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Does mental health count as special needs? Hoping Im in the right place at last...

45 replies

shanelle5 · 24/03/2014 20:10

So, Ive been looking for support in an increasingly desperate manner over the last week and this will be the third board I've tried. No luck in the teenagers board and limited reply's over at Mental health so Id be really grateful for any support and advice anyone at all could offer me, I really am struggling Sad
My DD aged 14 developed very serious mental health problems literally from feeling mildly down to a full on break down with psychosis within a week. I took her to the GP one day about 10 days ago, she was referred to CAHMS, they saw her, referred her to "specialist camhs" who then spoke to her and phoned me after to say she needed to see a psychiatrist asap. She had begun hearing voices and these were giving instruction, she was now a danger to herself and to others and has lost touch with reality. No diagnosis as yet, just a lengthy stream of appt's, the psychiatrist put her on 2 lots of meds, Respiredone and Prozac.
I have become her carer overnight as she has been told absolutely no school and not to be left alone. Im with her 24/7, including sleeping with me, she is terrified and confused and unable to be alone for even long enough to shower/bath.
I am a single Mum with 2 other children, 1 of whom is a very active 15 month old and even though its just been a week, Im already finding it so hard to cope Sad
I dont know how best to support her, I feel scared and uncertain of her future. I am in need of help physically in able to keep up with the school runs,housework,cooking cleaning. I am in need of mental support to get my head around the way everything seems to have changed and my loss of the lovely little carefree Girl I had, who is unlikely to get completely better and needs 3 years of care on the "early intervention for psychosis" programme, and I need financial advise as I cannot work now due to caring for her 24/7, I honestly think I may lose my home over this, its all so scary..I have phoned social services today to ask about a carers assessment and they passed me on to 3 different departments then back to CAHMS, I asked for her to be put on the CPA (care programme approach) as I have found out myself just by google that this would get her some support, and in turn me but have come to a dead end with this too.
Sorry for the ramble, and genuine thanks to anyone still reading.
Help, hand holding and a virtual hug needed badly please Sad Sad

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itiswhatitiswhatitis · 24/03/2014 20:16

Sorry to hear you are going through such a frightening time OP. I have no experience of this but in terms of finance it would be worth applying for DLA for your daughter and if successful you can also apply for carers allowance. www.cerebra.org.uk/English/getinformation/guides%20for%20parents/Pages/DLAGuide.aspx is a useful site to use when applying.

Wish I could offer more advice

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Ineedmorepatience · 24/03/2014 20:19

Hi shanelle, I am sorry to hear about your Dd Sad. I have no experience of such significant mental health issues. I am however sure that you have come to the right place. I am sure someone will be along who knows more than me.

Welcome to the board, over her we give honks more than hugs as we are all flying together and supporting each other through many varied issues.

Hope someone can help you Smile

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shanelle5 · 24/03/2014 20:25

Thank you! It doesn't matter if you cant help or advise as such, I just feel so isolated and alone tonight, that I needed to chat and offload really.
That link looks helpful itiswhat Ill bookmark that for later but from what I hear, MH is increasingly difficult, nigh on impossible to get DLA for Hmm

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Ineedmorepatience · 24/03/2014 20:33

Have you heard of Young minds? They are a charity who help young people with MH issues.

//www.youngminds.org.uk/

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itiswhatitiswhatitis · 24/03/2014 20:49
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itiswhatitiswhatitis · 24/03/2014 20:51

To be honest it's all about getting the wording right. I found the cerebra guide invaluable when filling out the forms as it takes you through each question and helps you to think about exactly what care you give/is needed, lots of stuff I probably wouldn't have thought about without it.

