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!!

I think to get accurate advice you're going to need to be specific.
What diagnosed conditions does she have?
What do you feel needs added to the EHCP?
Have you professional evidence from a source that agrees? Or does everyone else involved disagree?

Try to speak to IPSEA or email their information service.

If the NHS has responsibility for educational therapy provision, then they have to either attend or provide a full report at the following points

• Assessment for EHCP
• year 1
• year 5
• year 10
• year 12

And when the child's needs significantly change.

However, in many areas the nhs is not responsible for education therapy provision and reports. I work in a children's physio team. We provide input into ehcp's and support for children in both special and mainstream schools. However my OT and SLT colleagues do not have responsibility for education provision in their service spec, so would not input into any EHCP's except at initial assessment stage. In the borough next to ours no nhs therapy teams input into ehcps except at assessment stage for first EHCP, its all done by a private company commissioned by the LA. Every area varies.

It's a messy system which professional often struggle to navigate, so I'm sure it's often pretty impossible for parents. And I'm not defending it or saying it's OK, but just explaining why the nhs may not be the ones responsible for writing these reports in many cases. Often the LA has to commission private therapists.

When you say the nhs have refused her therapy, have they rejected the referral? Or are not providing the frequency/type that you feel she needs?

No, she doesn't need to be specific on any of the above. You're just being nosy. That is private medical information, and it's a question about how to get a response from the relevant authorities.

Just checking on your ask here - you can't wait for review in 2 weeks as it's too urgent and needs changing sooner?

When LA unresponsive with me I did some digging and wrote directly to the director or SEND provision with the EHCP co-ordinator and other team members who had been blanking me on copy. I included details of all the ways I'd tried to get in touch. That got a response within an hour. It sounds like you have a very real reason to need an out of process change given a new diagnosis so they should at least discuss with you.

I'm also not sure from your question the nature of the change and whether it would require more funding or just an extra step in a process somewhere? For additional funding requests they should have panels every week or so where they can approve out of cycle requests. If your child is at risk of death I'd imagine this would be taken seriously though if your LA are anything like mine getting through to them to tell them this diagnosis and its implications would be hard.

I'm unsure on the NHS part of your question - are they refusing to provide therapy because they say it should be covered by EHCP? Or is this a separate problem on top of the EHCP challenge?

What health care provision are you wanting to pursue? You mention therapies, is it ‘just’ therapies or something else too? Remember health care provision that educates or trains is actually special educational provision and belongs in F with the LA, not the ICB, being responsible. That includes therapies such as SALT, OT, physio, etc.

You won’t get a formal letter now. That will come after the review meeting.
The AR is the process to amending the EHCP. Prior to the AR meeting, updated advice and information must be circulated at least 2 weeks before the meeting. If that hasn’t happened chase. After the AR meeting, the school must circulate a report within 2 weeks. Then within 4 weeks of the AR meeting, the LA must inform you if they are going to amend or not. If they aren’t, you get the right of appeal. If they are, they must issue the amendment notice and then finalise within a further 8 weeks. Then, you have the right of appeal. After the AR you can appeal the EHCP. If you appeal the educational parts, you can also ask SENDIST to look at the health sections.

then they have to either attend or provide a full report at the following points

• year 1
• year 5
• year 10
• year 12

This might be what your LA does, but it is not a legal requirement. Advice and information should be sought as part of every AR meeting, but they don’t always attend and the advice and information is rarely a proper full report either.

@scoopofmintchocchipicecream thank you - that’s very helpful and shows me what essentially I needed to know.

I’m about to start work so can’t respond individually to everyone.

I understand the variance on input to the EHCP etc.and the responsibility lying with the LA.
I’m not going to be specific about the team’s inputting just because it’s slightly detracting from the question of how to get the health section of the EHCP formally amended so that provisions can be allocated or sourced by the LA.

It’s my fault for complicating matters by referring to what is also going on with the NHS. Both points overlap but for now I need to know if it’s wise to proceed with the review - I didn’t realise that the amendment matter would be determined after review because no-one has explained it to me and her EHCP hasn’t been amended since 2023.

