Why is there no real help?

[sum12luv]

My son is 24. He has had a difficult life so far: became unable to attend school in Yr9, no qualifications, on UC (work capacity assessment states not required to look for work), chronic anxiety since childhood, used to have EHCP, but that was never pursued once he left education (despite my efforts to get it back on track), totally isolated, almost certainly neurodiverse (father and brother both diagnosed), but seems to be on endless waiting list for assessment.

I have provided the context above because this is the context in which his eating disorder has emerged and by which it is complicated. His ED is bulimia but involves massive overexercise (speed-walking for hours, often in remote areas) and purging. He lives with me. I will not give his exact weight, but he is underweight.

My problem is that I cannot help him, and I just feel his very real needs are not being taken seriously. I call the community mental health team. They phone him, He is referred to the ED Team. He may be unable to attend weighing and blood test sessions often due to his rigid routines, so the services end. I call the teams again, make GP appointments, a phone call is given in return. My son may attend a few appointments. The the service ends. There is no attempt to push further for assessment, offer help or even medication for the overwhelming anxiety, coordinate with OT or social services to see if there is any way that he can be helped to engage in society.

I apologise for this rant, but was just wondering if the mental health services and services for people with ED and complex needs is really so dire, or whether my son has just been unlucky.

When you say DS used to have an EHCP, was it formally ceased via the correct lawful process? Or is it still maintained but DS doesn’t receive any support from it?

Have you tried formally complaining about the ED service withdrawing when DS struggles to engage with weighing/bloods.

Has DS had a formal social care assessment? And you a carer’s assessment? You don’t need another professional to push for these. They are something you could request directly from social care yourself.

Thank you for the response. The EHCP was issued when DS was in what should have been Yr 11. He was trying to access a PRU as a medical case (as opposed to behavioural). It was last reviewed when he was supposed to start a college course at 16. He stopped attending the course after two days, and the EHCP was never formally stopped, but never reviewed.

I think I dropped the ball a little because his older brother and father were both in mental health crisis.

The ED services claim my son does not engage. However, this is also claimed by the mental health team, who know that 'engagement' is difficult due to my son's very rigid routines (many of which are connected to the ED)

He had a care assessment and it resulted in a very vague document that really said very little at all. His social worker saw him once or twice, and then a letter came to say they felt he did not require their services.

Are you claiming PIP for him and carers allowance? If not, then it would be worth applying as you could use the money to pay for private psychiatric help. No point unless your DS will engage with that though.

If the EHCP hasn’t been formally ceased, request an annual review from the LA. The EHCP can provide more support, including therapeutic support. This way you aren’t reliant on the NHS offering.

If DS can’t engage, the support needs adjusting so DS can get to a point where he can engage. I would complain about that.

I would request new social care assessments. Then push for support if you/he are refused support. Unfortunately, this is another area where you have to fight for support.

Does your son want help with the ED does he see this as a problem? What support do you want for him, what does he think of your view.

Unless he lacks capacity they cannot make him engage with ED support. Until he is willing and able to engage then it is not a good use of his and their time and resources. There is obviously a lot that needs to be done to help your son but I think it’s way upstream of ED services at this point - unless he is in physical crisis. They cannot assess him if they don’t know his physical condition (weight and bloods).

This.

MH services have a horrible and not entirely in the past history of coercive and social control. It is right that if people have capacity and don't want to or won't engage, that that is respected even if it is unwise. That's what the mental capacity act is for.

One of the reasons all NHS services struggle is because of DNAs of 10-20% and then also people attending irregularly and not engaging which takes away resources from others who want the services.

Your thread title is misleading as there is help available, your DS won't engage with it.

won't engage

Far more likely to be can’t engage and need a different approach and adjustments so he can get to a point where he can engage, rather than won’t.

Possibly.

But we don't have an NHS system that has the money to spend endless hours trying to figure out if that's the case and provide a bespoke service for everyone which even if we did, would still likely not result in the person working with services because of the reasons they didn't engage in the first place.

If you want a bespoke service you need to pay for it privately.

What help do you think he would respond to? I can see you have tried so hard to get him help, but what would work? What are they failing to do?

I’m sorry to say I agree with much of what has been said. Your son doesn’t engage so if services are offered, they are withdrawn. You say he doesn’t engage due to his illness but the system doesn’t differentiate.

It must be really difficult for you to watch your son being unwell and of course you want things to improve-I do feel for you. Have you looked at support for you, to see if you could be doing things in a different way? B-eat are great for this. My point would be, you may be enabling this cycle so you need to do something different-if nothing changes, nothing changes.

This is why I suggested seeking an AR of the EHCP since it hasn’t been ceased. Provision in excess of what is typically available on the NHS can be provided. Although even the NHS should be making reasonable adjustments to enable someone to access their services.

If the adult needing reasonable adjustments is asking for them under equality laws.

Not their Mum, who wants something that the adult may not.

Reasonable adjustments don’t have to be reliant on the disabled individual asking for them. For one reason or another, many can’t make that request or aren’t aware the reasonable adjustments are required.

