Our 10 year old daughter has Russell-Silver syndrome, a mild form of dwarfism including oral aversion, failure to thrive and bone age delay. She has a feeding tube (mic-key button), suffers with dehydration, both constipation & loose stool, does not eat solid foods, survives on prescribed milk & yogurts and baby purées and has to be on a feeding pump overnight. There’s lots more smaller issues to her care and I, her mum gave up work to be her full time unpaid carer. She goes to school as normal and they administer 2 of her feeds each day plus 1 prescribed yogurt. She also needs plenty of water which they don’t always make sure she gets. she needs contant reminders as only takes sips. She sometimes comes home with messy underwear. She needs a little help dressing, wiping, wears pull-ups overnight & on days out, is travel sick and has a fear of choking. 

In May an overnight school trip is planned which I have not been invited to attend on as her carer. The head says ‘it’s not school policy for a parent to attend’. I understand in normal circumstances of course parents do not need to attend. Most of the other children know she is different & would understand why I was the only parent there. I strongly believe I need to attend as her carer as some of her needs are very personal and you need experience to manage the pump feeds which school do not have. They are being trained how to use a pump but it’s not the same as doing it for real & knowing what to do when errors occur. It beeps in the night for several reasons so overnight supervision is essential. They say someone will regularly pop in the room through the night. If she’s lying on the tubing, she’ll need to physically be rolled over whilst asleep. Im not happy about this at all. In the morning she always needs a wash which she cannot do herself yet. They said I could sign something to give permission for them to do this. She’ll have to wear pull-ups out sightseeing as she cannot wait & has accidents. She suffers constipation and at home tries to go anything up to 10 times after coming home from school. She can’t do this out sightseeing. She gets travel sick so will have to miss her first 2 feeds travelling and will need to be kept hydrated on the coach via the pump for 5.5 hours on & off. And the same next day going home. They have no experience of this. She sometimes chokes on her vomit too. There’s always the chance her feeding button could come out so they’ll need A&E as the hole can close up between 10-60 minutes, but if I was there I know how to re-insert one safely.

It’s great the head is pro-active in trying to find solutions to my daughter’s needs but it’s not necessary when I know her full routine and should see to her personal care. I’ve offered to pay for myself. I have had a DBS check done. I can’t leave her in their care for 36 hours when they couldn’t even see to all her needs on a recent 12 hour trip, only giving her 20% of the water she needed and also forgot to give her 1 of her prescribed high calorie yogurts. She was in agony for the following 4 days (2 off school) with severe constipation. I can’t risk it happening again. She spent a lot of time in hospital in the past mainly due to dehydration.

Surely a disabled child has a right for their carer to attend on a school trip? Other schools do let carers attend on trips, I’ve asked around. In fact that’s the first thing they ask, but not this school. I’ve been so stressed out, depressed and upset by this for months now, I can’t stop worrying about it and there’s still 8 weeks to go! I just need school to agree it’s in her best interests that I attend!

Please sign if you believe a complex needs child has a right to their carer on a school trip! Thank you.