During my recent visit to the hospital school at Great Ormond Street Hospital (GOSH), the Special Education Needs (SEN) arm of the hospital asked for my feedback on the service. You see, my son Otito was admitted there for one year before he passed away. It was a service that made an absolute difference to him. He loved school and was very fond of all his teachers. They were absolutely brilliant. Looking back, I can only be grateful for their input because they not only gave him the best time in what became the final days of his life, but also they provided us as a family with lasting memories which we will treasure forever.
They asked me to highlight areas where they did badly but sincerely, I could not find any. All I found as I took the trip down memory lane were areas that could be improved on. Many of the you here have sick children or know people who do. Some of your children use GOSH London and other hospitals. I thought that it would be a lovely idea to share the feedback here to help give everyone an idea of what to expect from a hospital school SEN service.
Another objective of this article, in addition to leaving this feedback, is to also add to the visibility that you will hear me propose at the end of this article. I hope you all find it useful and also gain confidence in using this service in whichever hospital your child is admitted especially if they have Special Education Needs (SEN).
So let us start with the good bits…What worked?
- Child-led interaction: The GOSH SEN school program was centred around my son Otito. I thought that the fact that he was allowed to dictate the pace and direction that the activities took made him feel in control. This method respected and acknowledged not only his needs as a child but gave him dignity. It saw him as a human being and not just as a statistic that needed to be ticked off the box. The result was a boost in his confidence because he felt more able to flourish in his own peculiar way without being pushed beyond his abilities.
Do I think this child-led style of interacting with him worked? Yes! and here’s why
- It increased his confidence: Otito was given choices of activities to choose from each time. By selecting an activity he felt in control of the space and made him feel like he took part in deciding what he wanted. The child led approach helped the teachers decide the pace and speed that the session should go by not being pushy and overbearing in delivering the session. It helped the teachers stay in control of the plan and intended outcome for the session.This in my opinion, increased his confidence and modelled good behaviour to him.
- It helped him build trust: It helped him build trust for his teachers. Children like Otito with special educational needs- SEN are accustomed to being interrupted for interventions as a result of their complex health needs. This means that they become very protective of their own space. The child-led style of interaction helped reassure him that his opinions were acknowledged during the learning sessions. This helped Otito build trust towards the teachers that allowed him to learn. For a child like Otito whose complex health needs challenged everyone including the teachers, it was a relief for him to be able to take sessions slowly on gloomy days and enjoy more fast-paced sessions on perkier days. I remember times when Otito became unwell during sessions and how the teachers tactfully ended the session. For Otito his response was usually a mixture of dismay and relief.
- It made learning fun: The child-led teaching helped my boy look forward to teaching sessions. The fact that he was kept at the heart of the flow of the lesson meant that the whole experience became less of an ordeal for him. The child led interaction helped the teachers become more sensitive and empathetic towards Otito’s needs. As a result, they were more able to identify cues and behaviours that signified engagement, distraction or disengagement during the sessions. The teachers were very innovative in their expressiveness and choice of activities meaning that sessions were absolutely fun for him. This helped the teachers form a bond with Otito. This further improved the teaching and learning experience for both teacher and student.
- Tailored teaching: It was very encouraging to see that at GOSH the teaching plans were tailored to suit the specific needs of the child. How?
- Initial sessions were used to assess the peculiar needs of my child before determining the particular equipment or tools to suit him specifically.
- This assessment also acknowledged feedback from us as Otito’s main carers about his particular likes or dislikes.
- There was a lot of observation of my child during individual play to help the teachers familiarise themselves with him, It helped the teachers make sense of what would or wouldn’t work with him.
This method of teaching struck a chord with me as I felt that Otito was respected and dignified throughout the process. It allowed his perculiarities to be taking into consideration during the process of planning, preparing and executing teaching sessions. In his case, the teachers were able to determine what worked for him (for example music toys, light up toys, cause and effect toys and sensory toys) and what did not work (for example messy play and water play).
- Engagement: By mirroring Otito’s preferences with their choice of tools for teaching him, they were able to tailor the teaching sessions to suit him every time. Engaging him in this way not only kept him interested for longer, but gave the teachers the chance to keep steering him towards more complicated outcomes. It gave him the chance to excel at tasks we believed were impossible. For example by using light up toys, giggly balls, cause and effect toys and sensory toys each time, his eye contact went from non-existent to fleeting and then to being held for a few minutes. He was also able to be taught turn taking, something that was initially met with a complete meltdown. He also learned to make choices using picture cards of his favourite toys. For this, he went from choosing by looking in the direction of the cards he preferred to fleetingly motioning towards his preferences.