The equality act outlines reasonable adjustments as challenging barriers to access that would adversely effect people suffering from disabilities from accessing those services that would not effect people who were not disabled.

The key word is 'reasonable' so providing wheelchair access, appt letters in larger print and more simple language.

Not putting in more resources to try and engage someone who has repeatedly demonstrated they don't want the service.

Which is the case here.

It's about equity in access to services not an enhanced service that people who don't have a disability would not receive.

Reasonable adjustments absolutely can involve adjustments how healthcare is provided, including by providing a different approach if necessary. Nowhere have I said it is about providing an enhanced service.

What would help? You mention meds - would he take them? Unfortunately even with a diagnosis of neurodiversity, any further programmes offered by social services/OT/etc are going to require him to want to engage to a certain extent - if he isn't going to, they're unlikely to follow up just because of how stretched they are.

So I think the best thing is to decide what he can do (and is willing to) and try and present that - so for example if he can't or won't attend weigh clinics at certain times, get him re-referred to ED services and then make clear with them that he needs appointments at times he can/will attend. If he will accept medication, get him to go to a GP appointment and ask for medication for the anxiety, in the hope that might help him engage further otherwise. If he'd work better with in-home appointments, find out if they're an option, etc.

Also speak to the ED charities like Beat, who might be able to better give you a path to follow/the right things to say to trigger support. Ultimately, if he doesn't 'want' (and I know it's largely the ED speaking in these cases, but) to engage then you can't force him.

OP is wanting an enhanced service and a different approach.

Her DS doesn't want the services. Which is why he keeps being discharged.

An enhanced service and a different approach are two different things. OP wants a different approach. That isn’t unreasonable of her.

Not being able to engage isn’t the same as not wanting support. For many, it is the former rather than won’t engage.

It's unreasonable of her because it isn't about, or for her.

Do you think adults should be forced to engage in mental health services because their Mum wants them to?

And that mental health services should ignore the wishes and actions of adults and force themselves on adults because that's what the Mum wants?

He's 24. For all we know, his Mother is claiming things that aren't true.

No-one has said OP’s DS should be forced or that it is about her or for her. It is about adjustments to support so DS can engage.

As I said, the EHCP route, where he is still considered a young person, can provide support in excess of what the NHS typically offer.

That wasn't what the thread was about. The thread was about OPs DS refusing to engage and he doesn't have any diagnosis at all.

And he hasn't in any way suggested that adjustments would make it more likely that he would.

Because he doesn't want to.

His Mum might want him to, and you might but that doesn't make it true and you haven't made any suggestions of why he's possibly being discriminated against because of a possible disability and what adjustments should be put in place other than taking about his possible rights if he did have a disability and did not want a service or vaguely didn't but still...

Respect him and don't project whatever fight you made for you, or your DC whether they wanted you to or not.

I am not projecting anything . I haven’t disrespected anyone.

The OP specifically mentioned her DS’s EHCP in her first paragraph. The thread was about OP’s DS not receiving support. That includes support via the EHCP. It doesn’t matter her DS doesn’t have a diagnosis. Support is based on needs, not diagnosis.

It is far more likely to be unable to engage rather than refusing.

Sadly, many YP with SEN are discriminated in healthcare because of their SEN. You might not have come across it, but it is not uncommon. I suggested adjustments via changing the approach. What approach would depend on his specific needs and need assessing. I also suggested pursuing support via the EHCP.

EHCP. Education is the first word.

It covers when the person is in education and additional needs they may need to access education.

And can go up to age 25 if the person is still in education.

It doesn't mean anything outside of that.

It doesn't mean needs to access health services, or employment or just going to the shops for instance.

Nothing OP has said suggests her DS is being discriminated against in his ability to access healthcare. She's just said he doesn't want to or she's assuming it won't work because of his preferences but at no point has he said to her that he wants help, or thinks there is a problem or he didn't engage because it didn't work around his routines but otherwise he would.

OP needs to accept help is available and he isnl't being discriminated against and so do you.

Also, it's hugely ableist of you to think people with challenges, differences and disabilities must not have the capacity to decide what intervention and support they want.

OP’s DS’s EHCP has not been formally ceased. Therefore, an AR can be held and provision pursued via that. That applies whether he is attending a formal education setting right now or not.

It is Education, Health and Care Plan. Certain mental health provision is considered SEP, rather than HCP, as per section 21 of the Children and Families Act 2014. Same for SCP which educates or trains. PfA absolutely is part of EHCPs and is also SEP. Your understanding of SEN law is incorrect.

EHCPs can continue until 26 in some cases.

If the service is not making adjustments to how they provide health care so he can access support, then they are discriminating against OP’s DS. You might want me to accept things, but, thankfully, I don’t have to do what you, some random on the internet, says.

Also, it's hugely ableist of you to think people with challenges, differences and disabilities must not have the capacity to decide what intervention and support they want.

I haven’t. Nowhere have I posted this.