Please take a look at the report here and share this within your networks.
The Special Educational Needs and Disabilities (SEND) and Long Term Conditions (LTC) NHS Youth Forum work stream have launched their report on how young people with Special Educational Needs and Disabilities and/or Long Term Conditions experience education.
Over the last year, members of the NHS Youth Forum have been working in groups to improve health and social care services for young people in certain areas, one of which was targeted at young people with Special Educational Needs and Disabilities and/or Long Term Conditions.
The report is a reflection of young people’s views of their time in education and informs educators of the preferences children and young people have in an educational setting.
The report has gathered the views of children and young people aged 11-25 years old through a feedback form which addressed two broad questions: ‘when I attend my educational setting I feel…’ and ‘I would like my teachers to know…’.
The aim of asking these questions was to ensure that the group had a full understanding of what that would improve the experience of young people with Special Educational Needs and Disabilities or Long Term Conditions in education, and that we would be able to translate this into a guide for educators to best support those young people.
You can also find an accessible video version of the report here:
If you would like this report to be produced in a format that can be read by a screen reader, please get in contact with us at NHSYouthForum@byc.org.uk
Members of the NHS Youth Forum got together with Dr Peter Green from the National Network of Designated Healthcare Professionals for Children (NNDHP) to create a report for the United Nations Committee for the Rights of a Child.
After being consulted by the National Network of Designated Healthcare Professionals for Children on their report: ‘Health thematic for consideration prior to the review of the UK by the UN committee for the rights of a child’, the Youth Forum wrote their own report for consideration by the UN committee for the rights of a child that addressed the concerns and views of the NHS Youth Forum.
This report looks at the five issues outlined in the National Network of Designated Healthcare Professionals for Children report, as well as a further issue young people thought to be prevalent. These issues are:
• Infant mortality, Maternal death in childbirth and Adolescent Mortality
• Malnutrition
• Looked after children
• Child poverty + UN sustainable development goals
• Promotion of health and wellbeing
• Gender identity
The report was co-led by Haris Sultan and Sonia Beard, with writers, Ray Everall and Emma Beeden, and illustrated by Beci Ward.
You can read the full report here.
What is #mycovid19pledge?
The idea behind #mycovid19pledge was conceived in a conversation between a young cancer patient who is currently shielding and the NHS Youth Expert Advisors. The idea was co-produced with the youth members of the Children and Young People’s Transformation Board, the NHS Youth Forum and #iwill ambassadors. It’s impossible to have not heard about COVID-19. Young people may be at home at the moment but this has not stopped them from volunteering, taking up jobs as key workers, caring for loved ones and encouraging their peers online. We are asking you to share your #mycovid19pledge to change this, to highlight the role of young people in this crisis and to give young people a space to share how they are using their time. Your pledge can be anything: to continue self-isolating, be in bed before midnight, to message a friend you haven’t spoken to in a while, or making a commitment to volunteer.
This campaign will run across multiple platforms, including Twitter, Instagram and Facebook to encourage young people to share what they’ve been doing throughout this time to look after themselves, help others and support their community.
What are we pledging?
As one of the youth representations on the Children’s and Young People’s Transformation Board, #mycovid19pledge is to look after my parents (both of whom are key workers) . This time last year, I was busy trying to wrap up the dissertation for my intercalated Global Health degree.
The last thing on my mind when I was revising for my exams, trying to learn the difference between an endemic, epidemic and pandemic, was that a year later, was that I would be in the middle of the largest health crisis since the Spanish Flu in 1918.
It has forced the whole world to pause and perhaps that is what we needed (the ozone layer is definitely thanking us!). The silver lining in this situation for me has been being able to spend time with my parents, which was usually lost in the ‘daily grind’ of hospital shifts and life admin. We’ve been able to eat Iftar together almost everyday (the evening meal which breaks the day’s fast during Ramadan), something I would have been missing if it had been a ‘normal’ year at medical school. We’ve been given time to reset, let go of what isn’t serving us and think about our health. Yet who looks after our carers? This thought led to my pledge of looking after parents who are key workers (working proudly for the NHS!).
