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‘Had a transition social worker who was ‘‘chocolate teapot’’ useless.’ Parent. 'Wish could I go to a meeting and come out with spring in my step, people are helpful and not have sleepless nights'. They get paid to do it but no appreciate that you are squeezing this in and working.’ Parent.
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‘Had a transition social worker who was ‘‘chocolate teapot’’ useless.’ Parent
'Wish could I go to a meeting and come out with spring in my step, people are helpful and not have sleepless nights'. They get paid to do it but no appreciate that you are squeezing this in and working.’ Parent
‘The saddest thing is I’ve not got anything positive to say, is really sad. If talking about another young person of 17 or 18 would be get excited as starting first new hob, or university. This is a nightmare. Nobody has said ‘‘here you go; here is a pathway on where you can go or what you can use’’. Nobody can give you that.’ Parent
‘No one seems to ask the family how they feel. We have to have coping mechanisms, there is just assumption you’ve been born with it. The agencies don’t work together.’ Parent
‘Now during transition period hospice name cannot look after him as he is over 18. They have cut back a lot of services; trustees had no choice to put a hold on all respite care, single days and holidays.’ Parent
‘One of the striking things about the transition process is a clear change in how our child is dealt with as a specific individual, with each day we are doomed – our voices are diminished.’ Parent
‘Issue is that he was too complex for social services, also because he was on cusp of children and adults continuing care: there was no handover during the 18 year old phase and the services didn’t speak to each other.’ Parent
‘The NHS and adult services aren’t joined up. They just say ‘no’ without giving solutions. There is no one person from children to adult services linking, children services don’t know what is happening in either sections (adults or health).’ Parent
‘The children and adult services don’t merge and speak, they say they do talk, but they don’t.’ Parent
‘At the time the school should have explained what the meeting was about: they need to highlight the importance of transition.’ Parent
‘Parents should be told about services and given information as it then gives them a choice if they want to access it if they can afford it.’ Parent
‘However severely disabled people are they need their independence!’ Parent