Real life SEND experiences

Real life stories of how the SEND improvement programme is helping to make a difference for the lives of children and young people in Nottinghamshire.

Anna’s story

Parent Anna Harrison shares her experience as part of a co-production group:

My daughter and I met with Debbie as part of a co-production group for the Minds of all kinds neurodevelopmental website.

As part of the discussions for the website, we mentioned to Debbie that my daughter and I used to attend a parent run ‘supergirls’ youth group once a month. It’s for autistic girls, to have a safe quiet space to meet with other autistic girls and get to know others who are going through similar experiences to themselves, helping them to feel less isolated.

Unfortunately, this had to be discontinued at the beginning of covid lock-down. Debbie listened to my daughter’s view about how much she got from this group, and how much she missed her friends. Debbie supported us in getting the group restarted and facilitated meetings with the local young people’s centre to support us in getting a suitable meeting place.

The group has now been meeting again monthly since December 2023 and it’s going really well. Some of the ‘original’ supergirls have come back, as well as new ones joining us. For my daughter, it helps her mental health and makes her feel less alone. They talk about her struggles with school attendance, friends, and activities, and share what helps them and enables them to do things. The girls range from seven to 17 at the moment, so it’s great for the younger girls to meet older girls to look up to. As parents, it’s also helped up build an amazing support network!

The participation in co-production has really enabled us to regain this much needed resource, which is a great support not only for us as a family but for many other families in the area too.

Sleep story

Here is the experience of a parent getting support for her daughter:

My 8-year-old daughter has never slept. It isn’t unusual for her to still be awake gone midnight and then wake up three or four times throughout the night.

She was diagnosed with autism last year. When she was diagnosed she was given melatonin. This hasn’t helped at all. She takes it properly every night, and every night she’s still awake until late.

I am exhausted. I used to work as a carer for the elderly, but this isn’t possible now. I do have mental health issues and I don’t think that the sleepless nights help. I haven’t accessed any support other than the melatonin for her sleep issues, but I really need something.

I have been working with the team developing the sleep pathway to share my experiences and what I think the support should look like. I am really excited to see what comes of this work and am looking forward to a good nights sleep!

My swimming story

Mason needs a ventilator to breathe. He was supported to attend his first school swimming lesson with the rest of his class at Carlton Forum Leisure Centre recently.

This followed a successful period of hydrotherapy as part of post-surgery rehab. This is the first time a ventilated child has accessed either hydrotherapy or mainstream swimming in Nottinghamshire and it was made possible through joint working between:

NHS physiotherapy
Long term ventilation nurse and physiotherapists
Nottinghamshire County Council manual handling advisors
Nottinghamshire County Council’s school swimming team
Carlton Forum Leisure Centre
Apollo Healthcare (continuing care funded staff)
Head teacher, SENCO and 2 teaching assistants from Mason’s school
Advice from a Paediatrician, Respiratory Consultant and the Spinal Injuries Unit.

It's a great place to be with your friends. It’s much better than hydro. We enjoy racing. - Mason

Max's DJ story

Hiya my name is Max. I have been diagnosed with autism, dyspraxia, inattentive ADHD and hyper-mobility. I found school really hard and never mixed a lot with people growing up, and mum referred to me as being very quiet but happy.

I went to a mainstream primary school but had a lot of additional help and got an EHCP in year 6 and then to a specialist school in year 8 after being at home for almost a year due to struggling in mainstream secondary school.

I had started self-harming and my mood was incredibly low every day and found day to day tasks really difficult and hated socialising.

We grew up with not a lot of money either. My mum was on her own with me and my autistic and ADHD brother and my younger brother, with my dad earning minimum wage to pay the basic bills.

Since I was three years old I have always wanted to be a DJ after watching Kevin and Perry, but financially this is unachievable due to the costs of the courses and travelling etc. But thanks to the short breaks service we were allocated each month, I started FourFour DJ Academy aged 13 to learn the skills of being a DJ.

