EHCP - health section amendments

[Freddiesfortune]

I’m shamelessly placing this in AIBU for traffic because of the urgency.
I’m stuck with the LA refusing to amend my child’s EHCP health section. They won’t write a formal letter to refuse. They won’t answer my emails.
Her review is a matter of 2 weeks away.
Both the LA and school (special school) says it can “review” her EHCP and decide on any changes or formal recommendations by clinicians and decide provision with a review.
Her last amendment was in 2023.
She had a diagnosis recently of a rapidly advancing health condition that could, if untreated, cause her death or even more impairment.
She is severely physically disabled and nonverbal.
The NHS refuses to give her the therapy she needs (local services) despite consultant recommendations from a major children’s hospital.
The NHS won’t attend her review meetings nor provide written EHCP paperwork.
I can’t get through to SENDIAS.
Any advice very welcome!!

@FreddiesfortuneIt’s a point of huge frustration for LAs too that they can’t get health to contribute meaningfully to EHCPs!
If you want sections C, (Health needs) And section G (Health provision) changed, then this needs NHS professional reports. The diagnosis letters etc will cover section C, the needs section, just make sure you have copies and give them to the school and the local authority.

Section G, the provision section, is a bit more complicated. If the therapy is to support an educational need it goes in section F and is provided by the local authority, no NHS input is needed. If it is purely to support a health need, then it goes in section G and is provided by the ICB. Local authorities cannot make the NHS provide what is in section G, (there is no legal pathway to do this ) therefore as local authorities are legally responsible for the delivery of what is in the plan they won’t to add it if the ICB is not offering it.

I think you need to make sure that her needs to go in section C at this review meeting. What is it that you want provided in section G? Will it be provided anyway by the NHS?

The ICB only has the power to veto for G, not F, even if it is therapies that the NHS may or may not go on to provide.

The reports do not have to be NHS reports. Independent reports or other reports must also be considered and SENDIST will consider all evidence.

Thank you all. So she needs hydrotherapy (which I understand is like hen’s teeth). I have 4 separate reports saying that (one private physio report, 3 NHS) and general physiotherapy.
Theres a push on time. We need to get her past the age of 10 ideally before surgery but the spinal surgeon wasn’t optimistic we would without these interventions.
I understand the limitations of NHS provisions but it’s a bit of a kick in the teeth to be told (locally) she can’t have any more this year when there’s been a 7 year gap in provision (and arguably but I could never prove it) it might not be this bad now if more physio input had happened. She was signed out of physio in 2024 and this issue really started up last year. But that’s not a road I’m going down. I just need to try my hardest to secure proper care for the next year until she’s 10.
She is nonverbal so cannot explain pain but she’s notably finding breathing a bit more difficult which is where panic (mine) starts setting in. The problem is the spine compressing lungs and/or heart and I can’t even think beyond what would happen if that starts.

Absolutely agree with what you are saying, apologies if I was not clear in my response. The reports do not have to be NHS ones at all, any reports should do and they don’t have to be written in an EHCP format, the LA should pick out the pertinent points. You can direct them towards points!

If it’s in section F it must be provided and then the test is whether it is an educational need. It would be hard, but not impossible, to prove that hydrotherapy was an educational need but just adding it to section G does not mean the ICB will provide it.

I think you should also approach the ICB locally and ask for it to go to their panels. I had an operation freely available on the NHS but not within our ICB approved for my son after MP involvement. This came with pre and post op physio from local providers and from the hospital providing operation. It’s tricky working across ICBs, even more so now as they are shrinking fast.

Hydrotherapy absolutely belongs in F.

Provision in F doesn’t have to be direct educational provision. Health care provision that educates or trains is deemed special educational.

There is case law where hydrotherapy is in F. The case wasn’t about where hydrotherapy belongs, it was accepted by the FTT and both parties that it belonged in F. The UT case was about the wording rather than whether hydrotherapy should be in F. But I mention it to show it can and should be in F.

In the vast majority of cases, physio belongs in F too.

I have 3 DSs with EHCPs. All 3 have physio in F. DS1 has swimming (a mix of aqua/hydrotherapy and swimming in a normal temp pool for medical reasons) in F. All provided via independent providers. I have supported numerous others to secure physio provision in F and several to secure hydrotherapy, too. However, many have to appeal to get watertight provision, and that isn’t going to be immediate.

Oh good, I’m pleased to hear that. We never got it into F, or G for that matter, but my DS did get hydrotherapy anyway though.

@Polkadottablecloth if DS still has his EHCP, you could appeal when you next have the right of appeal.

