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Engaging the public

We are working with patient, pupil, parent and public engagement groups to understand different views on the use of linked health, education and social care data for research. This includes getting valuable feedback on our research plans for the ECHILD project.

Who have we been working with?

We would like to express our thanks to all children, young people, parents, carers and others who have given their time to this project by being involved in our engagement events.

So far, we have worked with the:

What have we learned?

National Children’s Bureau Young Research Advisors - 04/08/2020

Most young research advisors were not familiar with Hospital Episode Statistics or National Pupil Database and the fact they contribute to this data. Advisors view collecting and using data this data as desirable if it is used for the wider public good.  Some advisors expressed general concerns about large organisations holding too much personal data.

What we learnt about schools and hospital treatment during Covid-19:

  • Lockdown led to a general sense of anxiety and losing control, but different groups had very different experiences.
  • Mental health is viewed as a crucial issue, lockdown saw none of the regular safeguarding from schools, CYP are committing more self-harm, CYP and mental health problems are unseen by pupils and teachers and become hidden.
  • There were worries about food insecurity (i.e. free school meals), experiences of bereavement, parents losing employment, delays with hospital treatments, awareness of parent's stress, overcrowding at home, feelings of isolation and increasing disparity between affluent and deprived families.
  • The group did not like the term vulnerable children. They preferred to speak about children and young people with additional needs. 
National Children’s Bureau Families Research Advisory Group - 15/09/2020

Advisors believe that data needs to be contextualised in people’s real lives, but overall they are supportive of the use of ECHILD data.  There are lots of concerns about children’s education experiences and children getting lost and forgotten in the pandemic.

What we learnt about the impact of the pandemic on education:

  • There is a worry that familial factors will not be reflected yet in linked data, e.g. if a parent dies, loses employment, alcoholism develops, or a lack of access to technology for learning.
  • Work sent home for children with Special Educational Needs (SEN) is not always appropriate, so they could easily fall even further behind.
  • Children and Young People (CYP) have all had such different experiences of school.  It may be very hard to identify how lockdown has affected individual children and how to provide the required support.

What we learnt about vulnerability:

  • Advisors prefer the term “children with additional needs”, one parent thought it implies they (parents) cannot look after children. Advisors disagree with DfE definition, and this is an opportunity to give it some thought and also recognise the benefit of diagnosis (e.g. children with autism without a diagnosis are not having their needs met at school).

Consideration is also needed about who is missing from the ECHILD database? Who is still vulnerable but has not been identified, or has become vulnerable during COVID-19?

Council for Disabled Children FLARE - 14/11/2020

The Children and Young People were not aware of Hospital Episode Statistics or National Pupil Database, let alone administrative data. They felt strongly about the need for better awareness about administrative data. The group was very positive about linked data being used to improve health and education services and to better support those similar to them. The group needed reassurance that there are procedures in place to safeguard the data. 

These engagement events have been extremely valuable and started many discussions.  One of the participants has a blog article following recent discussions on the label of vulnerability.  This can be found here: "vulnerable to overuse".

Hear a young research advisor's thoughts on ECHILD:

YouTube Widget Placeholderhttps://youtu.be/Ia--9Gcz05o

Hear a young research advisor's thoughts school closures during lockdowns:

YouTube Widget Placeholderhttps://youtu.be/bqSJvTgGzWc

Great Ormond Street Hospital for Children NHS Foundation Trust Young People’s Forum - 20/03/2021

School absence was a highly sensitive topic with this group, given all members had health needs which necessitated school absence. The group highlighted a frequent lack of support and understanding with their respective schools.

What we learnt about school absences:

  • There are many reasons for absences: Hospital appointments, feeling unwell, religious holidays, family commitments and mental health.
  • Mental health is often linked to school absences. There is a frustration when having to miss school. 

What we learnt about reducing school absences:

  • There are avoidable absences that something should be done to reduce (e.g., making schools safer/supportive to reduce absences due to mental health/bullying). 
  • There are unavoidable absences that something should be done to support (e.g., virtual classes when ill/recovering from an operation). 
  • There are absences that seems unavoidable on the surface, but may actually be avoidable if healthcare is changed (e.g., absences due to medical appointments could be reduced if appointments were outside of school hours or delivered in schools).   
  • The focus in schools on good attendance and presenteeism can be demoralising for young people with health conditions.
  • Pupils who are ill should be encouraged to stay at home, to recover fully and not expose others to viruses and illness.
  • Pupils can better engage with their learning if fully recovered.