She isn’t going to die before the review or anything remotely like that and I don’t think I suggested that. Hopefully she won’t die obviously but she WOULD if it weren’t treated. Im not going into the details of that because that has nothing to do with updating an EHCP.

Yes, we provide a brief summary for every AR we are requested to do so in a timely manner. And full EHCP style reports at the points mentioned above as they are transitional points between key stages. And yes we only usually attend for the children who we are most concerned about.

Outcomes are usually set by key stage, so for a robust ehcp, this advice and outcomes should be reviewed and amended as necessary at each of these points.

how to get the health section of the EHCP formally amended so that provisions can be allocated or sourced by the LA.

I think you are slightly confused. The provision in the health care provision section (section G) wouldn’t be allocated or sourced by the LA. However, at least some of what you pursuing is actually special educational provision and should be in section F where the LA is responsible.

If you want the EHCP to be amended, then, yes, you need to the review to go ahead. The AR process is the route to amending the EHCP. The AR meeting is just one part of the AR process. Ultimately, many have to appeal to secure therapies in F, and if you have to appeal B&F, you can also request C&G are looked at.

@Bushmillsbabe the years you mention are not phase transfer years. Some LAs like to think they are, but legally they aren’t. For example, phase transfer reviews for transition to secondary should take place in Y6, not Y5. LAs who hold them in Y5 are acting unlawfully.

While your service may write full reports for phase transfers, legally, it isn’t a requirement, unfortunately.

Any changes to Section G need to be agreed with the ICB who commission local health services (and would be responsible for commissioning the relevant provision which is usually through an existing local NHS service). The ICB are represented by a Designated Clinical Officer or a Designated Medical Officer in your local area. Look at your local offer for contact details and you can send your query to them and they can advise you. First step is to get agreement at the Annual review that the EHCP needs to be amended.

Ah ok that simplifies things.

Yes, I'd proceed with the review and use that as an opportunity to raise the amends you want made. If they say no, then you appeal?

Maybe I'm still misunderstanding the ask.

Thank you all for the helpful replies.
I thought it was the ICB but they are stonewalling me.

If it helps without giving outing details- my child was born physically disabled so has always had an EHCP. Some difficulties arise because she doesn’t have a “diagnosis” that is. No one knows why she has disabilities and there is no overall explanation for her physical disabilities. There’s always been a wait and see approach but the medical professionals (not the therapists involved) have assumed she has a “static” condition- one that does not progress.
We discovered recently that this is not the case. Some specific therapies are required to help to get her through puberty before surgery. Surgery might not work etc etc.

that’s just the background- currently her EHCP is as if the diagnosis we recently had didn’t actually happen- so the LA told me school had to update the EHCP. School said the LA did. The NHS won’t contribute in any way to the EHCP and never do. I’m going in circles trying to find out who does provide the wording or the information (I have all the specialists letters that’s not the point). Currently all we’ve been asked to do is fill in a family contribution to the EHCP eg what do you admire about your child etc.
If I write the specifics of what her new diagnosis says it should but might not trigger the LA to amend the EHCP and THEN determine provision of care which is not just about school btw. I understand the education part relates to school obviously. The health and care feed into school, social care and health planning.

If those therapies educate or train, they need to be in F and the LA not the ICB is responsible.

The school doesn’t amend the EHCP. The LA does.

What should happen is:

1. Updated advice and information must be circulated at least 2 weeks prior to the AR meeting. Although if they are ready, some parents decide to forgo needing 2 weeks, especially for early reviews. This advice and information is unlikely to be full reports, I’m afraid. You can provide any evidence you already have.
2. Then you have the AR meeting.
3. Within 2 weeks of the AR meeting, a report must be circulated.
4. Within 4 weeks of the AR meeting, the LA must inform you if they propose to amend or not. If not, you get the right of appeal. If they are, they must send the amendment notice/draft/notice of amendment/proposed amendments (whatever the LA/you want to call it) at the same time and you must be given at least 15 days to comment on the amendments and state your preferred placement.
5. Then if the LA is going to amend, they must finalise within 8 weeks of sending the proposed amendments, so max of 12 weeks from the AR meeting. They may or may not have agreed your proposed amendments. You get the right of appeal.