In about eight months I received my certificate to say I knew everything I could be taught and I was qualified to DJ, so then I learned after that to produce music myself again out the short breaks service money. I am still doing production but I like to produce music with my tutor still.

I have has several songs signed by a small label and they are available on Spotify, Amazon music and Deezer etc for streaming and purchasing and another one or two coming out in the future.

I played at Gloworm festival for 10 minutes in August 2022 with FourFour DJ Academy, they thought I was that great they invited me back for 4 hour slots on the Saturday and Sunday of August 2022 sponsored by Kinetic Sand.

Now I am almost 18 and looking forward to playing in clubs and now with a little help be able to travel round the world a DJ as I have a lot of confidence in my mixing skills. Many bigger artists have said I am quick and exceptionally good with my technical skills.

I have DJed with Phillip George, who had three top 10 singles that were major big tracks in the UK, who also said I would go far. I have helped FourFour DJ academy raise money for charity by my mixing skills in a charity event they hosted.

All of this has happened in my life due to the amazing funding from the short breaks service at Nottinghamshire County Council. I am so thankful and appreciate all the funding and help and support. I would have found employment so hard given all my needs and disabilities but DJing is a massive passion so now I have these skills me and my family have hope for my future. Yes I will still require help and support but to be able to work and enjoy my life is something else.

I thank everyone so much at short breaks and Nottinghamshire County Council for helping me achieve my dreams and give me a future.

My employment story

The latest cohort of Project SEARCH interns completed their graduation following work placements at King’s Mill and Mansfield Community Hospitals recently.

DFN Project SEARCH is a one-year transition to work programme for young adults with a learning disability or autism spectrum conditions, or both. They work hard to challenge and change cultures, demonstrating how young people with a learning disability can enrich the workforce, bring incredible skills and talent, encourage greater diversity, and meet a real business need.

Interns on the programme participate in three job rotations to explore a variety of career paths within the NHS such as hospitality, business admin, domestic services, pathology and more.

Bawithiran Raveendran was one of the graduates and he now has a job in the portering team:

I was very nervous at the start, but I have learnt so many things I didn't think I was capable of doing. I have learnt more knowledge to be able to help people and have become more confident with my social skills and talking to people.

And Nathan Florence completed the programme three years ago and is now mentoring other students. He said:

It was brilliant, it helped me to learn new skills to get a job and I got a job with Medirest on the windows. It helped me to become more confident.

Jackie Wix, Business Liaison for Project SEARCH, said:

It has been an honour to see the progress the interns make both in work and general life skills over the last two years, and to watch them progress to either work or volunteering. I would like to say a huge thank you to all the departments that have been involved and been so welcoming and supportive of the interns. It is heart-warming to know there are so many people within the hospital who have offered their help, time, and support to these young people. I am excited to see what this next year brings when our next cohort of interns join the Trust.

Chloe's story

Following a request for assessment for an education, health and care plan, Chloe and her mum met with the council’s SEND education pathway officer.

The family were seeking an assessment to help Chloe get back into education after her GCSEs in a school or college, following two years of being educated at home. Initially the family felt that alternative provision would be the only option because it would be a smaller setting.

They were keen to get Chloe back into education and were really struggling because they didn’t know what was available or where to turn for help.

The SEND pathway officer worked closely with the family to understand their needs and challenges as well as to understand if there were options available outside of an assessment that would deliver Chloe’s education needs and the family’s needs for support.

With the support of Inspire college and the local authority, the family were able to find a suitable course and environment to meet Chloe’s needs that will support her to achieve her ambitions and to prepare her for work later on.

Chloe's mum said:

We were in a really stressful situation. You’ve guided us in the right direction, been very supportive, listened to our needs and it was a relief that someone was listening.

I’m glad we’ve found the course because I didn’t realise that it was available. It sounded like a good course to support my child’s confidence and social skills before going to work. I feel very positive, I wasn’t forcing the decision on to my child, I wanted her to make the choice about what happened next.