What we learnt about how schools and hospitals could help?

  • There is a conflict between being encouraging to look after your mental health and taking time off, as this can result in falling behind with education, which in turn negatively impacts mental health.
  • There are feelings of being ‘singled out’ due to absence.
  • Technology, in terms of virtual classes, would help improve attendance if being at school in person is not possible.
    NIHR Great Ormond Street Hospital Biomedical Research Centre (BRC) Parent and Carer Advisory Group - 23/03/2021

    What we learnt about school absences:

    • Parents described variable experiences with schools and their child’s health-related school absences.
    • Some schools were supportive and used interventions to help students (e.g. virtual lessons)
    • Some schools left parents feeling “victimised for absence”, even if the absence was unavoidable because of hospital appointments.
    • There can be tension between overloading a student and also making sure a child does not fall behind.

    What we learnt about how schools and hospitals could help?

    • A helpful model may be online lessons, blended with in-person lessons.
    • Government backing, and free WIFI in hospitals could help.
    • Better communication between schools and healthcare could help, perhaps including a coordinator/liaison function. 
      NIHR Great Ormond Street Hospital BRC Young Persons Advisory Group (YPAG) - 27/03/2021

      What we learnt about school absences:

      • There are many reasons for absences: Poor mental health, too much workload, pressure from teachers, bullying, family responsibilities, health issues and appointments, a perception of insufficient support upon return and worries about exposure to Covid-19.
      • Reducing school absences is important, but it is also important to look at different ways to provide schooling if absent.  This should avoid pressures to complete a large amount of work.
      • School absence is something that should be considered on a case-by-case basis.  Every pupil has a different situation and requires individual support.
      • The focus should be on improving the support system at school rather than reducing absences.

      What we learnt about how schools and hospitals could help?

      • Better communication about long-term conditions.
      • Better informed teachers able to understand and provide support.
      • Reduce pressure to attend school if unwell, especially as this can increase contagion. 
      • A liaison member of staff, either based in hospitals or in schools, could help coordinate the schoolwork missed.
      • More trust from teachers when returning to school and reporting reasons for absence.
      • Free WIFI in hospitals to support schoolwork being completed when in hospital.
      The ECHILD Stakeholder event – 21/04/2021 

      This event brought together a range of stakeholders from government departments, the third sector and children’s services with expertise in health, education and social care. The purpose of the event was to provide an opportunity for stakeholders to ask questions about and share their views on the ECHILD Database and its use in future research for the public benefit. A more detailed report describing discussions at the stakeholder event can be found here.

      What we learnt about stakeholders’ views on the ECHILD Database and its use for research

      • The key strengths of the ECHILD Database were seen to be its coverage of the whole population and the ability to cut across areas the interrelated areas of health, education and social care.
      • Stakeholders raised the importance of data security in research using linked administrative data. ECHILD project partners explained that data security has been a central consideration when creating the ECHILD Database and will continue to be crucial when making the data available for wider use by accredited researchers.
      • Stakeholders questioned whether commercial organisations would be able to use the ECHILD Database. ECHILD project partners highlighted that all future research using the ECHILD Database - whether proposed by accredited researchers from academic, third sector or commercial organisations - will need to demonstrate a public benefit by promoting children’s education and wellbeing, or the provision of health and social care services.
      • Stakeholders emphasised the importance of continuing to embed children and young people’s voices in the way the ECHILD Database is made available and used by researchers.
      • Stakeholders also discussed the importance of engaging with intended users of the research (such as school leaders and teachers) to ensure that research findings are useful to them and they can understand and apply them to the immediate benefit of children and young people. 
      • Stakeholders expressed an interest in expanding the range of datasets included in the ECHILD Database to broaden the types of research questions it could address. 