For therapies, many have to appeal. Lots seek independent reports whilst appealing. If you seek independent assessments, they can feed into C&G and D&H too where relevant.

F isn’t only about provision in schools.

If you have the letters from specialists can you submit them to school and ask that they send copies to the LA along with the annual review paperwork?

@FrothyCothy - already done. Thank you for the response.
@scoopofmintchocchipicecream - thank you so much. You have been so very informative.
Ive been pounding the various bodies with reports and letters for weeks so they are all fully informed.
I think the LA here wants a review first - it’d be helpful if they could tell me that’s the process rather than just not engaging. And that’s fine. I really wanted the provisions to be spelled out before the review and with some specificity so I could get them into the plan rather than letting the LA just decide what to put in… if that makes sense.

The AR is a process. The meeting is just one part of that. The updated advice and information circulated is a crucial part of the AR process that is often overlooked. However, you are highly unlikely to get full in-depth reports, I’m afraid, and even if you did, they are unlikely to be watertight.

@scoopofmintchocchipicecream
They are though. It’s a spinal condition and x-rays etc. With Great Ormond Street consultants assessment and recommendations and things like that. It’s not like a debatable diagnosis or even prognosis.
I have done ARs since 2022 every year but this is a new issue. Which carries big consequences for my child whatever happens re therapy or surgery.
Other provision like SALT, dietician and so on is already in place and covered.
It’s the “big” problem I need to get in there so that local services must carry out the recommendations.

A report may medically be very thorough. But my experience is unless it's written in the EHCP format (abilities, needs, outcomes and a provision table stating input required, frequency etc) then it won't be included meaningfully into an EHCP, but just as a line in the introductory section 'X has recently been diagnosed with Y'.

@Bushmillsbabe
Thats why I was trying to get the amendment written - it needs to be more than just the x has y format.
i have 2 reports specifying what she needs but it’s getting the LA to put it correctly.
I expect I will have to appeal but at least if I know which order it goes in (AR then amendment) I know more than I did yesterday!!

You have misunderstood my post.

I wasn’t talking about the quality of existing evidence you have. I was talking about the updated advice and information sought and circulated prior to the AR meeting. Your existing evidence may be in-depth. Although, NHS letters/reports are often fail to cover needs, provision and outcomes in the right way and are often not sufficiently detailed, specified and quantified. The updated advice and information sought prior to the AR meeting, which is what I was talking about, is rarely a full in-depth report.

at least if I know which order it goes in (AR then amendment)

No. The AR is the process of amending the EHCP. Amendments are not made after the AR (other than via the appeal process, another review or reassessment). Amendments happen (or not) following the AR meeting, but the AR meeting is just one part of the AR process.

@scoopofmintchocchipicecream
Im not sure I understand what you mean by the advice before the AR (sorry if I’m being thick!). The NHS never have given advice in any way for the EHCP except the very first one - and then current advice re the spinal condition (so for instance one senior physio specifically wrote a 3 page letter - it isn’t in EHCP format but that has already gone to the LA.
That’s what my dilemma is - I can’t make the NHS do anything to contribute to the EHCP.

The AR process is a process. The meeting is just one part.

At least 2 weeks before the AR meeting, updated advice and information must be sought and circulated. See Reg 20. It is a step that is often overlooked or poorly completed unless time is allocated for it in the existing EHCP, but it is an important step.

Many have to appeal. As part of that many seek independent reports.

You can, in theory, request a reassessment of needs, but personally I wouldn’t. I would use the AR then appeal instead.

I'm so sorry OP, it must be incredibly worrying for you. Have you looked into whether your daughters condition has a charity who might be able to help? With the medical condition I have I have had support from a charity and among other things it also supports families to advocate for their children's needs and accomodations in school, and I just wondered if there might be something like that to help you? Really hope things get sorted for you soon 🌺

Does you child have a school physio, OT, SLT etc? They can write the reports, and divide it into health provision and education provision in the EHCP format. Once included into the ehcp, it should in theory go through the ICB for approval that NHS agrees with the provision stipulated before it's agreed, but in practice I'm not sure that happens much