Sadness has reached new depths (how is that possible?) with the arrival of the unit records through a superhuman effort from my mum, and eventual delivery of these records via several emails from the NHS trust regional director and her PA. The back story is now available. And what a distressing and harrowing tale it is.
These records provide the most devastating account of LB’s time at the unit. I haven’t opened all the emails. The ones I’ve read detail LB’s confusion at being at the unit, his consistent expectation (hope?) that his mum would come and get him. His desire to come home. The hours and hours and hours spent watching DVDs.
Nonsense care plans/risk assessments. Yawning pointlessness. Shifting choices, non action, destruction. They even gave him a maths test with equations. The dude couldn’t count to 10. What a fucking waste of everything.
I should have gone and got him.
mydaftlife 
So..so ..upsetting but you were doing what any of us mothers do …your best
You weren’t to know how bloody useless this “care ” was . It’s a fu*king disgrace . My heart breaks for you & your family . Our dd is in care and thankfully doing well and for now is happy .A heartbreaking and soul destroying experience for any parent so I honestly can relate . I pray every night that she is happy and well looked after . But we are human and that was the only solution we could come up with to keep her behavours managed and her life structured and I know guilt is an enormous part of grieving but you honestly weren’t to know how terribly awful this provision of care was . Hope it goes well at solicitors today . Thinking about you so much at this awful time .
no you should not have gone and got him, you needed the respite.we should be able to trust professionals to be looking after our children/ adults well being. health ,security emotional needs and offer an assortment of play activities , to fill their day up. I have been like many of us mums to exhaustion and back. Respite is essential .
You trusted the system to care for LB just as I trusted the system to care for my son. The system and people working in it let our sons down! We have a right to expect professional care, it wasnt and now we grieve! But dont blame yourself all you ever did was love and care for LB. Like with my son LB loved and was loved for his entire life! Hold onto that Sara!
Sara, how utterly dreadful you must feel. You need answers – fuelled by your love for LB – go get those answers. Trust in the support and care of those who know and love you and of those who have never met you but stand along side you to encourage and support you. You are in our thoughts.
You didn’t know what you didn’t know. How could you? You were being deliberately excluded as a matter of policy.
Even if you had gone to get LB – would they have let him go? It doesn’t sound likely.
You did everything that was your responsibility, and then some. Of course the if-onlies will never go away, but you were doing the best you could with the knowledge you had. Of course, if you had known better, you would have done even better, but your lack of knowledge was not due to negligence or inattention on your part. You were actively prevented from gaining accurate insight.
None of this is your fault. Blame must lie where it belongs, with the people who arrogated to themselves the right to determine the course of LB’s life, then failed utterly properly to discharge the responsibilities associated with that right.
Sara, there should have been proper support in place. LB wasn’t the first person stuck in services like this where family wanted to bring them home but the support wasn’t available (a case called Re RK looked at the exact same issue, that was the back story to the Winterbourne families as well). The problem is the system, not the families. It’s agonisingly shitty that this was the only option on the table. You fought and fought and fought for the best option – to get the support he needed. I also agree with Kay that there’s no reason to believe they would have discharged him had you asked them to – just because a person isn’t formally detained, doesn’t mean they are free to leave. They had a duty to keep him safe, and no family could have foreseen this. Hope it goes well at the solicitors.
Please, please don’t get into the what you should have done, or what might have been. The reality was you hit a crisis point and did what anybody in your position would do. What went wrong was that messed up system that just did not exercise the duty of care you could reasonably expect, let alone failed to offer the real level of care LB deserved. You have nothing to feel guilty about – but so, so much to feel angry about – and not only for you to be angry about, but all of us. It is so important that LB doesn’t become just another statistic, but that a real noise is made about just how rotten and shoddy the so-called care system has become and the health system is becoming.
Trust the visit to the solicitor is helpful.
This is not your fault, Sara. Don’t let the anger turn in on itself into guilt. It’s the easiest thing for a mother to do, and yet the worst. We are all with you to keep you on track and stop you from torturing yourself. This is not your fault.
mothers always feel guilty. I even blamed myself when my son was born prematurely. The question should be , why as his mother are you only discovering this information now? And if its true why did they not help you to get him home.