I had a chat a few weeks ago with a lovely girl from the Young Carers Team. We were talking about my eldest and how she often helps out with Jack and what things would make her life easier, more enjoyable, more normal. One of the things that came up was wanting more time with me when I wasn’t doing something. And so we got on to the subject of NHS services. Before anyone jumps down my throat, I love the NHS. It is thanks to the wonderful staff and incredible equipment that I have my children by my side. Everyday I am thankful for the amazing job they did and realise how blessed I am. But. There’s always a but isn’t there?!
Every service that Jack has to access is a nightmare. From arranging routine appointments (why so difficult to organise?!), chasing people who say they will put things in place (who seem to be all talk and no action), chasing what should be regular deliveries (that never are or if they are then they are wrong), to spending 3 hours on the phone to access a simple collection service, actually attending his appointments (which are always hugely behind schedule), having meetings with school; they all take time.
My eldest has been classed as a Young Carer and will be taken out on trips with others in a similar situation. Which is lovely and a great opportunity for her to chat to people who understand how she’s feeling. But what she really wants is my time.
I know it’s a simple view but if more money was being put into the NHS perhaps I wouldn’t have to spend 3 hours on the phone being passed from pillar to post when trying organising a special waste collection. Or maybe our regular deliveries would be correct meaning I wouldn’t have to spend hours chasing someone down who can sort it out only to be told that the quickest way to sort it out is to go down to the depot and collect it all myself. Maybe our appointments would be closer to being on time, meaning that I wouldn’t be so late home that I miss having dinner with her.
Maybe if services were a bit more effective then all parents and siblings of disabled children would have a slightly easier ride. It can be a tough one at times and having to chase someone who still hasn’t done what needs doing, even after the 100th time of asking, makes it tougher.
Maybe if things worked properly then the need for a Young Carers programme would be reduced slightly…Maybe if things worked properly, everyone could have their needs met…