In the conversations that we have had with young people, we’ve heard from young carers, those struggling with staying with family whether that be due to the difficulties being trapped inside for autistic individuals, or LGBTQ teens with homophobic families. Many young people sit at the intersections of these groups, many struggling with food poverty, having recently lost jobs or family members to COVID-19. During COVID-19, young people have been very absent in the dialogue but their voices matter. We’re committed to making sure that youth voice is heard in the NHS and the youth sector, we’re doing our bit, be it big or small.
Our message is clear we’re physically apart but with the #mycovid19pledge we’re virtually together, (at least we have one place where we don’t need to worry about social distancing!) You can get involved by sharing your own #mycovid19pledge to showcase what you’re up to at this time, whether it be positive social action, messages of solidarity or self care. Simply record a video, take a picture or tweet your pledge! Make sure to use the hashtag #mycovid19pledge so we can see your pledge.
If you’d like you can even wear a uniform or t-shirt that presents an organisation you’re part of, in your video pledge. Do tag you friends to get involved too.
Below are some examples of pledges for some inspiration:
Hannah – NHS Youth Forum Member
Sonia – NHS Youth Forum Member and NHSBT Tissue Ambassador
Samya – NHS Youth Forum Member and Children and Young People’s Transformation Board Member
Mike – Paramedic and Children’s and Young People’s Transformation Board Youth Member
#mycovid19pledge is to volunteer for the NHS and support my community
#mycovid19pledge is to be in bed before midnight
#mycovid19pledge is to check in on the people that matter to me
This campaign was created in collaboration with young people and the support of organisations such as:
- NHS Youth Forum
- British Youth Council
- Association for Young People’s Health
- RCPCH&Us
- Step up to Serve
- The Scouts Association
- St. John’s Ambulance
- The Prince’s Trust
- CLIC Sargent
- Rising Arts Agency
Want to make a pledge? Open the partnership guidance here but please do be creative and come up with your own!
During my time on the recent NHS Youth Forum, I loved having my views and opinions heard by significant people of our National Health Service. However, I ensure that it is not for my own benefit, but for the children and young people in Herefordshire who are receiving treatment and care from Wye Valley NHS Trust. I met regularly with the managing director, human resources director, and senior clinicians in paediatric care, to feedback the views of young people. Being a member of this incredible, national forum has provided great opportunities, including attending meetups where youth forums from hospitals across England come together to brainstorm ideas.
As we were unable to physically meet up, I found having a virtual residential an interesting way of bringing the 2019/20 NHS England Youth Forum together for a final time and it was lovely to see everyone again through Zoom or Webinar. I was able to be more vocal during these sessions as I find it easier to speak out in group situations over video calls. I would strongly recommend the British Youth Council considers holding more virtual based meetings and residentials with young people who are involved in the various programmes that they lead. We were also able to have engaging conversions with senior leaders from NHSE & NHS Digital during these sessions, enabling us to make a positive impact on how the NHS run services and engage with young people in the feedback sessions. I believe that this was a positive step as it enabled me to engage with the NHS and not have to worry about having to travel anywhere which I can sometimes find difficult as a wheelchair user.
In November 2019, when the current NHS England Youth Forum Project began, I decided I wanted to look into creating a youth forum for young people. I hoped that this forum would provide a space for young people to tell professionals their views within their local primary care network in Herefordshire, as I believe that young people were being overlooked by their local GPs. I approached Hereford Medical Group, my local primary care network, with my forum idea, and at the beginning of my engagement with senior officials at the practice they were keen to hear about my project but as time went on the engagement stopped and I haven’t been able to achieve what I set to do. I have learnt not to give up engaging with health care professionals if you are passionate about making a positive change in our health sector because eventually you will be listened to. I have been able to further develop my communication skills during this project because I have had to engage with healthcare professionals in my community either verbally or through written communication such as email.
It is vital that children and young people are listened to by key decision makers across all sectors because they are the next generation and will benefit from the decisions that are made by these leaders now for years to come. Children and young people are preparing organisations for the future and I feel that this NHS England youth forum group have certainly made sure that leaders make these decisions so the NHS for young people is sustained for the future. We have to remember that the NHS has been going for over 70 years and is of course unique to the United Kingdom, and children and young people are at its heart.
