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before i instruct a solicitor any ideas on what to do ?

(13 Posts)
twlight Tue 09-Apr-13 12:08:05

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 ?

wasuup3000 Tue 09-Apr-13 12:11:31

Go and sit in LEA offices with your son and ask to see head of education department and don't leave until you have?

SallyBear Tue 09-Apr-13 12:13:37

My DD was joint funded by the LEA and the PCT as she started school with a tracheostomy and a gastrostomy. It was bit of a bun fight but we managed to get it without needing to get legal representation.

bigbluebus Tue 09-Apr-13 12:59:06

Apparently 'Panels' have no legal status. They are purely an internal mechanism mainly used by LA's and PCTs to delay decision making and to save money by delaying putting provision in place!
See link to Luke Clements website:
Write to them giving them a deadline (which is realistic) and tell them that if they have not made a decision by then you will be instructing your Legal Advisors.
We have done this twice during DDs life and it has worked both times.

JsOtherHalf Tue 09-Apr-13 14:49:16

Have you had an assessment for continuing care funding from the health service yet? Any web links for details about children seem to be broken because of the pct changes this week.

If you haven't you could always ask your local disabled children social services to refer you?

bigbluebus Tue 09-Apr-13 15:34:30

js Yes, I discovered the broken links to CHC funding assessments the other day when I was trying to find them for someone else on another thread on the AIBU board!

twlight Tue 09-Apr-13 17:06:11

CHC funding for respite has been removed - i did ask for a second opinion but it didn't make any difference. thanks for the links and advice xx

JsOtherHalf Tue 09-Apr-13 18:35:54

Chc has not been removed in parts of west yorkshire at least. I know of one young person who get 16 hours per week in the home. Another gets 19 nights a year in a residential school respite centre. Both young people are under 18.

I wonder if it is to do with the whole pct changes, and each area makes it own decisions?

AgnesDiPesto Tue 09-Apr-13 22:15:17

Try your MP? Waive the govt new guidance at MP on children out of school on health needs on dept of ed website. Complain to local govt ombudsman about delay.

MareeyaDolores Tue 09-Apr-13 22:30:52

Summary of national expectations, a useful NHS continuing care children document and

MareeyaDolores Tue 09-Apr-13 22:31:36

another one

MareeyaDolores Tue 09-Apr-13 23:23:03

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 grin

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 hmm it might be that several years hence, our expensive and time-consuming families end could end up unregistered and hence uninsured angry sad

twlight Wed 10-Apr-13 11:29:47

HI MareeyaDelores - thanks for the links - interesting and scary stuff !

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