terrifying night in A&E

[Daisy]

We took a message from son's care home to tell us he was fitting but ambulance was on its way. Arrive to find ambulance and police car in drive. Our son has severe learning difficulties, autism and challenging behaviour. He has never fitted (he is 28) and we were convinced that it was due to an increase in his meds and the introduction of a mood stabiliser. After several hours the hospital decided to give him a CT scan which meant a general anaesthetic. They then told us if there was a bleed they would operate immediately. We were desperately worried and we stayed with him throughout most of the procedures. Luckily he was okay and we spend the night by his bedside making sure he didnt disconect himself from monitoring machines. I have to say the hospital staff were wonderful.
While we were there the ambulance driver took us to one side and said they had concerns about the care home. The call had come through that they were to deal with a violent adult, no mention of a care home, which was why the police were in attendance. They felt they werent welcome when they arrived and something felt "off" about the place .They said they were going to put in a report to adult safeguarding.
We now have him at home, he is sleeping as I type and we have no desire to return him to the care home. We have had concerns about the medication levels and the fact that we are never consulted, only informed. The hospital neurologist has said that he feels the meds should be withdrawn slowly.
We have contacted social services, but we dont know why we should do next.

[ladybird17]

Gosh Daisy how horrifying for all of you. Well done the ambulance chappy for alerting you - I wonder if he was breaking any rules by telling you? Even if he was it shows he cares rather than just towing the official line.

I hope SS can start unravelling this mess for you and you can all get an end result that you are comfortable with.

Is it worth talking to the neurologist and just explaining that your son is at home for the time being and what should you be doing about his meds I wonder? Just a thought.

[Treez]

Hope all is a little calmer now. Yes it was lovely of the ambulance man to give you that kind warning, common sense prevails, though keep him anonymous, so often people wont speak out or give that information for fear of repercussion. Take care and I am wishing you all the best in getting answers and remedies.

[Melly1]

Daisy,

you have had concerns re your son's carehome before. I think it is time you listened to your instincts and started looking for a new place for him to live. The ambulance chap sounds great, good that he has reported his concerns to adult safeguarding and also shared them with you.

I think you should investigate power of attorney (or something similar) so that you have to be involved in best interest meetings re decisions such as meds changes etc

I'm glad your son is at home with you and sleeping.

Do you have the contact information of the hospital neurologist? Who prescribed the latest meds your son is on? Hopefully you can get the slow reduction started asap.

Sending you cyber support.

Melly1

[Daisy]

Thank you all for your concern.
The neurologist wrote how to reduce the meds in our sons discharge letter.
We have investigated power of attorney before. We were told it wasnt worth doing as he has no assets and anything medical would acted upon "in his best interests". There was a delay in the hospital because he was unable to give consent and they seemed a bit unsure what to do. Lots of phone calls were made and eventually we were asked to give consent.
We are going to start looking for somewhere else for him, but no hurry. We will be very careful before we jump into anything again.

[bowlingbun]

What a terrible situation. Contact Social Services and make sure they know that he is home, and they do an up to date needs assessment on him, and a Carers Assessment for you. Don't forget to claim his benefits for him. If you have claimed DLA before he might have what they call "underlying entitlement" in which case it might just be possible to kick start it into payment immediately. This used to be possible when M was in residential care but came home for holidays, but that was a few years ago, so they might have changed the rules.

[Violet]

Sorry that you have had such a worrying time. The others have offered good advice and I hope the situation will be greatly improved soon, as it should be.

[no1mum]

Very wise advice given. Sending hugs. x x

[pamr1]

hugs from me to daisy. life is never going to be easy with children like your son and my daughter and many many others. all the best. pam x

[sturdygirl]

How very upsetting for you, sending ((hugs))
xx