educational programmes, and reignite a love of learning and hope for the future.

You’ve seen many approaches to inclusion across hospital schools, mainstream settings, and local authorities. What advice would you give to professionals in these different environments who want to work together effectively to support each learner?

Inclusion is not a one size fits all, and looks different depending on the setting, but the common aim is the same - to support every child’s right to a meaningful, accessible and appropriate education. To live and breathe inclusion, we need to put egos and blame aside and build trusting, human relationships around the child, so we all work with respect and humility: this moves inclusion from being a policy to being practice.

It is important to keep the child at the centre and keep that common aim in mind. Ensure that all professionals involved share a unified understanding about what inclusion means and what it looks like in their settings. Consider what the child needs to succeed and how each person can contribute to that success.

Strong open, honest communication systems are important through secure platforms, so everyone is ‘singing from the hymn sheet’ and working together. Through this, support plans can be co-created outlining flexible arrangements that are personalised and transferable.

Ensure all people involved in the care of the child are invited to any review meetings, and where an EHCP is needed, make sure all professionals are involved and are co-authors with the school.

We need to recognize and respect each other's settings, knowledge and expertise. Schools can contact their local hospital school/medical AP to ask for advice and guidance - or they could buy the book!

Management of transitions is key and need to be considered carefully to ensure that no children are ‘lost’ when transitioning back into school after a period of absence. Don’t be scared to do what is right for the child and their needs e.g. use of part timetables, AV1s. Make sure you listen to the voice of the child - they know what they need to be able to be successful in school.

Finally, be proactive and not reactive - don’t wait for the child to be in crisis before intervening and supporting. Build relationships with those that can give you advice and support, ask them to provide you with training, case studies, and link you to other schools who may be experiencing something similar. Again, use your medical AP/hospital school.

Finally, if readers of the book Including Learners with Medical Needs in School take away just one key message, what would you hope that is?

Listen to the child - they know what they need to thrive in school

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Thank you to Cath for sharing not only her expertise, but also her deep commitment to the children often at risk of being overlooked.

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