I appreciate that my detailed needs are not necessarily the level at which you might normally operate. What I need is someone who can coordinate services across the board and who is able to support me ...most of the time I am exhausted and find that if I allow myself to do nothing but care and then try and fight for services I start to wish I wasnt here at all. Can you please show me a way of living with Ali, not forgettting his older brother Angus who has Aspergers and who just exists without hardly any focus on him because Ali's needs are so consuming, which is healthy and sustainable and which meets all our human needs and rights. Is that too much to ask? It feels as though there are people being paid to provide services both in Social and Health who spend a lot of time assessing and box ticking without ever dynamically following through. At times SS [a carers shorthand for Social Services] seems to stand more for "Screw your mind and Stamp on you when you are down". Basically I am asking for your help to make our life work. Please.
Karen