Emma tells us about the challenges of transitioning from child to adult services. You can read part one here.
It is now the month before Joshua’s 18th birthday, so we really are on the countdown to adulthood now. We have recently had a weekend with a hospital admission for seizures, which brought home some of the reality of what is to come.
In the ambulance on our way to hospital there was a debate between the paramedics over whether my 17 year old son would be treated by children’s A&E or Adults. The paramedic was under the impression that, as he was still in full time education, he would still be treated by paediatrics but there was some hesitation over whether or not they would accept him, once we arrived. Apparently for our local trust, adulthood begins at 16 and, after some debate, with Joshua on the trolley, they compromised and accepted him into Children’s A&E, but they warned me, if he was admitted onto a ward, that it would need to be an adult ward. I just wanted my son to receive urgent treatment and so I accepted their contradictory and confusing distinction.
In fact, when he was settled and we talked more, once they found out that he was still under a paediatric neurologist, as we had not yet been transferred to Adults, they relented and we were accepted by the Children’s ward. This confusion gave me an insight of what may lay ahead in our future, with just a month to go until this critical birthday. It seems that Joshua currently exists in an odd limbo-land.
I took the opportunity once on the ward, to ask the nurses something that had been bothering me for a long time. I had been told on one of our hospital stays, that there would be no facility for me to stay with Joshua once he was an adult, if he requires any overnight hospital stays. I was reassured to hear that this was scaremongering and that this was not the case. Nursing staff would need me there to reassure adult Joshua and to act as his interpreter too.
I did have a glimpse at the future though, that Children’s A&E would be preferable as, as the A&E consultant explained that there would be “fewer drunks and druggies in there!”, the prospect of which sent shivers down my spine. I was much more comfortable surrounded by murals of jungle animals and smiling children’s nurses, even though he was clearly too long for their trolleys then hospital beds on the ward.
After this hospital admission, I chased both his paediatric neurologist and his children’s epilepsy nurse, to remind them that Joshua’s birthday was fast approaching. Both have now come back to me with dates when we will be introduced to the new adult specialist in March. I have also had a telephone review with the Continence Service to discuss a handover to the adult service, when a home visit will be required and no doubt, they will try to talk us out of the current continence products that we are happy with and that we fought for, for a year.
We have recently had the review meeting for Joshua’s Education Health Care Plan, where both his current and adult social workers were present. There was a great deal of discussion about Joshua’s future respite and daycare, once he leaves education. At the end of the meeting, the Children’s social worker bid me goodbye and wished me luck, as she will never see me or Joshua again, which was a strange feeling. In the run up to adulthood, I keep getting these little nudges or reminders, so that I am forced not to ignore it.
Thankfully Joshua’s current respite provision has some flexibility to extend his stays, to assist with his transition to an adult respite provision. I think that I have finally found somewhere that I could picture Joshua enjoying, that is just 35 minutes from home and so we have time to plan his future there and to prepare him – and me – for the changeover. I will be emotional when he finally says goodbye to his current provider and even in the EHCP meeting, my only tears came when I tried to express what their service and care has meant to us as a family.
But then once that is resolved, we will have to turn our attention to the even thornier issue of how he will be occupied during the day once he leaves school at 19! Joshua does not have the capacity to go on to further studies or some form of manual employment, so it will only be about keeping him occupied and happy for the rest of his life. We will be looking to replace the role that school plays in his life currently: some reason to get up and out in the morning and somewhere where he meets and enjoys the company of his peers and caring staff, while they do fun activities. I cannot address that yet, but I know that it is on the horizon and I must not leave it until the last minute but tackle it.
School will organise “taster sessions” of some alternative providers. These are big choices that we will be making together for his future and it feels a heavy responsibility to get it right for him. I am hoping that once again, I will recognise the right provision when I see it, that it will give me that sense of ‘home’ when we look around. For me, when Joshua has found the right school and respite setting, then they have both felt like home and so sadly, this birthday he will be evicted from his respite home and next year, he will be evicted from school too. Thank goodness that there is a year gap between them as to lose both on his 18th birthday, would be so unsettling and would leave us in inevitable crisis.
So that is a blessing, as is the fact that we will be supported throughout the change. I was recently asked by a parent if I would advise them to get a social worker in place, now that her son was 16, in readiness for transition. Of course it would depend on how good the social worker was, but I would not want to navigate this change without somebody who knows the system at our side, fighting our corner. Because it will be a battle, no doubt, and so we need a coach shouting out advice from the sidelines and picking us up when we fall down.