I have a daughter with complex needs aged 27. She lives at home with me- Mum, Dad & brother. Following an assessment she was allocated 3 overnight at our local respite facility a month.
My daughter is a real home body and doesn’t really enjoy going o she is always a bit anxious beforehand but the service means a lot to me as until recently I was looking after her and my Mum with dementia, who has now gone in a home. My daughter needs full personal care such as toiletting, feeding, washing etc. So I acknowledge the importance of the service and I have said to my daughter that if she remains living with us I must have breaks from time to time.
However, the respite service is sadly not as good as it could or should be. I myself spent 15 years working in residential care in various locations. Admittedly this was a long while ago before money was so limited on services but good care is a lot about attitude of the care provider as well as money available. My daughter who is continent but can’t get to the toilet herself regularly has accidents at night when she calls staff and they come too late. I appreciate they may be busy with another client so I have never complained about this although I did complain when on 2 successive stays her soiled nightwear came back with the actual pooh log in the clothing- no attempt to flush it away.
I also complained recently when they spent nearly £10 of her spending money at the weekend on junk food that she can’t actually eat due to swallowing problems.
Now today my daughter tells me that on her last visit a carer told her her posture was getting worse and her wheelchair is all wrong. Firstly it is highly inappropriate to draw my sensitive daughter’s attention to the fact her posture is worse. She has a life limiting condition and we have never lied to her but give information on a need to know basis. If things change we discuss with Dr’s what is the best way to proceed. Secondly her wheelchair is about 3 years old which we paid for privately after it had been approved by our local wheelchair services as appropriate to support her. They have also said on one occasion she is very heavy to push. I am a pensioner and I manage. My daughter has a powered chair but is not very good at manoeuvring it in small spaces and I fear if she went in that she could run over someone’s foot or injure herself.
I can’t begin to say how fed up I am with it all. They no longer seem to have reviews so issues can not be raised then. I feel like I am always complaining and I fear that it might make things harder for my daughter when she is there but I certainly think it warrants complaint. Any advice/ opinion welcome.