Ongoing support thread?

[SouthWestmom]

Shall we have one?

It's so difficult to deal with.

Anyone raising a child or young person with mental health issues who wants to just check in?

Hi all. Haven't gone through all the posts, I'm sorry. Sat at my laptop trying to work from home, after seeing my kid leave the house for school this morning white faced and panicked. Her OCD mounting by the minute, crawling on the floor to touch corners of the room before leaving the house. I'm crying. It's just her and I - her Dad is very involved but is insistent on just using the school counsellor for her treatment. She told my DD last week that she was "odd" and her behaviour "not normal". Wtf?!
Shall I go against my ex-es dictate and use my private health insurance? Do we need to wait for her letter for the GP?

@1stepforward2back

I would 110% overrule your ex on this. Not seeking appropriate treatment is neglectful. While school counsellor's can be brilliant a) they aren't all, and b) your DD needs specialist MH support, which the counsellor can not provide. Your ex needs to understand the sooner your DD receives specialist help the chances are the less help overall she is going to need. Burying his head in the sand isn't going to help.

So yes, I would either use the private health insurance or go via CAMHS. Some private insurers &/or HCP require a GP referral and others don't. Just as a side note for all of NHS CAMHS failures not all private child MH care is better, or even as good. I have heard some appalling things so I would research thoroughly.

Hi all, glad to have found you! I have a daughter (16) with OCD, severe anxiety and possible ASC (although diagnosis takes forever...). It is hard.
She self harms and has been for almost 2 years now. I find this really distressing (although obviously don’t show it to her, well as much as poss). I have had to stop work now to look after her - she is on a part time timetable and has appointments every week with camhs, nurses and school wellbeing. It’s full on.
Last year we had nothing really in the way of support and it has taken some pushing and shoving to get here, although still lots of hurdles to negotiate. Next is psychiatrist and paediatrician. Really hope they will help with the ASC diagnosis pathway.
Not much to add today, but I will check in soon and see how everyone is doing. Sorry that we are all in this boat

midcenturylegs I have had a fairly good experience for my daughter with camhs, however friends of mine using the same camhs have found it next to useless. I think it really depends on the therapist you get. Do try it though as it can be so helpful. Have you tried Youngminds? Look it up online. Their parent helpline is excellent and I even got a phone call with a psychotherapist to give me advice about support. They are great with school and legal frameworks etc so really worth a call. Also don’t forget your gp. It is really worth going to talk to them by yourself and then booking in to go together. They can make referrals to camhs and psychologists and oaeedeatrics etc.
Good luck and keep talking about it - remember that you need support too.

@1stepforward2back @devoncreamtea thank you for your advice - flowers and un-mumsnetty hugs to you both.
I've agreed on a psych (private) with the ex for my DD. A huge and massive relief, whole process will start after half term.

@devoncreamtea - my work has been suffering horrendously- actually taking time off sick for myself at the mo. It sounds like you are doing a great job of managing things and you've a few big positive steps happening with seeing the right people

I think it's really patchy, and sometimes you just get left dealing with really tricky situations you aren't equipped to manage

@SouthWestmom
I hear you. DD talking tonight about feeling "unreal". The psych she is going to see deals with dissociative disorder. That makes sense re the touching stuff & OCD behaviours. For now I am just holding her, telling her her and I are real, getting her to cuddle her cat. It's all I can do right now. On hols in France next week to CentreParcs for half term hols with a group of families - am hoping she'll be able to relax and be a kid with the water slides etc x

That's so scary for you to deal with. I've read back over the latest posts and it really strikes me that early intervention doesn't happen - where is the money going? I think camhs should be redesigned. More group sessions which would also triage. If you had a drop in type set up for parents and young people who thought they had depression/were self harming etc you could still avoid mid diagnosis but also help people feel supported and triage the ones who might need support 121.