- Timing: I thought that the graduated timing style worked perfectly. When the teachers first began teaching him, the sessions were shorter and were gradually built up to the target time. It can be difficult to engage with SEN children for long. They need time to adjust to the required structure of learning sessions. Starting slowly meant that the teachers were able to detach Otito from his other half- the iPad. It seemed impossible at first but gradually, he became more able to detach for longer.
- Consistency: Having school, brought in some consistency into Otito’s life. This was very important because as a hospital child, he had many lazy days and have no sense of timing. He was mostly bedbound. Timing also brought in some consistency that split up his day. He began to learn to expect to have school sessions at specific times during the day. Initially coming up with every gimmick from retching, to pretending to be asleep. The consistency in timing meant that he gradually accepted that school would happen at 10 o’clock albeit for five minutes. This helped instil a bit of discipline. With time, his tiredness and aggression for school began to be replaced with a secret expectation. It showed that with consistency and patience, even a complex child like Otito could learn in a structured setting.
- Teaching Structure: The teaching structure adopted by the Gosh SEN team works well for hospitalised children. Beginning with very simple tasks helped break the ice and warm the child up to the idea of having teaching sessions by the bedside or in the hospital school. It reduced the fear, anxiety and aggression that is often associated with school. The gradual introduction of more complex sessions meant that the child having become acclimatised to been scored in hospital, became more welcoming and less resistant of this change. This helped steer them towards more learning outcomes. For Otito, he went from simple play activities to more complex sessions that help build on his attention span and distracted him from his tablet (I-pad) for longer. They also have good cues to help signal different times during the sessions for example welcome songs, tidy up songs and goodbye songs were used. They worked for my boy who was very musical and responded more to singing. With consistency the songs signalled different times during the school time and helped him transition calmly from one activity to the next.
- Variety: this was one of the most important elements that worked with the SEN teaching sessions. They do say that variety is the spice of life and it sure did spice up my boy’s last days with the help of the GOSH SEN team. There were so many learning tools that were adopted to keep him engaged, entertained and educated all at the same time. From small toys to larger toys. Sensory toys, musical toys, cause and effect toys, funny shaped toys, touchy-feely toys… And the list was endless. For a child like Otito, it was a challenge getting his attention. It was a feat to keep his attention when you got it. He was not only very easily distracted but very sentimentally attached to his tablet. It was for him more than just a toy. It was his companion, pain relief, muse and lots more. Variety that GOSH school brought to him meant that he also got to be safely peeled off from his alter ego for a few minutes at a time.
- Providing tools for parents: The GOSH SEN team provided tools for parents and their special children. One of the advantages of having the team in my son’s life as a parent was that I was able to watch and learn tips and tricks that I carried on after the school sessions. This brought him consistency, reduce confusion as we used the same approaches introduced by the school in daily life. In the end it helped reinforce the skills he was learning from school. For example the hospital school introduced a yellow tray to help signal the start and end of sessions. Before sessions, the yellow tray was brought in to signal the start of the session. In the tray, he gradually learns to put his I-pad. Initially you struggle to let go of it but later, he began handing it in willingly. The team also identified that he responded to singing and so, they used songs to signal the start and end of activities during the sessions. As parents, we continued using the same yellow tray from school as well as the songs to help him transition from one activity to the next. He became more able to engage in family activities. We used the same goodbye and hello songs from school when we left or came in contact with Otito. In time, and although he was non-verbal, he gradually made the connection and began humming the tunes back to us. He was able to signal that he wanted to change activities, or that he was tired or simply wanted to say goodbye. He also reached for the yellow tray and this was our cue to changing toys. It was a complete breakthrough for us as a family as it was the first time that we could get any tangible communication from him. You could see the spark in his eyes when we interpreted his needs correctly.
