PA0160

Written evidence submitted by Dr Simon Pini

I am responding to this call for evidence as an individual, but to represent the young people with long term physical health conditions and their families who have participated in the research I have conducted in this area. I am an NIHR Senior Research Fellow based at the University of Leeds, with research collaborations with clinicians, allied-health professionals and academics across Leeds Children’s Hospital, West Yorkshire Integrated Care Board and the Centre for Applied Education Research in Bradford. In earlier research I focussed specifically on teenagers and young adults with cancer, and have published a series of research findings related to the education needs and outcomes of this groups (1-6). During this work I learned that the school related problems experienced by this group were defined more by their position as young people with health needs trying to fit into an inflexible school system, than by their cancer diagnosis. Therefore in my current NIHR research programme I have focussed on secondary school aged pupils with long term physical health conditions covering the following groups: Oncology, Neuromuscular, Cystic fibrosis, Colorectal surgery, Diabetes, Chronic pain, Asthma, Allergies, Rheumatology, Dermatology, and Haematology. Young people have been participating in interviews and focus groups to describe in their own words what they experience when navigating their lives at school. This project builds on a literature review where we synthesised research findings to show that young people with long term conditions have common difficulties with falling behind with work, relationships with peers and staff, and balancing “normality” with the additional needs they may have (7).

Through their stories in our current interview and focus group study young people have described six fundamental needs relating to their lives at school, which can be broadly classified as follows:

• Need to manage my health condition safely at school
• Need for a flexible education pathway to accommodate the demands of my health condition
• Need to feel seen, acknowledged and listened to at the right times in the right way
• Need to feel included in and supported by my school community
• Need to build towards my future
• Need to develop an approach to adapting to school life with a health condition

There is much more to say about the extent to which these needs are met within schools for this population, but the focus here is on attendance. Attendance has become the key outcome measure for successful engagement with education and is an element of school life that can impact, or be impacted by, any of these fundamental needs. Unfortunately attendance has to some extent become synonymous with young people who are successfully engaging with their education. However, a young person attending school does not tell us what their experience is like when they are there, or how they adapt when they are not able to attend. The young people and families I have met during my research often work extremely hard to overcome the physical, emotional, psychosocial and logistical challenges presented by their health conditions in order to be able to attend school. However, inevitably they have unavoidable absences due to the symptoms of their condition, side-effects of treatment, hospitalisation, medical appointments and procedures.

Young people often describe feeling under pressure to attend school and that not enough allowance, care and understanding is given to the inevitable difficulties and absences they will encounter because of their health conditions. There are many examples of participants describing repeated phone calls and letters home to ask for clarification on why attendance is not meeting school targets. This can result in significant frustration for young people and families, who often describe feeling like they are forever repeating the same information and not being heard. They can end up feeling they are not a valuable part of their school community and that the attendance figures carry more importance.

“because in sixth form, their minimum attendance is usually 95, so I think because I'm on like 70 they're like, oh, you know, this is an issue, they'll be calling my dad saying, why isn't she in, she needs to be in, they’ve pulled me out a few times saying, listen, we know but you need to come in, stuff like that…that's one of the reasons I'm not really comfortable talking to my Head of Year” – A 16 year old with a rheumatology condition

The inevitable missed time from school because of physical health conditions results in many young people feeling like they are in a constant cycle of falling behind and having to catch up with work and other aspects of school life. The vast majority of participants describe self-directed learning and copying from friends as the primary methods of catching up on missed work. Teachers often do not have the flexibility within their working day to reasonably attend to the needs of these young people when they have missed time, which often leaves them to fend for themselves. This is not the fault of teaching staff, but is a reflection of the pressures they face in terms of time, resources and the delivery of quantifiable targets, data and reports.

“catching up outside of school it’s quite difficult because my medication makes me sleepy, so I’ll go to bed like really early and wake up as late as I can and it’s just I felt at one point it was just a cycle of sleeping, school catching up, sleeping, school catching up, and I think it does get quite like almost dizzy and monotonous because it’s just so continuous” - A 15 year old with chronic pain

Many schools incentivise and reward attendance and one of the most common experiences in relation to attendance for this group is rewards and reward trips. A significant number of participants in our research, and in other forums within the Children’s Hospital, have described missing out on rewards because of falling short of attendance targets. In some cases whole classes have missed out on rewards because of a child with a health condition lowering the class attendance averages. Absences for this group are inevitable, and to be penalised for this in the face of all of the other challenges inherent in coping with health conditions is unacceptable.

“my school is quite extreme about attendance…they do rewards for attendance and I was set up to get one of them, but I had to miss a day to go to a medical appointment for my diabetes and they assured me that wouldn’t affect my attendance because it was medical and then they backtracked on it and said I couldn’t go because of that” – 13 year old with diabetes

“what really upsets me is when school have reward days if you’ve got over 97% and you’re there and all the class has gone for pizza and you’re sat in the class and you’re like “it’s not my fault” – 15 year old with diabetes

Based on the needs and experiences described by participants I would recommend attendance policy for young people with long term health conditions should consider the following factors:

• Ideally, we need a school culture that does not focus on deliverable attendance figures, but works flexibly with its students and families to accommodate individual circumstances
• School personnel should be given more flexibility and freedom in their timetable through a reduction in deliverable attendance (and other administrative) data, which could be better spent on holistic work with the pupils and families who require it
• If attendance figures are to remain a key outcome measure, then absences related to known health conditions should be recorded in a way that does not detrimentally impact that young person’s school record or preclude them from attendance related rewards
• Young people with known long term health conditions should not be held to the same attendance targets as their healthy peers
• Ensure that health conditions are recorded clearly in school records, so that correspondence to young people and families related to attendance enquiries can be sensitively managed
• To support this, assign a specific member of staff to liaise with families of young people with long term health conditions. All communications to these families should go through this member(s) of staff to reduce repetition of information and improve understanding of individual pupil and family circumstances

Improving attendance at school is clearly an important and worthwhile aim, with many benefits for young people’s academic, psychosocial and emotional development. However, a school culture that places too much emphasis on deliverable attendance data has unintended consequences for the workload of school personnel and the wellbeing of pupils with long term health conditions.

1.              Pini S. Education Mentoring for Teenagers and Young Adults with Cancer. British Journal of Nursing. 2009;18(12).

2.              Pini S, Hugh-Jones, S., Gardner, P, H. What effect does a cancer diagnosis have on the educational engagement and school life of teenagers? A systematic review. Psycho Oncology. 2012.

3.              Pini S, Gardner P, Hugh-Jones S. The impact of a cancer diagnosis on the education engagement of teenagers“Patient and staff perspective. European Journal of Oncology Nursing. 2012.

4.              Pini S, Gardner P, Hugh-Jones S. How teenagers continue school after a diagnosis of cancer: experiences of young people and recommendations for practice. Future Oncology. 2016(0).

5.              Pini S, Hugh-Jones S, Gardner P. How and why school is important to teenagers with cancer: outcomes from a photo-elicitation study

Journal of Adolescent and Young Adult Oncology. 2018;in-press.

6.              Pini S, Hugh-Jones S, Shearsmith L, Gardner P. 'What are you crying for? I don't even know you' - The experiences of teenagers communicating with their peers when returning to school. Eur J Oncol Nurs. 2019;39:28-34.

7.              Spencer BK, Wright J, Flemming K, Cottrell D, Pini S. School lives of adolescent school students living with chronic physical health conditions: a qualitative evidence synthesis. Archives of Disease in Childhood. 2022.

February 2023