We’re hopeful that the course will be a good change and are ready for a fresh start. If it had not been for yourself pointing me in the right direction I don’t know where we would have ended up.”

Our review story

My son was given an education, health and care plan when he moved from primary to secondary school a few years ago. On our review it became obvious a mainstream school environment would be detrimental to his mental health, would be too overwhelming and would not meet his needs.

He was placed in an amazing school that has really taken the time to understand his needs and adapt the environment so that his focus is less on sensory distractions around him and more on the learning in front of him. My son has come on leaps and bounds at his school and has made incredible progress as a result of this approach. While he still needs support, he is much more comfortable and confident.

The school latches on to any of his interests and apply that to his learning where ever possible. They also allow him to chase down information that he finds interesting. My son has a keen interest in US Presidents and his knowledge of history surrounding them is phenomenal. The school give him the opportunity to chase his interests through every subject and keep him engaged.

The staff at his school likewise have read and understand his EHCP very well and are incredible assets. Every year when we have our reviews, I get together with key staff at the school and we talk about not only how he is doing, but what we think we could encourage him to do next and build that into the plan. We talk about what is realistic and I voice any concerns I have, but the plan is adapted every year to set out plans for him for the coming year. That being said if something is too challenging or too much for him, we zoom in and put steps in place to transition him into those plans more slowly.

As a result of him finding a passion in American history we have had some lasting memories built while encouraging and perusing those interests. He is so engaged with and passionate about learning and it is amazing to see.

Tom's 'superpower moment'

*Tom is a young person with Autism and ADHD who wanted to know more about his diagnosis. A member of the Healthy Family Team at Nottinghamshire Healthcare Trust worked with Tom and discussed what his diagnosis meant, using the CAMHS booklet ‘what is autism’.

The practitioner created a safe space for Tom to explore his diagnosis and work with him on how he could adapt to his surroundings and consider his positives and strengths.

This helped Tom to identify his ‘superpower moment’ – something he could do really well. For Tom, this was his ability to work out train timetables. The Healthy Family Team member also worked with Tom around his anger and anxiety.

Tom is now attending the mainstream part of his school and has been able to work on his communications with other pupils.
*Tom’s name has been changed to protect his identity.

The Healthy Family Team

The Healthy Family Team is made up of specialist public health practitioners (health visitors and school nurses). They provide support to children and young people from 0 – 19 years and work alongside GP practices, midwifery services, early years settings, family hubs (children centres) schools, social care and other services.

Routine reviews consist of antenatal contact, birth visits (up to 14 days), 6 to 8 week review, 1 year review and 2 to 2.5-year review. Parents and carers receive information at key points during their child’s academic journey and there is also the offer of digital reviews at year 9 in schools along with other interventions that support young people in education.

The Healthy Family Team has an advice line operating Monday to Friday (9am to 4.30pm): 0300 123 5436.

Callum's story

Callum had done some initial work with the i-work team around searching for compatible jobs and considering suitability for employment but still felt that he wanted to seek some experience in a supportive environment like the one provided at Brooke Farm.

Callum also stated that, along with experience, he felt he needed some level of self-confidence which was another driving force in pursuing the opportunity Brooke Farm provided.

During Callum’s induction onto the hub, he spent a few weeks sampling the different areas of work training offered. He initially decided to train in the greenhouse before deciding that working in a food environment was more suited to what he would like to do long-term. So, he then began practicing his skills in the café and farm shop. With support and encouragement from the Brooke Farm team, Callum immediately began to flourish – developing skills and confidence in the real-life practical work environment and soon became recognised for his excellent customer service.

Callum embraced the employability skills opportunities at Brooke Farm and completed the onsite English course run by Inspire, a maths course on financial literacy also by Inspire, and an in-house accredited food hygiene course.

