I am becoming really alarmed and scared for my Sons future. We have been constantly battling with the hospital in question to have my Son moved to the North West as this is where his family live and we can support him, he has no friends or contacts in the area he is at the present.
However, although it was decided at a meeting with the various professionals that he was in the wrong rehab ward to meet his needs which are less about physical now and more about cognitive and behaviour - nothing other than a few reports seem to have been done to actually request for the funding to move him and action taken.
My son is extremely fed up and frustrated and cannot see the whole picture, he keeps telling us he is going to discharge himself. He has no money, no family or friends in the area, nowhere suitable to live. He says he will live on the streets and he really means it. Dolls is in place at the moment, but the hospital have said that the time is not far away when it will no longer be needed. Our feelings are that, rather than push for NHS funding to the North West where there is a suitable rehabilitation facility for him they are waiting to see if he discharged himself which will save them money. My son is NOT at the heart of best decisions - money is! We have flagged up that my Son is completely incapable of seeing the pitfalls and repercussions of discharging himself. We forecast he will walk out - then the more frightened and confused he becomes the more incoherent his speech becomes, his thought process which may have appeared to be rational - will very quickly become very irrational. He will sound and look drunk, so people in turn will shun him. He will be vulnerable and probably, if he hasn’t lost his meds will forget to take them. This will result in him needing emergency medical care. What can I do to prevent this from happening, well as I have not got the funds to move my Son and pay for his rehabilitation place it appears I can do nothing, other than keep flagging my concern up again and again. I wonder if there is anyone who will hold there hands up and take responsibility if the fears for my son happen! I shall be expecting somebody to take ownership of the forthcoming events as my Son is cognitively not able to. It’s a sad, scared place we find ourselves in as we are lead to believe the vulnerable are protected and the hospital always put the needs of the patients at the heart of any decision making unfortunately I am witnessing this is not the case. I am now going to ring my Son again, to try and reassure him and try and deal with his anger issues as he now thinks we are telling him lies about the move we hoped would happen and isn’t. I apologise for letting off steam here and moaning once again.
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Cotton50
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Yes, we have spoken to Headway, 2 formal complaints gone to PALS and we are still waiting for satisfactory reply from them, as is our MP who is waiting for reply to his second letter. It’s disgusting.
This is so sad and potentially not uncommon that patients with such specific needs wait so long for a bed to become available, and sought. Sadly the facilities are few and far between. This does not help you or your son though. There are, or should be speak up guardians at the hospital who you could seek out. They may be able to help you untangle what to do and processes, or find out for you. I can see how desperate you are to get your son what he needs, and the care cogs going much slower, but stuff may be going on behind the scenes. It sounds as though the hospital realise they have a duty of care hence the DOLS, and the comment about how long it continues may be because they hope he will improve/make progress rather than a wish of convenience as regards your son discharging himself. So hopefully his best interests are seen within the situation as it is.
I am not trying to defend his current input, I am perhaps thinking aloud here. I hope someone has explained to you what has been done regarding your son's next step. If not then this would help and how getting the funding works. One of the points may be where his GP is - I don't mean this to imply it is a post code lottery, but his personal demographics.
I am not sure if this has made much sense. I hope you are able to talk about your own feelings and emotions with someone. With best wishes x
Is there an advocacy service in your son’s location? Granted, as a parent you’ve been his advocate up until now. Although an advocate cannot influence or force an outcome, one could possibly help your son express his true wishes and feelings. Saying he’ll walk out and live on the streets sounds like he’s given up and venting his frustration. If someone independent were to discuss his options with him, he may have something different to say. Once the Dols is removed he’ll be treated as if he has full mental capacity and therefore able to make his own decisions, however detrimental to his well-being.
The local branch of Headway, if there is one, may have an advocate or might suggest another advocacy service.
Thank you for taking the time to reply all. All the above have been addressed by us and discussed at length. My Son has been very vocal about his wishes to be in the North West and closer to us his family. Although it is a more straightforward route to have a GP address cross border funding can be applied without this. A GP address cannot be provided as the facility is in Liverpool and we live over the border in Wales, we have already met with our practice manager and discussed this possibility. It's all rather confusing. But, the hospital have been made aware of this and have been informed by us and our MP every step of the way. The reason a GP address is needed is all down to which area funds the ongoing care. So money as I said is at the heart if this, it's a nonsense with no common sense being applied. The upshot is they have rustled a few papers, made some noises, but actually done very little to proceed with cross border funding application. What they have done is lead us all a merry dance.
Thank you Kavib, I have not heard of this charity. I will contact them on Tuesday. We are here in the South today and tomorrow visiting my Son, improvement is good but he is constantly repeating his question of how much longer do I have to be here for? he is so bored and fed up and for us it is exhausting trying to reassure him a move will come eventually, he just has to be patient.
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