Not happy with respite

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.

My son, now 40, has learning difficulties, but is otherwise fit and well. He is now in Supported Living, but we’ve had many problems with carers.

Respite is vital to you, so somehow you need to make this place better for you and your daughter.
Start a diary, and list all the problems in order of priority (easiest with a computer file).
Then, start recording EVERYTHING with photos on your phone.

The toiletting issue must be incredibly distressing for your daughter. It raises the issue of whether this place is suitable for her, does it have “waking night staff”? What is the ratio of carers to carees? How many beds does it have?

It’s really easy to find these details, just make a “Freedom of Information Request” to Social Services. It may be that when your daughter is there, they need extra staff.

Are you getting enough support with her when she is at home? When did SSD last do a Needs Assessment for her, and Carers Assessment for you? Do you have copies of each? Are they accurate?

Don’t worry if you are always complaining - join the club. I’m sure it says “Beware, Attila the Hun” on my file.

Have you ever made a “Subject Access Request” to see what they’ve written about you and your needs on their files?

Although they have many other differences, my partner also has mobility issues which prevent him getting to the toilet and is usually left to wet himself (or worse) in care homes and hospitals. They often try a night conveen which might be worth considering for your daughter. In my partner’s case it usually just makes the situation worse as he routinely pulls it off (unintentionally - his body does its own thing a lot of the time). Which a) means the whole bed needs changing and cleaning and b) he gets blamed for. Also then he has to relearn bladder control when he gets home which makes the first few days back even harder. Also watch out for staff not bothering to change wet sheets when they need changing. This has happened to him a lot in a variety of different settings. He’s also recently been told about his wheelchair and his posture. I wonder if there are some new guidelines out or something?

Did anyone ever take any notice of anything brought up at the reviews?

Don’t be afraid to complain. I reckon in the current circumstances the only people who get looked after are the ones where there’ll be consequences if they don’t because someone out there will complain effectively. Sad but true.