Issue 13: Spring/Summer 2024
Children and Young People, Education for children and young people
A supportive path for children with SEND
Special Educational Needs and/or Disabilities (SEND) can affect a child or young person’s ability to access education and reach their potential.
This can present in many forms and have a negative impact on their social, emotional and learning development. Areas of need and levels of complexity can change over time as the child grows and their circumstances change. Families and educators often notice a change in behaviour, communicating that there is potentially an undiagnosed, unmet or developing need. Social relationships, ability to communicate and their achievement as well as self-esteem, confidence and self-worth can all be affected causing distress for the child and those around them.
At the end of 2023, it was reported that 15,522 children in England had been on an NHS waiting list for developmental assessments for over one year (NHS England). The MCF is now able to provide funding for developmental and educational assessments allowing children to receive much needed support from education authorities and other supporting agencies.
Zoe was concerned that some of her son Archie’s behaviours were not what she expected for his age. Zoe noticed he was demonstrating frequent changes in mood and he found it difficult to communicate his thoughts and feelings to others. She was also observing challenging behaviours and was worried they might indicate a neurodiverse need such as Autism or Attention Deficit Hyperactivity Disorder (ADHD). Zoe believes that Archie experienced trauma, along with the rest of the family, when they found out that his sister would be born with complex medical needs.
In the autumn of 2020, I learned during a 20-week scan that my daughter, Darcey had a heart condition. She required two open-heart surgeries – one which she had at eight weeks old – so she spent the first ten weeks of her life in hospital. At this point, Archie had only met her once, and at the same time he had basically lost me for ten weeks because I spent so much of this time at the hospital with Darcey.
After the ten-week period, the doctors said there wasn’t much more they could do for Darcey, so Zoe and her partner, Darren, not knowing how much time she would have left, were keen to bring her home to have Christmas as a family, make happy memories and provide palliative care in a comfortable environment. Meanwhile, Archie’s already complex needs presented as more and more challenging as time went on. His parents decided they urgently needed to get him help and explore how they could support Archie ensuring he was able to communicate his needs, thoughts and feelings.
When I first looked into support for Archie, the NHS waiting list for specialist assessments was huge and exceeding a year and a half, just to see the OT (Occupational Therapist) and a paediatrician. We couldn’t afford to pay for private help because I couldn’t go back to work after maternity leave due to everything going on at home with Darcey, so we had gone from two salaries to one. On top of all of this we were dealing with mould, hot water issues, and the cost of living crisis – we couldn’t afford anything and Archie was getting worse, so I made a desperate phone call to the MCF for help.
Following this request, we were able to fund an OT assessment for Archie, who attended his appointment within just two months.
Another parent whose child is autistic recommended a private OT to me who sounded perfect for Archie, as she could observe him at school and had a background in palliative care so would be understanding of his situation at home too. I asked if the MCF could fund this and thankfully they did, which really helped us to better understand Archie’s behavioural patterns and specific needs.
One significant barrier that Zoe and her partner noticed is the increasing thresholds and timescales for accessing NHS support for children and young people; there are so many children waiting for help, even initial appointments can mean a wait of a few weeks. Often the child or young person has to reach a crisis point in order to get the medical support, treatment, intervention or assessment that they so desperately need. This leaves children like Archie and their families distressed, frustrated and struggling. There is little support available and this can be very isolating. Worse still, we are seeing cases where children are excluded from education for a period of time or even permanently.
We are keen to help children and grandchildren within the Freemasonry community access the appropriate assessments that are identified and supported by the school, or other professionals. We believe that the early help and support that the MCF can facilitate with these grants can make a difference and ensure that children and families have a better chance to thrive.
We’re still on the journey to getting full support for Archie. It’s a long road but the findings from the appointments and assessments that were paid for by the MCF really helped us get to this point. Another thing that really stands out to me is the holiday they paid for us to go on as a family; it felt like everything came together that week – Darcey had been so up and down before that but she was perfect when we were away. Making memories is so important for palliative care, and there’s no doubt we wouldn’t have been able to go on this unforgettable trip without the MCF’s support.
Darcey remains under palliative care, and Zoe and Darren live day by day, providing the most comfortable and supportive environment they can for their children.
In addition to this service, we offer mental health support to children and young people aged five to 15 years old. This service is delivered through an experienced and independent provider and provides access to fully trained and qualified mental health practitioners, ensuring that they receive the highest quality of care.
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