      Hear from the ECHILD Project Partnership Panel Members as they answer introductory questions at the April 2021 ECHILD Stakeholder Event:

      YouTube Widget Placeholderhttps://youtu.be/jfNFa-EsY3k

       
      Great Ormond Street Hospital National Children's Bureau Families Research Advisory Group (FRAG) – 30/06/2021

      In this session, we explored the relationship between children’s health and education using two examples: preterm babies and children who have Special Educational Needs and Disabilities (SEND). 

      What we learnt about how being born preterm can affect children’s education

      • Early intervention to support preterm babies’ development is key and should be offered to all babies as soon as possible following birth, rather than waiting for problems to emerge later on.
      • Sure Start and Children’s Centres play an important role in supporting preterm babies’ early development. If they continue to be scaled back, outreach services will need to fill the gap.  
      • The Early Years workforce requires more training to support preterm babies’ development. 
      • The school system does not seem to account for children who were born preterm. For example, it does not account for a preterm child’s adjusted-age in terms of educational assessments or when they start school.  

      What we learnt about how Special Educational Needs and disabilities (SEND) support can affect children’s health

      • It can be difficult for parents to navigate complicated systems to get the level of SEND support their child needs. It may be even more difficult for parents who aren’t familiar with the system or don’t speak English as a first language. 
      • It is not always clear where the responsibility for protecting and promoting the health of children with SEND lies: schools or hospitals? For example, if a child has a communication difficulty, speech and language therapy may help to improve both their health and educational outcomes, but there can be confusion as to whether schools or hospitals should be providing this support. 
      • Staff in schools and healthcare settings (including GP surgeries) need more training about how they can best support children with SEND, including those with learning difficulties and autism. 
      • SEND support can have unintentionally negative effects on children’s health. For example, being removed from lessons to get extra support may make children feel different from their peers leading to mental health issues.
      Council for Disabled Children FLARE - 18/09/2021

      In this session, the children and young people from the FLARE group offered valuable insights to the lived experiences of receiving Special Educational Needs and Disability (SEND) support in school and higher education.  The group were very positive about sharing their own experiences, as well as offering key points to consider in the research moving forward. Some of these included:

      • Exploring post 16 support, the stages in school when most support is needed,
      • The positives and negatives of receiving support, 
      • The varying types of support offered to children and young people. 

      What we learnt from FLARE:

      • The use of correct terminology is paramount when working with children and young people with SEND. This has resulted in the language used in our research being revised.  FLARE will be engaged to help confirm new the new terminology that we aim to use.
      • SEND support varies across the country and across the age ranges.
      • Further investigation is required to explore the experiences of more children and young people who currently receive or have received SEND support in school.
      Great Ormond Street Hospital National Children's Bureau Young Research Advisors Group - 16/10/2021

      In this session, the Young Research Advisors discussed their views on how the pandemic has affected their education and health services.  Advisors also gave their priorities for what ECHILD should focus on next.

      What we learnt about how the pandemic has impacted Children and Young People:
      Education:

      • At the initial stages of the pandemic, there was little interaction with schools and colleges. 
      • In most cases online teaching replaced in person teaching.  This was generally not considered frequent enough. 

      Health:

      • Appointments were cancelled during the pandemic and there were difficulties in getting new appointments. 
      • In person health support was generally replaced with telephone appointments and advice services, such as 111.

      What we learnt about the Young Research Advisors’ priorities for future research:

      Research should consider focusing on:

      • The impact of the pandemic on mental health and levels of stress and anxiety.
      • The impact of missed planned healthcare.  E.g. emergencies created or alternative ways that young people used to self-manage their health conditions.
      • What early interventions can be put in place to prevent or manage chronic conditions. 
      • Different approaches (E.g. testing, social distancing, face masks) for keeping young people safe in school whilst minimising school closures and the impact on education.
      Council for Disabled Children FLARE - 20/11/2021

      The FLARE group gave their thoughts about how children and young people with SEND can be better engaged and involved in research.  The group also recommended how research information and findings can be made more accessible.