Being a member of the NHS England Youth Forum has opened so many different doors and opportunities for me and has led to me joining other youth advisory panels such as for the Sport and Recreation Alliance. The voice of children and young people is key to any organisation as they have to remember that we are the next generation who are going to potentially front the organisation, so we have to be heard today to have any impact on their current objectives. There are now many children and young people across England who are incredibly passionate about getting themselves and others heard which is so awesome to see and has continued to grow since 2018.
I was to give any advice to future members of youth panels, especially the NHS England Youth Forum, it would be to not give up when you are either speaking to or trying to engage with key decision makers in order to achieve your objectives. In the end they will stand up and listen to you whether that is at local, regional or national level, and it will happen I can promise you that. I would also advise that you use your status as a member of the Youth Forum because this will give you the extra power to engage with professionals at all levels.
I would like to end by piece and record my thanks to the British Youth Council, NHS England, Kath Evans who was instrumental in the creation of the youth forum at NHS England back in 2014, Luci O’Reilly, Zoe Cumberland, Leon Hill, Maria Marlow, Saarah Bokhari, Nagina Javid, and last but not least Olivia Butterworth at NHS England for all your incredible work in ensuring the continued success of the NHS England Youth Forum.
Across the UK there is a fantastic youth social action network, this network can be in a variety of forms but I have personally experienced this in a number of different settings.
I have been a member of the NHS England Youth Forum which is an awesome network for making positive change from the point of view of young people who let’s face it are going to be using the NHS for years to come.
The NHS England Youth Forum has been able to positively make a difference in a number of different ways over the 12 to 18 months, through 3 campaigns ‘Share your NHS Story’; ‘Peer Support’ & ‘Educating the Educators’.
For myself, the ‘Share your NHS Story’ campaign has had the most impact within my local area because I have been able to influence positive change by encouraging young people to speak out about there NHS Story if they have one & have felt confident enough to share it with there peer group.
I have also been able to see a positive change in the way that young people are listened to by key decision makers not just within my home town of Hereford but also now on a national level through my work with the NHS England Youth Forum & Youth Advisory Panel at the Sport & Recreation Alliance.
When I launched The Young Person’s Network in 2017 my vision was to enable all children & young people in Herefordshire to be heard if they are aged between 11-18 and have a disability or additional need. 2 years on I think it is safe to say that decision makers in my county are effectively listening to marginalised young people.
I know this is happening is a positive way because my network managed to get 2 pavements lowered in a rural area of the county for a young person who is a wheelchair user and wanted to go out independently with friends.
She wasn’t able to before this change because of the lack of dropped kerbs in her local town so I was contacted about this issue and then liaised with key decision makers to influence this much needed change.
More recently I have worked with a group of young people to highlight the lack of dropped kerbs for those who are either in wheelchairs or have mobility issues. After months of high profiled campaigning, we have now had such an impact on key decision makers that more dropped kerbs are going to be added to roads where they are needed in Herefordshire.
To conclude: without young people speaking out and being heard by people in power across a number of organisations locally, regionally & nationally we wouldn’t have made a positive impact on the lives of generations to come, this is why since getting involved with the NHS England Youth Forum & SRA Youth Advisory Panel I have developed a serious passion for youth social action in the UK. Don’t be afraid to speak out & be heard.
In October 2018 the British Youth Council worked with the NHS to obtain the thoughts and opinions of young people. Consultations from Royal College of Paediatrics and Child Health, Association for Young People’s Health and the NHS Youth Forum gathered the views of over 300 young people, including those who are seldom heard.
During these consultations, young people said that they wanted:
- Improvements to mental health support
- Children and young people friendly services
- Skills to manage their own health
- Improved transition
- Their voice to be listened to
On the 7th January the NHS launched it’s Long Term Plan. This lays out a blueprint for NHS services across the country for the next 10 years. In the plan, the NHS Youth Forum are delighted to see that children and young people’s services have been recognised as priority areas for the NHS and there are significant developments in services from neonatal to young adult (0-25).
“Children and young people represent a third of our country. Their health and wellbeing will determine our future. Recent years have seen improvements in certain services which have been singled out for action, but a mixed picture overall. Now, over the next five and ten years we need to build on that and broaden our focus”.
