Child has been out of school for 4 months following a major op. Health needs have changed and are now too complex for current school so they say he can't go back. Only school in area that can cater for him is independent. LEA are stalling - its been to panel once and was deferred for more information. Don't know when it is going back to panel. Meanwhile he is off school - he is 14 with complex needs and requires 24 hour care. He can do nothing for himself and i am exhausted. How can i push the LEA to make a decision ?
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before i instruct a solicitor any ideas on what to do ?
12 replies
twlight · 09/04/2013 12:08
OP posts:
MareeyaDolores ·
09/04/2013 23:23
Changing respite etc because of the 'nhs changes' is just a con. The emperor has new clothes so we'll cut your respite. The new bodies aren't really that new. And their responsibilities for the health of their registered patients haven't yet changed. As far as I know the previous regulations about 'provision' are still valid, it's just the bill-paying and decision-making structures that have been refurbished.
At the moment, almost all children's healthcare remains the responsibility of the NHS, and the 'continuing healthcare' definitions don't seem to have been adjusted. The adult assessment teams are still in situ, so if you need an assessment, I would suggest hassling them for the relevant paediatric contacts.
Now, for a barely-relevant but highly tempting rant about the nonsense that is the 'radical restructuring' of the NHS 
This is a lovely picture of the chaotic 'structure' that passes for governance of the NHS.
Clinical commissioning groups CCGs (established 2013) are basically just smaller versions of the old borough-sized primary care trusts PCTs (established 2002, and rejigged 2004),
which were in turn just bigger versions of the primary care groups (established 1999). The PCTs were formed by mergers of Primary Care Groups (est 1992) which came from district health authorities (est 1982), which were a bit too big having replaced the smaller area health authorities (est 1974).
CCGs, like their predecessors, have managers and administrators on staff, and some local doctors and nurses on the various boards. They exist to distribute the local health budget according to what they think needs to be provided, and to pretend to choose who should provide it. In practice this means the local area is allocated an annual budget, and with that they basically pay whatever is requested by the local hospitals, CAMHS, and other local health services. Until it runs out of course. But this isn't new. They also collect data about the various services, some very useful, some less so. Since they are too small to have specialists on staff, so generally buy-in specialised help (from offshoots of NHS England, usually) to interpret this data.
GPs used to be a distant branch of this type of local framework but have now been brought under central control. Currently treated a bit like academies, they're funded according to a nationally agreed formula, with occasional extra splodges of local money for special local services. The centralised NHS commissioning Board (now semi-detached from the Department of Health and re-named NHS England) is in charge of the GPs, and is also in charge of paying for health visitors now.
Slightly concerningly, the health visitors will pass over to the local authorities in a couple of years. And the legal responsibility of the CCGs for the 'people of the area' has been replaced with a legal responsibility for their 'registered patients' so unless the politicians feel like protecting our rights 
it might be that several years hence, our expensive and time-consuming families end could end up unregistered and hence uninsured 
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