      What we learnt about better engaging children and young people in research:

      • The language traditionally used in research is often too complex, this makes it hard to understand what is involved.
      • The designs of research materials can often be seen as 'boring'.  The use of coloured fonts and pictures make material much more engaging.
      • When first contacting children and young people about research, use information flyers to grab attention with a brief and clear overview of the research. 
      • Animations are highly recommended when explaining more details about research.
      NIHR Great Ormond Street Hospital BRC Young Persons Advisory Group (YPAG) - 27/11/2021

      In this session, we discussed the linking of health and education data, support for students with additional needs and the impact of school absences on educational outcomes.  

      What did we learn:

      • Moving to a new school (e.g. starting school, moving from primary to secondary school) can be overwhelming. Additional support could help young people settle in a new environment.
      • Exams and applying for the next stage of education are stressful. There is a need for extra support (practice sessions, worksheets/ practice exams, guidance for writing applications). 
      • The group felt there was not enough support during COVID for online learning. Sometimes students felt overwhelmed by the volume of online homework. 

      How can students be better supported?

      • If teachers were more aware of different types of special educational needs (e.g. dyslexia, dyscalculia), they could better identify pupils who need support sooner. 
      • Schools are often unaware of medical care students are receiving.  Young people have to advocate for themselves.  Having to continuously tell others what is happening is exhausting.
      • Communication between health and education is needed, e.g. a letter from a GP or hospital to inform schools.
      • Young people who miss school because of health needs found tailored timetables and personalised sessions helpful. They were able to go back at a pace that worked for them.
      • Peer support is also very important. There is a need for empathy and understanding. A buddying up system could help with catch up after coming back following time off.
      • The group felt it is important to have someone to talk to or a place to go when they feel overwhelmed in school. 
      • The accessibility of schools can be improved (e.g. not enough lifts).
      Great Ormond Street Hospital National Children's Bureau Young Research Advisors Group - 02/04/2022

      In this session, we discussed the support for children with additional needs.  The aim of the session was to ensure that children and young people had the opportunity to give feedback on the topic areas of an upcoming national survey, and to suggest questions they thought we should include. 


      What we learned from the session:

      • The group thought our topics areas were comprehensive and encompassed the key stages in seeking extra support.
      • The group offered great insights to the questions the survey should be asking.
      • The group suggested alternative avenues for future research, specifically the exploration of children and young people’s involvement in the assessment process of applying for an EHCP. 
      • The Survey needs to be brief and to the point, as well as being made as widely accessible as possible, to ensure the Survey does not exclude key group of children and young people with SEND.
      National Children’s Bureau Families Research Advisory Group (FRAG) - 15/06/2022

      In this online consultation, parents and carers gave their opinions on the potential linkage of mother and baby records in ECHILD.  This potential linkage could also support sibling’s information being linked in one place.

      What we learnt about views on the linking of a mothers' information to a child's record

      • All of the parents and carers consulted were supportive of mother and baby records being linked in ECHILD.  40% believe that linkage should be allowed for research into specific topics, 60% believe linkage should be allowed on a routine basis for a wide range of research.
      • Different research purposes for linkage were presented to FRAG:
        • 89% of parents and carers said they felt comfortable or very comfortable with linkage being used to understand how a mother’s health and behaviours may impact on a child's health and education.
        • 78% of parents and carers said they felt comfortable or very comfortable with linkage being used to understand the whole family including siblings, so that hereditary illnesses can be considered.
        • Similarly, 78% of parents and carers said they felt comfortable or very comfortable with linkage being used understand as much as possible about the mother at birth.  

      What we learnt about views on a father’s information being linked to a child's record

      • Currently, a father’s information is not stored on a child’s health record.  89% of parents and carers agreed that a fathers' information (i.e. their NHS number) should be recorded on birth notifications to enable more research.
      Riverside School, Haringey LA secondary special school - 13/07/2022

      In this session the team explored how a special school is run on a day-to-day basis.  This engaged Riverside's headteacher, teachers and teaching assistants and involved observing pupils during their school day.  

      What we learned from the visit:

      • 1:1 pupil support is minimised at Riverside, this is to balance stability vs dependence on just one individual.
      • Riverside has comprehensive and strong links to the wider community, this supports regular input from the health and care services.
      • Riverside provides a superb programme of extra-curricular activities and training for its pupils.
      • We have a need to visit more schools across the country, to gain a better understanding of differences in Special Education Needs and Disabilities (SEND) provision, in both Special and Mainstream education settings. 
      • When communicating with parents and carers, various communication platforms should be used.  Infrequent access to email is quite common. 

