At Joshua’s first Special School, they did not have a school nurse on site and the impact upon us, as a family, was immense: it meant that when Joshua had seizures and required his emergency medication, although they had members of staff trained to administer it, they did not want Joshua on the premises for 48 hours afterwards. Midazolam can impact upon breathing – although it never has been a problem for Joshua – so he was either sent by ambulance to A&E or I received a phone call, to go and collect him and to keep him at home for the next two days. As a working mother, neither were convenient and neither gave me faith in their ability to cope with Joshua’s epilepsy.
So in January 2011, we went to a tribunal to demand that Joshua was accepted into his current school, in a neighbouring local authority area, where school nurses were present. We were successful at the tribunal and it was with huge relief that in March 2011, Joshua moved schools, even though it meant that we lost his convenient overnight residence, the need for a school nurse was greater than our need for respite.Now 8 years later, this school nursing service is under threat due to the provider wanting to adopt ” a new model” for two special schools and we, as a Governing Body, are resisting the change as a negative development and not even one that, in the long run, will save NHS any money. From a perspective, the removal of the school nurse will have a range of impacts:
- Just knowing that Joshua’s school has a full time , trained nurse on site gives me real confidence to send Joshua to school when perhaps ,he has had seizures in the morning before school. Without their presence, his attendance would undoubtedly be lower as if there was even the slightest doubt that he might suffer seizures later in the day, then I would prefer to keep him under my nose as the impact of an A&E admission is much more disruptive than a planned day at home. After his brain surgery, Joshua would stay awake for 48 hours after his seizures which was damaging my health too. I was encouraged at the time, by his teacher to send him to school in this commatosed state, so that they could take care of him and I had a chance to recover. She reassured me that he would be safe in their care, as they were trained staff with the back up of a qualified nurse, which was probably safer than a sleep deprived mother at home.
- The staff, without the reassurance of a school nursing team, would inevitably err on the cautious side – rightly so too. So if in doubt, 999 would be called for ill pupils and so the ambulance and paramedic callouts would be inevitably higher for the school, whereas they are kept to a minimum at present. This must be a very expensive resource as well as being a terrifying experience for SEN pupils and their parents.
- Epilepsy changes all of the time and so it has been invaluable to have, during Joshua’s 8 years at this school, a consistent presence of the same school nurse who knows how his seizures present themselves. She is able to identify when something is new or unusual for him and while his class teams have changed most years, the school nurse has been a constant force in his life. It is typically when his seizures take on a new guise that she has called either me or 999 to be on the safe side.
- When Joshua’s seizures were at their worst and at their most frequent, he had full tonic clonic seizures, which would send him flying backwards across a room as though he had been shoved. As he grew taller, he inevitably was at greater risk of hitting furniture on his way down. Despite wearing his epilepsy helmet, Joshua suffered many head injuries at this bad time and the school nurse was always able to treat them and we only had to go to A&E, when she thought he may need stitches or an X-Ray. Even children’s A&E is a stressful experience for a child with special needs, when they are in pain, and so if those visits can be minimised, that has to be a good thing for all concerned.
- The school nursing team have not just been there for Joshua when he has had seizures, but they were really helpful when he developed what we thought was a pressure sore and when they suspected impetigo too. Joshua is more vulnerable to seizures when he gets too hot, and so they are regularly being called upon to check his temperature when he is coming down with something and because I have given my permission, they can administer paracetamol, which can keep a potential bigger problem at bay. So as well as dealing with emergencies, for us, they have been invaluable in helping with preventative care too.
These are just the benefits that the nursing team have had for Joshua over the last 8 years, I know that they provide equally beneficial healthcare to many other pupils in the school, services such as tube feeding, that enable children to spend more time in school than they would otherwise be able to.
It is for these reasons that I am resisting this change to a current system , that works really well, as it simply does not make sense to me. Even the argument that this could be a cost saving measure, does not stack up. I know that the Headteacher and Governing Body are against the change, but perhaps they have not felt the benefits of the current system as personally as I have. We have been in a situation without a school nurse and we know first hand, how disruptive and frightening that was and it would be a massive backwards step if Joshua’s current school were forced into losing its full time nursing team. Even though Joshua only has one more year left at this school, I feel so strongly about this proposed change, that I will fight it with all my might.