Earlier this year, Callum felt his confidence and skills had improved enough to apply for ajob with Nottinghamshire County Council at Ashfield Day Service working as a Kitchen Assistant. The i-work team then worked with Callum again to support and prepare him for his interview for which he was successful.

Before he finished, Callum said:

I came to Brooke Farm for more experience and what I found was much more than that. The staff have been very supportive in helping me achieve many targets, like getting my Level 1 Food Hygiene Certificate. I am very grateful for the role Brooke Farm has played in my development and I look forward to my new job."

Luke Bragg, Brooke Farm Employment Development Worker, said:

Callum came to us with all the drive and determination to accomplish his goals – he simply needed the backing and belief of the staff to help him find the confidence to excel. Whilst with us he has not shied away from any challenges or training opportunities, and he has approached everything head-on with a can-do attitude. He has truly been a pleasure to work with and the entire team wish him nothing but success in his new role."

Settling into his new job as a Kitchen Assistant, Callum reflects:

Since starting my job at Ashfield Day Service I have been supported by the i-work team. They are supporting me to complete my training and getting me used to my new job role. I am really enjoying it and itis really satisfying that I am being paid for doing something that I enjoy. I have enjoyed meeting new people in work and am getting used to my work routine. I am building my confidence, feeling more independent and learning new skills."

Jak's bedroom story

Jak, aged 17, lives with mum Kim and dad Chris in Kirkby in Ashfield.

When Jak’s health condition deteriorated and using the stairs had become challenging and unsafe, his family contacted the integrated children’s disability service’s occupational therapy team for some support.

An assessment by a therapist found Jak was facing a range of difficulties, including accessing the upstairs bathroom.This led to a recommendation for home adaptations tohelp manage his increasing needs and that a ground floor extension be built.

This would provide access to bedroom and wet-room facilities to enable Jak to 'live safely and more independently' at home through his teenage years and into adulthood. For this type of adaptation, referrals can be madeto the local housing authority for a disabled facilities grant (DFG). A grant was approved towards funding the ground floor extension leaving the family with a significant contribution to make themselves. This seemed like a daunting task andnot something the family could self-fund.

Nottinghamshire County Council’s disabled facilities grant caseworker, Sarah, supported the family in dealing with the different organisations involved, requesting regular updates about the progress and to help with funding.

Because Jak is a Mansfield Town FC (Stags) fanatic, Sarah encouraged the family to approach the club about a charity fundraiser for Jak. The club and supporters raised a terrific amount, which, along with help from some incredible friends, family and the local community, meant that the family was able to raise the amount needed.

The family met with the builders, who talked them through the process and what to expect.The extension took 12 weeks to complete with little disruption to the family.The family was delighted with the chosen contractors and incredibly happy with how the finished results meet Jak’s needs.

Jak said:

I love my room, it’s a good place to chill out and it’s safe for me to use my bedroom and bathroom alone sometimes. I’ve definitely got the best room in the house! I can use my chair really easy, especially when I’m playing darts or Xbox, it’s also nice and warm."

Nottinghamshire County Council’s DFG caseworker, Sarah, said:

It was a pleasure working with the family, they were so receptive to the DFG process. It has been a joy to see the independence the space has created for Jak."

The role of a SENCO

Patricia Padley, a Special Educational Needs Co-ordinator (SENCO) at Alderman White School in Bramcote, offers an insight into her role:

The main part of my role is being an advocate for the students. Some of the students respond really well to the support they have and that’s really rewarding.

I’ve been a SENCO for a year now, but I have a 25 year background in teaching and most recently I was the head of department for English. In my previous role, I really enjoyed supporting children with additional needs by working with them in smaller groups or tailoring support for them in other ways. I was keen to do more work with children with additional needs, so I decided to complete my SENCO award, which is the masters-level qualification needed to become a SENCO.