      A follow up visit to Riverside is being arranged for later in 2022.  This will engage pupils with a survey to explore variations in SEND identification and provision (https://redcap.link/HOPEsurvey).   The next visits will also engage staff to discuss characteristics of health conditions needing SEND provision and the expected changes to outcomes from receiving support.

      University of Cambridge Primary School (UCPS) - 10/10/2022

      In this session the team explored the work within a mainstream school to support the inclusion of children identified with SEND.  This included a tour of the school, dropping into lessons and meeting pupils, and also meeting with the headteacher, SENDCo and Director of Inclusion and community to understand more about SEND provision at UCPS.

      What we learned from the visit:

      • UCPS is a little distinct from many primary mainstream state schools, having opened recently in 2015 and through its close links to the University of Cambridge Faculty of Education in Initial Teacher Education (more information found here: https://universityprimaryschool.org.uk/about-our-school/).
      • Learning Coaches (TAs) have a dynamic role working with multiple children across classes and also perform weekly personal and professional development training.
      • There is great the complexity in the daily decision-making in schools, including around SEND support and independence plans.  The use of administrative data to define and measure what is happening is not a clear-cut task.
      • UCPS’s approach to inclusion is very impressive, spending time at UCPS was very uplifting experience.
      Parents and Carers from the PenCRU Family Faculty - 18/10/2022

      In this session we talked to parents/carers of children who receive special educational needs (SEN) provision to learn about their experiences. We wanted to understand whether receiving SEN support made a difference to their child’s and family’s health and wellbeing, and how was it noticed that their child needed support. 

      What did we learn? 

      • Parents and carers have to navigate complex and often unfriendly system, and become advocates for their children. Good and supportive SENCOs can made a difference to their and their children’s experience.  
      • There was a varying level of satisfaction with education, health and care plans (EHCPs); while some families experience good support, others find EHCPs hard to read, not specific to their child and their needs. Having an EHCP does not necessarily mean appropriate level of support suited to the child’s needs. Often, EHCPs are only allocated at crisis point, triggering involvement and funding form local authority. 
      • The support for pupils with EHCPs is not always suited to their needs and parents need to advocate for their children. Translating health needs into education setting is challenging (even when medical documentation stating needs is provided), the systems are not well coordinated.  However, once children receive appropriate support tailored to their needs, their learning, confidence, happiness, functioning improves. 
      • Some children had good support and educational experiences during COVID pandemic, but changes in routines and level of available support due to return to school have impacted their mental health 

      Who are we listening to next?

      Our next confirmed events are:

      • A report from a nationwide survey of children and young people with disabilities and their families, expected early 2023.
      • Further engagement with advisory groups are currently being arranged for this winter. 

      How can I contribute?

      A new UCL led study called HOPE (Health Outcomes for young People throughout Education) is using the ECHILD database to find out if extra help in schools for children & young people with special educational needs or disability (SEND) improves their health. The findings will enable policy makers, service providers and users to make evidence-informed decisions about who might benefit from SEND provision as we recover from the COVID-19 pandemic. HOPE is looking for parents and carers to join a stakeholder group to ensure research is shaped by the experiences of parents, carers and children who receive SEND help. More information about getting involved in HOPE can be found: here.

      We want to use the ECHILD project to answer questions that children, young people, parents and the public think are important and useful. If you would like to share your personal views on the research we’re doing, or suggest other questions we should look at, please use the form below or contact the team at: ich.echild@ucl.ac.uk.

      The ECHILD database cannot be used to identify individuals. However, it can tell us about groups or characteristics of children who might benefit from additional support, information or monitoring. To help with thinking about other ways of using ECHILD, here are some examples questions that we are addressing, or could be addressed in the future: 

      • What is the impact of the pandemic lockdown on children with vulnerabilities or additional needs?
      • Do delays in surgery or other treatments affect children’s learning later on?
      • How do different health problems affect time off school?

      We’d love to hear from you using the forms below (all feedback is anonymous):

      Jot Form Widget Placeholderhttps://form.jotform.com/210262094414345