Mr. Damien Douglas:

We each gave our story today. We each opened our hearts to the committee and to whoever else sees the meeting. We were constrained by the time we had to make our presentation. If we had longer, and a cup of tea and a scone, members would hear an awful lot more harrowing things, as well as joy. It is not all bad news but it is real news, real family life and real family dilemmas. That might be for another occasion. If members were to dig into any of our stories, they would get an awful lot more stuff. Certainly, there are things my wife would not like me to say in public to anybody else because there are real things we just cannot share with anybody else, except possibly with other carers because they know it, they are living it and they know where we are coming from. That is one point.

The Chairman mentioned somebody whose son goes to day services. As I said, when a child who is attending a special school reaches 18 years, school is gone and there is the whole thing about getting appropriate day services. If people are lucky, those services will be five days a week, if they are very lucky they will be six hours a day, and if they are very, very lucky they will include transport to and from services within that six hours. It is not as though those six hours a day are theirs to go off and sunbathe or anything else. These are the hours they spend washing, cleaning, hoovering, shopping and doing all the other stuff that needs to be done, even just eating peacefully and getting a bit of lunch. In our case, once the girls come home at 4 o'clock in the evening or whatever, we are at it full time with them between feeding, changing, some sort of therapies and whatever else we need to do. Even when they are in bed, we have monitors on to check whether they are choking, having seizures or whatever is going on.

Due to Covid, respite care is more or less gone. Where it has come back, it is very limited compared with what it was. If someone is unlucky enough to get Covid, he or she is still on call because if the button comes out, that person is called to go and fix it. It is not like there is staff on duty. If there are any problems, we have to bring people to hospital because there is no staff cover. We spoke earlier about using a hoist. When the girls were in school, I was involved in drawing up policies for hoisting. Health and safety is very explicit in that there has to be two people to do it. I have no problem with that but when I go home, those policies are totally invalid because my wife is not always there, or I am not there when she needs to do it, and it comes down to one person alone. There is a major dichotomy between what we expect from professional services and what we as carers have to do on a day-by-day and hour-by-hour basis.

There are more anomalies than just money and so on. It is about understanding what the life of a carer is. This is not giving out, moaning or anything else. It is trying to have people understand the real story behind it.