As a SENCO, I do still have a small amount of time teaching, but the majority of my role is being an advocate for the 128 students on our register who need SEND support. I regularly meet with parents and key workers to make sure we have the right support in place for students. I find that little things can make a massive difference, whether that’s letting a student wear a polo shirt instead of the usual uniform shirt or spending an extra five minutes with a student who needs support.

We’re a really inclusive school at Alderman White and we will always do what we can to support our students, but it can sometimes be difficult to manage expectations. We can let students have some time out of regular lessons if things get overwhelming and they need a quiet space to support regulation. This is always managed and monitored to get the right balance between educational progress and wellbeing. Students learn best when they feel safe and happy.

Our staff training is delivered with the view that strategies that support students with SEND are strategies that support all students. Quality First Teaching (QFT) in the classroom is the most inclusive and effective approach. Using visuals, having consistent routines and offering ‘scaffolding’ (additional support when it is needed and removing this to improve independence) are examples of QFT that really help students.

One challenge we have is that space is limited. This is a particular issue during exam time, where we need to find separate quiet spaces for some students and, despite utilising all our school offices and other rooms, it is becoming more and more difficult to accommodate.

A big part of my role is around Education and Healthcare Plan (EHCP) reviews. This involves information-gathering with staff, find out students’ views and meeting parents to discuss the support in place, considering what else a student may need and writing up the reviews.

I also write the bids for the school to receive additional funding for SEND students, which is dependent on the individual needs of each child. This funding goes towards the cost of our 15 teaching assistants.

An increasing part of my role is around anxiety-related non-attendance, as the social and emotional health of students is a SEND need. My role involves working with parents, carers and students as well as working with other professionals including educational psychologists, specialist advisory teachers, social workers and alternative providers to put bespoke provision in place.

I also do a lot of work around transitions, as moving from primary to secondary school can be really overwhelming for some students. We can set up extra visits to help put them at ease and I really enjoy meeting the students one to one and forming relationships.

The main part of my role is being an advocate for the students. I work with the school staff to raise awareness about some of the difficulties they are facing. Otherwise, some of them would mask them and try and muddle along. Once you know the detail about each student’s circumstances, it really increases your empathy and gives you a different perspective. For example, we recently had trauma informed practice training, which I found really enlightening in understanding the reasons why some students may be struggling to attend school.

A SENCO is like a triaging role. We look at each child individually and think about what support they need, whether that’s mental health support, help to fill gaps in learning, sensory support or just talking to them to check in every so often. I think it’s reassuring for parents to have a point of contact and know that someone is accountable for SEND students.

I’m proud to work with staff who have a shared ethos that SEND education should be about equity. There is recognition that we sometimes need to be creative in a mainstream education system that tries to push square pegs into round holes! It’s incredibly rewarding to see the transformative impact that reasonable adjustments can make to a child’s experience of school."

Emily's story

Emily had a placement at Nottingham City Hospital for one year as part of Project SEARCH with Nottingham College. Before that, she studied work skills at Derby College for one year and catering at Nottingham College for two years. As a result of her continuous hard work and support from her colleagues, Emily gained permanent paid employment as a Food Service Assistant at the hospital. She has now been working in this job for just over a year.

Emily’s parents say they are both pleased for her. They feel happy that she is working in a safe and secure environment. Emily said:

Although I was fairly outgoing, I have always lacked confidence in myself, but the supported internship has enabled me to build my confidence by meeting and working with lots of different people.

The internship allowed me to get to see what the hospital was all about and I got a hands-on training which was not just classroom based. I was allowed to shadow other staff members and I really enjoyed my year at the hospital, everyone was so helpful. I have a mentor which is great so I can ask her about things if I need to.

Whilst working within the hospital I have been able to use the skills I learnt at college, gain new skills and have now been offered a permanent job with the NHS.

I have thoroughly loved every minute working at the hospital and always feel safe and supported.”

Project Search offers one-year internship programmes for over 18s based at Queen’s Medical Centre, City Hospital and Sherwood Forest Hospitals Trust. Young people can apply through Nottingham College or West Notts College.