The prognosis in December 2020 was a slow and painful death or a huge brain surgery that may or may not save my life and could last up to 18 hours with all sorts of risks and horrendous possibilities. The diagnosis came in the middle of the pandemic with my child at home whilst I attempted to home school and struggle through. I was told to write a Power of Attorney and a Will and inform social services. As a single parent to a SEND child, I had a life-threatening diagnosis, the circumstances were dismal and I would undoubtedly need help.
The impact would ripple throughout my life, my relationships, friendships, family, my personal identity, business, parenting and all the rest - of course as is often the case with a SEND child, nothing could have led me to anticipate the social injustice and discrimination that we would encounter.
It has now been 14 months since my world started ‘closing down’. My body was stopping to perform basic tasks and my inner knowing said this is gonna be big!
What I have witnessed and survived is not only sheer agony on all levels but years of deteriorating health on a par with experiencing the declining health of old age but as a 40 year old woman - all my capacities slowly deteriorating – indeed a slow and painful death.
This all simultaneously ran alongside one of the most harrowing mental ordeals a parent could imagine. Not only stuck in the middle of a pandemic, isolated with a life-threatening, deteriorating health condition, I had no provisions in place to care for my son and was systematically gaslit by my local authority. Undisputable social injustice – staggering discrimination and total systemic failure.
I’m sharing this in the context of Raising Spirit in the hope that every piece of information shared and every little step each of us can take to go up against the system and change it for the better will add value somewhere and encourage others to do the same wherever they can.
Courage is not the absence of fear, it is the ability to act in the presence of fear – Bruce Lee
Find the courage to fight for what you need
The day of my diagnosis I had received a call from Social Services – the school had referred us based on my pleas for help, I couldn’t perform basic tasks and did not know where to turn. Fast forward 3 months and no help had come. Social worker after social worker, literally hundreds of emails and phone calls and nothing.
The psychological turmoil was insane. How was my child going to be looked after? Let alone would I survive it. What would be the state of me afterwards? It was as if I was living a lie, a strange and surreal reality or was it a joke? The system was not taking me seriously!
With nowhere to turn other than the system for help, my choices were limited and due to the long-term nature of my sons’ complex special educational needs and my health the only answer was to fight for his legal right – to access appropriate care and education.
A patchwork of temporary provisions for my son with friends and relatives was hashed together as a complaint was raised. What ensued was a further 8 months of anguish and stress and continuous admin, upset and torment alongside crushing physical pain and sleep deprivation whilst I attempted to recover from eleven hours of brain surgery. Eventually, we reached Stage 3 of the Statutory Complaints Process, just short of appealing to the Local Government Ombudsman.
Almost one year after surgery, I posted to my Face Book friends: After 14 months of emotional and mental torture at the hands of a system that obstructed the well-being of a child and parent in need, I have been officially compensated with a full apology and the needs of my child finally acknowledged and met.
I had not slept a full night since December 2020 with insomnia exasperated by severe stress in relation to our circumstances which traumatised me and heavily impeded my recovery. The journey I had been exposed to was not only cruel, but pure discrimination, gas lit by the system in place to supposedly help us!
It took an MP, a charity, an advocate, a school with highly specialist therapists, our GP, a paediatric consultant, a neurosurgeon and other independent medical and educational professionals to stand against the system and insist on giving us help. Yet despite all this noise, the system did not prove fit for purpose.
My son was taken into emergency respite residential at his school whilst I was admitted for surgery. Our circumstances were seriously exasperated due to a catalogue of catastrophic systematic incompetence. A factually incorrect and highly concerning Section 17 was issued by the local authority, (now almost 5 months following the original referral) – however its main ambition was clearly to prevent my son accessing the support he needed. A second complaint had to be raised. I was being forced to repeat myself and face humiliation and extraordinary psychological stress repeatedly. At its worst, I was threatened by social services that my child would be taken from me if I could not provide for his needs at home.
An official statutory investigation was initiated by an independent body into the conduct of local authority but by July the process was delayed due to an inadequate response from key staff and managers. This meant yet further protracted rehabilitation for me.
The summer holidays arrived with no plan in place, but I had managed to find the Charity Skylarks - which began advocacy along with my local government MP insisting on support. As a two-prong attack got underway via Skylarks advocacy supporting with the legalities of the EHCP paperwork via tribunal services SENDIST together with the Independent Investigation of the Local Authority’s conduct.
The local authority was found at fault of 45 working days of inaction. However, despite the appalling conduct, the professionals involved still attempted to not uphold the findings. This forced the escalation of the complaint to another panel hearing.
In December 2021, an entire year later at Stage 3 of the corporate complaints procedure the local authority finally conceded on all counts. They were ordered to meet the needs of the child as well as provide continued evidence of improvements to the system and protocols.
Parent Blame Culture
The blame culture that is interlaced within our social services systems is disgraceful. Regardless of the needs of the child being thoroughly documented and my extensive efforts to get help we faced discrimination at every turn.
The fact I was a white educated person who could communicate my child’s needs was against me. It is assumed that people who can fight and communicate do not have any needs and are trying to swindle the system. This was despite full medical reports and evidence of being a single parent with a life-threatening health condition. It was also communicated off the record that as I had expressed a need for my son to access residential care ahead of my diagnosis (which was based on his extensive and complex needs), that I was using the ‘excuse’ of a brain tumour to handily get what I wanted!
This is the extent of the system and the discrimination that exists within it. Not only were my sons needs justification enough for the support he finally now has in place with his EHCP, but the additional impact of my health meant he was in fact at risk and no one did anything about it. Now try to imagine the plight of families and children when someone doesn’t have a voice…
If you read this far, please donate to https://www.skylarks.charity a truly incredible charity for families of SEND children. In addition, for further information about brain tumours the incredible work of https://www.thebraintumourcharity.org/ without which I would not be able to write this blog today. Finally, for parents struggling with EHCPs and the system please contact Amanda Sokell https://www.navigatingneurodiversity.life/
The Power of a Spotless Mind