Sorry I’m coming back so late on this - I live in Essex - the way they do it is run through the school. They don’t actively seek medical input.
I’ve got a senior physio attending the EHCP meeting - for the first time - as I’ve been badgering them about it.
I expect they’ll say it’s not available.
ice complained to the ICB.
they’ve stonewalled me.
The local hospital won’t answer me either.
A lot of the attitude comes from the fact I reported one of their consultants for assault 7 years ago. They systematically cut services to my child. I left it because she was on an upward trajectory. Now she isn’t and I’m not letting them push her away because they don’t like me.

Despite what some LAs think, the law is the same in all English LAs.

LAs can delegate responsibility for the advice gathering and holding of the meeting to the school but they are still ultimately responsible for the entire annual review process. Have you spoken to your child’s caseworker about it?

@FrothyCothy
Fo you mean her social worker? She’s new and totally shit. And totally terrified of me too which probably doesn’t help. And insists she can’t do anything about the health part.
She doesn’t understand the fundamentals she needs to comprehend the medical side (this could be a language issue) - I made my husband do the annual review for social services because I would probably have lost it with her.
The thing is - a lot of people don’t understand medical information I understand that - she was thinking that my child having an operation sooner rather than later would be better. That’s because usually when people need surgery that’s what is true but not for spinal surgery where growth is still a factor. If my child was 16 surgery would be less problematic but she’s only 8.
And at any rate surgery isn’t corrective - it’s preventive yo stop her spine crushing her lungs or heart.
So in many ways the longer surgery (which is also likely to leave her in pain possibly for life) is the last thing she “wants” - it’s the last resort.
Hydrotherapy has always had an incredible effect on my child. I don’t even understand why that is but she has a nervous system disorder and whenever she’s had a couple of sessions she starts being able to do things she couldn’t do before.
But it’s now the only recommended and strongly recommended means of keeping her spine flexible which is what she needs to stop the spine fixing into a dangerous or more complex position.

I mean her SEN caseworker - someone should be assigned who will process the LA’s decision after the annual review?

@FrothyCothy
she doesn’t have one - I don’t think they necessarily do that in Essex

It will be someone at what Essex call SEND Operations.

When she had her last annual review, did you get a letter saying what the decision was (maintain/amend)? Does that have a named contact on the letter?

send.essex.gov.uk/search-support-groups-and-activities/send-operations-team

No @FrothyCothy - it’s just sent from school. I know send ops do it. But they just send the school documents with the family input but attached.
that’s what’s I want changed this year. I want it amended to reflect her changes since the spinal issue was discovered

Following AR meetings, you should get a formal decision letter from the LA, not the school. That applies whether the LA amends or not. It is just the timings of when you receive it that differ if they amend or not. That letter is important because it is the decision letter you receive that gives you the right of appeal. If you read my pp on the 29/04/2026 19:06, it sets out the different parts of the AR process.

@scoopofmintchocchipicecream
I did follow your email.
But I have never had a formal letter after an annual review. Maybe after her first EHCP in 2021 when she was 4. But never since.
I know what is supposed to happen and you’ve been very helpful with explaining that. But that’s not what HAS happened.
Ive never had to even try to challenge any part of her EHCP until now.
Thats the problem I’m having- and SendOperations will not discuss her case until after the EHCP meeting we have on Tuesday (which they are not part of).

I think you’re going to need to submit a formal complaint about lack of process OP, and pursue it as far as necessary. As per the code, an LA SEN officer must be invited to the annual review. I know in many cases they don’t attend but you would be within your rights to insist on their attendance given the change in your daughter’s needs and the wording of the code itself.

You need to challenge the LA not following the proper processes. You don’t have to accept the LA acting unlawfully. So, for example, if the LA doesn’t send a formal decision letter and chasing doesn’t work, you can look at a pre-action letter. Unfortunately, if you don’t, the LA sees that they can get away with acting unlawful without challenge and will continue to act unlawfully. If you give the LA an inch, they will take a mile. You shouldn’t have to, but sadly it isn’t going to change any time soon.

The LA doesn’t always attend ARs, even when there has been a change of needs. In fact, I would say they are more likely to not attend than attend, but I don’t have any official statistics to support that assertion. That isn’t a barrier. Neither is the LA refusing to discuss amendments before the AR meeting has happened. That is also normal.

Thank you both @FrothyCothy and @scoopofmintchocchipicecream .
You have both been amazing!! I’ll do what I can before Tuesday and will write you my MP too.