- Record keeping: Just like every school outside hospital, the GOSH hospital school also kept records of the child’s progress. Every term, many outcomes were outlined, discussed and executed. They also acknowledged the parents desired outcome for their child. The school was also in touch with the child’s school. I found this very reassuring. It meant that the child’s progress could be fed back to their own school teachers who then had a chance to continue from where the hospital school had stopped. This ensures consistency and stability for the child. In addition to this, the GOSH hospital school also sent reports to parents at home. I also found this reassuring as a parent because it made me feel like my child mattered to the school. It also made me realise that the schooling he received in hospital was as serious a business as the schooling was locally. One of the recording tools I also found very useful was the school Tapestry app. Tapestry was a platform that will be assessed by parents and the school. Videos of the child during learning sessions were uploaded so that parents and teachers could leave feedback. It is very interactive and safe to use. It also allowed the absent parent share in the session. Privacy and data protection was respected on the platform giving the patient student dignity. For me as a parent it was nice to behold my special boy at the centre of those video recordings being the star in his own show. With a child as complex as he was without too much to celebrate, I felt like he mattered enough to be celebrated in this way by the school and that was special.
Having highlighted on most of the main points that stuck with me as a parent about the hospital school, there are a few areas that I feel need improvement. From the viewpoint of the actual planning, teaching, execution and delivery of the lessons, I will say that I am completely satisfied.
However much of improvement for me, is centred around improving visibility and creating awareness of the school SEN section. In my personal experience, I will say that the SEN arm of the school is not very visible. People hardly know that the service is available as part of the hospital school. I personally went enquiring about the SEN arm of the school because my son had an Education health care-EHC plan. There are lots of posters around awards and hospital that tell about the existence of the school. They failed to highlight the fact that there are SEN teachers available.
In order to help improve this visibility here are some suggestions:
- Signposting: The nursing staff can help signpost families to the SEN team. The long-term patients are more likely to require the services of the SEN teachers. Not all sick children have learning disabilities. Also, not all children with learning disabilities have been formally diagnosed especially when they are under 3 years of age. The nursing staff have more direct day-to-day contact with the children on the wards. Adequate training will mean that nurses become more able to identify potential SEN children. Such parents can then be signposted to the service through the use of leaflets or making of adequate referrals. I was in the hospital for a year and in my time, i met many parents who did not even know about the SEN team.
- Leaflets: The hospital school and rollout leaflets that can be handed out to parents with potential SEN children. The current leaflets being used by the school are not very eye-catching. More user-friendly and brightly coloured leaflets can be produced to help introduce the service and create awareness about this useful arm of the hospital school.
- FAQ’s Sheet: I propose the use of FAQs sheet to be handed out alongside the leaflets. During my interaction with parents around the wards while I was resident in the hospital with my son, I discovered that some niggling questions that parents have, created barriers that deter them from accessing simple services. By creating a FAQs sheet, the school will be able to answer possible questions that parents might have and burst many myths about what the school can and can’t offer. I shall give below some possible questions that FAQs might be centred around based on many that have been asked as a parent while signposting the service:
- can my child be seen without an EHC plan?
- does my child need a diagnosis of having learning disability before they can access the SEN school service?
- can my child use the service even with a device?
- does a body nurse need to be present during the session?
- what if my child is too sick to come down to the school?
- can teachers come up to the wards?
- what if my child gets tired during a session?
- can siblings participate?
- do I need to always be present during the session?
In addition to the above, I have also added some FAQs from parents that I came in contact with that may be useful to the activity centre:
- is the service only for patients?
- what is the minimum age for attendance?
- is this a drop-in session or do we need to register and fill out forms?
- can siblings attend?
- do I need to accompany my child?
- how long does the session last for?
- what are the opening and closing times?
- my child has advice will this be a problem?
- do I need to pay?
- are you open on weekends?
In conclusion, I would like to thank every member of the hospital school including the activity centre and early years teams for all their support to my family in what became the last year of both Otito’s life and my hospital residency. The school provided us with great memories which we will treasure forever. It was an absolute honour to cross paths with the most amazing hospital school team in the world. Thank you also for requesting this feedback from me because it was a joy to write. Please feel free to contact me anytime if there’s anything I can do to help.
Special thanks to Ruth, Jackie, Helen, Anthea, Suki and the Computer tech man (I cannot remember his name). Lots of love from us all.
RESPONSE FROM THE HOSPITAL SCHOOL
The Children’s Hospital School at Great Ormond Street & UCH
Tel. 020 7813 8269
Great Ormond Street Hospital for Children NHS Foundation Trust | London WC1N 3JH