We have just been victorious in our third giant battle against the powers-that-be, and I wanted to share our experience so that it might help empower others that might need some help or encouragement when battling with their own challenges.
Stepping back in time, our first battle was when Jenson, aged two, required psychological interventions to treat his severe oral aversion. We challenged our local health authority to provide funding for a service that was outside of the usual NHS remit. We encountered months of contesting and campaigning, and endured a thoroughly miserable time, during which Jenson’s intake had reduced to a dangerously low volume of his prescribed high-calorie milk, and he was refusing all solids. Dancing dangerously with dehydration, and a week before the surgery date for insertion of a feeding tube, we were victorious in securing the service we required, which made a life-changing difference to our whole family, and to Jenson’s future.
Our second triumph was securing a place at Jenson’s specialist school at the age of three. After looking closely at all three special needs schools in our area, we were absolutely resolute that one of these was the best school for him, and the only school that could fully meet his needs. The school is run by a charity and provides everything under one roof, including orthotics, physiotherapy, speech and language, paediatric consultancy, horse-riding and hydrotherapy. The local authority, however, wanted to send him to their choice of school, which being a local authority school, was ‘lessening the burden on the public purse’. After a lengthy battle, we were successful at securing a place for Jenson at our number one choice, where he has just entered his second year, and is thriving.
This brings me onto our latest battle, which we have just conquered. We have finally secured transport for Jenson to and from school. We were denied transport initially, on the basis that we were offered a place at this school on the agreement that we provide the transport ourselves. I originally bit the local authority’s hand off with delight at having won a place at the school for Jenson, but one year later, and being back at work after a second baby, I was really feeling the pressure! Two hours per day of driving backwards and forwards was really encroaching on my professional work and my ability to care for my children. I decided to investigate the legalities of the situation and thereby I established that we are legally entitled to transport. As I delved deeper into the laws and codes of practice and the specifics of the situation were unravelling, it was evident that we were weaved into an ever-increasing web of loop-holes and ambiguities. Still, I battled through and 12 months on was successful.
It is fair to say that I have spent a ridiculous amount of time on my computer while battling through these ordeals: Google, Facebook support groups, contacting people that I knew, hassling people that I did not know! I pestered the authorities – NHS and Council, gently at first; I ascertained who my allies were and scoped out my adversaries. I wrote letters of complaint, I submitted appeals; I even put in Freedom of Information requests, just to raise my profile as the ‘bothersome mother’.
I trawled through government statutory framework documents, local authority policies, and codes of practice. I quoted The Education Act 1996, and even referenced a High Court precedent regarding qualification of the term ‘public expenditure’ in regard to the overlap of education with healthcare costs. I sent emails with ‘high importance’ flags, and I sent carbon-copies to line managers and as high as the Director of Children’s Services and NHS Chief Executives.
I spent hours on the telephone to SEN agencies, children’s disability charities and legal advisors, appealing for advice and expertise knowledge. I calculated and submitted NHS reference costs to demonstrate the benefit to the public purse of our choice of approach. (For example, in 2015/16 it cost a national average of £2,313 for endoscopic insertion of gastrostomy tube in a child and £212 for every gastroenterologist consultant-led appointment. It also costs £20 per day for the prescribed specialist feed. The alternative one–off cost to provide psychological treatment was unsurprisingly a significantly cheaper option, but to impress this point upon the powers-that-be was an unwieldy task!).
I wholeheartedly believe in our NHS and our social care system, and am proud that our country has these services at the heart of our society. If this was a politically-motivated blog then I would have an awful lot more to say about the way that our current government chooses to use national resources and prioritise it’s spending and austerity plans, but I will save that rant for another day! It is certainly true, however, that the systems embedded in our society are not always easy to navigate and without tenacity, resourcefulness and a huge dose of bloody-mindedness, it is easy to sit back and accept less than you are entitled to.
I could go on and on about the battles that we came through to get the very best and most appropriate treatment, care and education for our son. I’m sure there will be more battles to come, in the future. But for now I am content that we have done the very best for him so far in his short life.