midcenturylegs so sorry that you are both experiencing this
Dissociation is really scary for everyone. My daughter has episodes like this too. It sounds to me like you did everything you could do to comfort her, it is a really brilliant sign that she is leaning on you and wanting your help.
In terms of work etc. Have a think about child DLA. DLA isn’t awarded for diagnosis of disability, but for the extra levels of care and in our case supervision, needed for our children that is over and above what you might expect for another child of their age. So while she is experiencing these distressing episodes and seeing a psych and struggling in school(I assume, sorry) you might get a bit of help. If she is awarded middle or higher care, you can apply for carers allowance. You can work a max number of hours or earn up to a certain point on it, but it might make things easier for you to be at home with your Dd? CAB helped me. I haven’t heard anything yet and it may not come to anything, but after 2 years I just couldn’t keep going.
Hope that helps a bit.

midcentury I hope today is a little easier for you both. Nighttime can magnify problems and make them so much harder to cope with.

devon I find the self harm distressing too.

It is well worth applying for DLA. DS gets it. If you are turned down initially asked for a mandatory reconsideration. If you get tax credits and your DC get DLA you get an extra amount as well.

Work wise there is parental leave. If your child has a disability then you can take parental leave as individual days if needed.

The other thing you should ask for is a carers' assessment.

Hi all .

We have been discharged and been left with pretty much nothing for the last month. I would be very reluctant to agree to hospital ever again.

Dc is managing to talk to us so that's a plus.

Sorry to read some of your scary stuff going on.

@SouthWestmom just checking in.. I am sorry to hear about your situation, you must be feeling devastated. Thinking about you x

That is shocking Neouf. Why wasn't there a post discharge plan put in place before discharge? Very poor from CAMHS. Talking is a huge step.

Midcentury, I hope your holiday wasn't too stressful for you of DD, and that going back to school hasn't been too overwhelming.

DS has been asleep since 9.15 which has allowed me to catch up on paperwork and phone calls. Today is day 13 after sending the LA a pre-action letter and so far we've not had a response...
With the help of a MN'er I have, however, found a solution to there not being a suitable school. Just got to get the LA and setting to agree.

I spoke too soon, we have been invited to a meeting.

Neuf you should have a discharge letter stating the support community care (CAMHS)should be providing. If this is not being provided contact the hospital and tell them.

Hospital know. Haven't responded to my informing them. I can't force them to provide something no matter how much I complains

1step does that mean things are more positive?

There was a section 117 discharge plan put in place (no one told us about 117 care, had to find out he was entitled to it myself, but they'd ticked the box). Doesn't seem to mean anything really.

Have you written to the director of children's services and the chair of the CCG Neouf? The LA is also liable for the implementation of section 117. Maybe copying in the head of CAMHS, head of the inpatient unit and the CEO of the CAMHS trust (and CEO of the trust the CAMHS unit is in). Sometimes the heads of services can resolve issues that have previously been ignored or they themselves decide to ignore you.

If you have already complained to the CCG and LA the HSO and LGO respectively can help.

Have you had a carer's assessment?

I hope so Neouf. I hope the LA aren't just using the meeting as a delaying tactic in order not to provide home tutoring and that I can convince the LA and the setting of my plan.

I don't know I feel like I've just gone and done the wrong things really. The hospital aren't interested. I feel like I need to wait and see what happens now - it's hard because people are in touch but just saying sorry and they will try x, y, z. So I feel bad going behind their back.

You haven't done anything wrong. It's the shit system that leaves you doing their jobs while trying to be mum too and the unforgiving relentlessness of MH problems.

Don't worry about going behind people's backs, you have to do what is right for you and DC. They aren't the ones coping 24/7. Being in touch isn't enough to help you and DC, they need to provide too. Would an advocate help?

You aren't entitled to a carer's assessment until your child turns 18.

If he was in hospital for more than three months he should have been referred to social services and given a child social worker. Try contacting them. It was a social worker who enforced CAMHS to follow the discharge plan

Err, yes you are roseau The Children's and Families Act 2014 say so. I've had more than one.

Scroll down to the parent carers section

You can ask for an assessment from the disabled children's team and again they are required to assess your DC under Section 17 (11) of the Children's Act 1989.

I'm too tired with it all tbh. I just want to stop communicating with CAMHS and give up. My stress levels are through the roof.