I posted a few hours ago for advice on respite care for my Autistic son, I'm sitting here holding bad the tears so my husband doesn't know, can't talk to him as here's had years of stress and is on chemotherapy. He's not son my biological father but as been a good dad to him but he can not take anymore stress and as had to walk away. I'm desperate and feeling alone in this, I'm afraid for my welfare and mental health, I'm dreading everytime the phone rings in case it's my son threatening to kill himself or harm I've got no energy left in me to fight anymore. I wish I could magic money so I could afford the places that he could go to but I just don't have it.
Please does anyone know of any services that assess for immediate respite care for him. Our mental health service doesn't understand autism the last time he had them involved they were ment to send someone round to see him the next day after discharging him. Only to find they forgot which ended up in cutting himself up as he felt no one care and he was worthless.
I live in the Warwickshire area. I'm desperate and really don't know how longer I can't cope.
Thank you crystal, I've never reached out before but I'm desperate and it's affecting me so much now I'm worried. I will try again with the services. The worse of it all he wants the help, he hates living and feeling this way. But I know I can only do so much and he's starting to turn away from me as he's seeing that it's affecting me now. I am worried that he maybe just end succeeding and in a selfish way I want him to stop hurting and feeling this pain. I can't believe can say that about my son and being a mother. Thank you for taking the time to write this. I guess I also need to voice off and be heard. I can't do that with family anymore. X julie
You will know two things as a senior nurse
1) it's not those with the most need it is those with the loudest voice who get the best care
2) in an emergency keep yourself safe first because we don't want to deal with two casualties.
The problem is you are thinking about everyone else and not you. What happens if you keel over with a stroke?
First of all everything below is dependent on you getting POA health for your son with you as his attorney. I can get away with written consent as my step daughters agent for now but we will do a POA if needed.
Whenever you speak to anyone about your son's care from now on in, get out your smartphone with a recording device and say you are recording the interview so that you can refer back to it as needed to remember what is discussed and agreed. You also write down the first and last names of everyone you speak to and their professional designation. If they say "we will see you on XX day" you say "if I do not hear from you what phone number do I call to find out where you are." They will object, but as long as recording is done openly and you say you are recording you should be alright. If they kick off ask they call patient services to clarify.
If they complain about being busy.and overstretched you say "I am sorry you have this problem however we are discussing my son's care and by recording details I'm making sure he's getting what he is entitled to." Get your husband to get you practiced at saying it calmly and smoothly, because I suspect you hesitate and they take advantage of you being a fellow health professional.
The first moment they slip up you complain in writing on your son's behalf. You use Patients Advice (have it on your phone already) and you phone them before you send in the complaint and you say you want the receipt of complaint acknowledged in 7 days. If they don't you copy it to the commissioning group and your local MP.
Any complaint to be successful needs to site the patient's charter AND give reasonable expectation of care i.e. if CMH nurse X can not make a previously agreed appointment, I expect a phone call and that will include discussion as to when the next appointment is. If the nurse can not make the call herself I expect it from a manager.
You won't be popular. I joke with primary care colleagues including our GP my name has a big black mark against it. Our GP has made me promise I will tell him if I'm unhappy because my letters are so well argued.
You have to think "my kid is more important than anyone else and I'm not going to accept this kind of poor care or any more excuses."
My only ever fail has been the family court and that's because the lawyer for child was a worse misandrist than my SOs ex and could not believe his daughters were safer with him.than her.
If you want help wording complaints bring them back here. It's all an art,
You have to look after yourself as well. You need to make sure if you go off sick that your management knows exactly why - you can't cope with the lack of mental health services for your son and this has resulted in stress leave.
It's not easy to do this but it's worth it. My SD20 was refused ADHD assessment but the psychiatrist who saw her after the complaint got her seen said I was completely right...and that was worth gold.
No thanks needed. I jut wanted to make sure you had seen a possible avenue of help.
Thank you, as a nurse I fight the right for all that I care for but I've found this years just been to much. I will start again and make a plan of action. Just talking about it makes feel relief especially to someone that understands. Family is great but they don't know how to help let alone they gave their own problems. I guess I'm feeling angry at the lack of support for both of us. I might take you up on the offer of helping with writing a complaint. X julie
Hi Julie, just been wondering how you are doing, and your son? It's very difficult to suggest anything that would be likely to really help, given that you seem to have done already more than many other people would manage and your son is more than willing to engage in something to help him get better - guess that and the fact that the situation seems so overwhelmingly desperate is why relatively few people replied, not that others don't care (just in case you were wondering; that was my reason anyway). But maybe telling others and the replies you did get have at least helped a little bit and made you feel a little less alone.
Sending you a hug for the evening, guess it won't do harm whatever the situation is now