– NHS Long Term Plan 2019
Here are some of the key areas we’re particularly pleased to see within this plan:
Increased funding for children and young people’s mental health services
Over the next 5 years, the NHS are investing in mental health services for children and young people, including eating disorder services and embedded support in schools and colleges. They will also be developing a new approach to service delivery by extending current service models for 0-25 year olds.
Beth, a member of the NHS Youth Forum responded: “[The Plan] shows a good insight into the requirements of mental health services for children particularly with providing good long-term support, school-based services and follow up support for children who present with a mental health crisis. From the point of view of somebody working in children’s nursing this long term input is desperately needed as many children and young people present to A&E or general paediatric wards multiple times in crisis and it is an inappropriate environment for distressed and vulnerable CYPs.”
Learning disability and autism
Beth, a member of the NHS Youth Forum also said: “There are currently incredible pressures facing CAMHS services and services for children with learning disabilities and/or autism within the NHS. It is very welcome to see a particular focus on these groups of vulnerable young people. People with learning disabilities/autism face greater health inequalities and a shortened life expectancy and so to improve services such as health screening and community care for CYPs will lead to long-term sustainable change for these CYPs as they become adults, hopefully reducing inequalities in later life.”
Children and young people with cancer
Tom, a member of the NHS Youth Forum commented “The plan highlights a change in the way cancer treatment will be done with all children to allow for greater personalised care and a more comprehensive diagnosis, but also being able to have CAR-T cancer therapy in the UK without having to travel to Europe or America. This allows for children and young people in this especially vulnerable state to be treated effectively in an environment they feel safe in.” – Tom, NHS Youth Forum member
Redesigning children and young people’s services
In the new plan, the NHS has committed to creating models of care that are age appropriate, closer to home and bring together physical and mental health services, as well as improved quality of care for those with long term conditions. They have also pledged to create a Children and Young People’s Transformation Programme which we’re excited to see develop.
“A key message from stakeholders during the development of the Long Term Plan was that the needs of children are diverse, complex and need a higher profile at a national level. We will therefore create a Children and Young People’s Transformation Programme which will, in conjunction with the Maternity Transformation Programme, oversee the delivery of the children and young people’s commitments in this Plan” – NHS Long Term Plan
By 2028, the NHS aim to improve young people’s experiences of transition by developing services for young people that offer a more holistic approach; “person-centred and age appropriate care for mental and physical health needs, rather than an arbitrary transition to adult services based on age not need.”3.47, NHS Long Term Plan
Jacob, a member of the NHS Youth Forum said: “I absolutely love the idea of moving to “young people services”(0-25). It helps with transition and allows for more appropriate patient centred care for that individual young person – treatment location could then be based on their needs rather than their age. This is something I’m glad is in there as we want to make something like this at my trust.”
Development of Youth Volunteering
We are delighted to see that the NHS is continuing to invest in volunteering, particularly for young people. NHS organisations will be encouraged to give greater access for younger volunteers through programmes such as #iwill and an increased focus on programmes in deprived areas, and for those with mental health issues, learning disabilities and autism.
Final thoughts
The plan certainly acknowledges the challenges facing the health of children and young people and overall the NHS Youth Forum feels positive about the NHS’s plan for the future. We are, however, keen to ensure that the voices of children and young people are embedded within further service development.
Amy F, who was formerly part of the NHS Youth Forum said: “There are many areas to improve and develop and therefore to make these changes meaningful, it would be positive to see ongoing stakeholder contribution. For example, many service users have a wealth of knowledge and experiences that can contribute to such a positive change and highlight the areas of good practice alongside those areas that could be changed. It would be exciting to see all local services engaging with service users (including children and young people) and these conversations to contribute to the commissioning of our future health service.”
Amy H, a member of the NHS Youth Forum said: “The plan inspires a structured, cultural and sociological approach of change to health and social care which creates an element of hope that we are on the right path in tackling some major fundamental health issues. It also enables a drive in creating a healthy society and a sustainable NHS that can be a beacon of high-quality care, and demonstrate what compassionate care really means across the world”