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AgnesDiPesto · 24/03/2014 21:05

Look up tax credits. Do a financial assessment on entitledto website. Apply for Dla (if you ring up for the form it's backdated to the date you rang not the date you finish the form). See if you have a local carers charity who can help you fill out forms. Contact a family website have useful leaflets on entitlements. Email the council complaining about refusing to do carers assessment and ask for this decision to be reviewed, they should not have passed you back to Camhs. Say you will go to local govt ombudsman if they will not even do an assessment as they cannot refuse services without doing the assessment. Speak to your mortgage co, employer etc and see if you can negotiate anything. You can take 3 months parental leave unpaid but at least may give you chance to hold job open a bit longer while you see if you can carry on. There is a childcare act which allegedly puts duty on councils to ensure childcare is avail. Involve your MP if you don't get anywhere fast with social services. Ditto make a complaint about NHS not putting you on pathway. Loads of govt stuff about keeping carers in work etc. If and when your dd can manage some schoolwork the council is obliged to provide home tuition etc. Can anyone at school help with the school run, you may be pleasantly surprised how people rally round. Out best support came from other parents at school when my youngest developed high level needs.

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AgnesDiPesto · 24/03/2014 21:07

And see if you have a homestart charity locally given you have an under 5. Or even a local college childcare course sometimes have people looking for placements and can be an extra pair of hands.

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shanelle5 · 24/03/2014 21:13

itiswhat thank you again for the links, they look really helpful.
Agnes thank you! Some great advice right there. My question is Im not sure it IS social services who are the correct people to do the carer's assessment, if I knew for 100% they were the correct dept to access this help Id hound them a bit more! Does anyone else know for definate that it IS a childrens services/social service job?

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PolterGoose · 24/03/2014 21:16

This reply has been deleted

Message withdrawn at poster's request.

PolterGoose · 24/03/2014 21:25

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shanelle5 · 24/03/2014 21:27

Am I right that you cannot apply for DLA until they have been unwell for 3 months minimum? Just had a look through those links and that is what one of them says.
I know its not all about the finances, but with all the other worry about her getting well and her GCSE's, and trying to keep her safe etc, I just dont need to be worrying about finances and not making my rent payments. Really am glad I posted, some great and much appreciated advice. Brew gladly accepted!

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itiswhatitiswhatitis · 24/03/2014 21:36

Yes I think they have to have needed help for 3 months. I would still download the forms and gather your info now so you are ready.

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quietlysuggests · 24/03/2014 21:44

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shanelle5 · 24/03/2014 22:00

quietly she has been asked that a lot, but definitely, definitely not. She's a very young and conscientious 14 year old who just wouldnt. (Cant vouch for my less so, 18 year old mind! Blush)

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Hardtothinkofanewname · 24/03/2014 22:08

Very sorry this has happened. I can't really offer any advice, but wanted to say my DD has very severe Tourettes. She has had a good response to Risperidone.

It can be scarey to have to put your child on these meds, but I have only been relieved that they have helped.

I hope you can find someone to talk to in RL, if not keep posting here and make sure you're taking care of yourself.

I do believe the prognosis is better for these illnesses now, especially with rapid and comprehensive treatment.

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MariaNotChristmas · 24/03/2014 22:11

This most certainly counts, so you're very welcome here.

You're entitled to social services 'assessment' as a carer, but any actual help for you is discretionary. Which means nonexistent, mostly. However, all is not lost. They have to assess 'children in need' too. Providing you can bring yourself to say you can't currently guarantee your 15m old's health and safety, you'll probably get some care allocated.

This is probably true, as you can't physically be hands-on to both of them at the same time, especially 24/7, and your middle child can't be relied on to look after him/herself, let alone anyone else (this is a massive assumption based on my own middle dc Wink)

If the low mood leading up to the breakdown was significant, you can apply for DLA now, as that would count for the three months.

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MariaNotChristmas · 24/03/2014 22:17

She might get completely better.
Albeit with meds, either for a while, or long term

That's the whole point of 'early intervention in psychosis'
Doubles (full) recovery rates.
The people who had the old services often didn't. Which skews the views of 'our' age group, as we saw what happened back then.

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MariaNotChristmas · 24/03/2014 22:19

DLA is hard for adults to get, dc with MH issues are usually awarded it .

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bochead · 24/03/2014 22:30

Yes her illness does qualify as a disability if it continues more than a few months, no it doesn't mean her life, (or yours is over) and she can still go on once stabilised to gain a great education, have a good job, go to Uni etc, etc even if your worst fears are realised and it is the beginning of a long term illness.

A person CAN have just one psychotic episode (especially when those female hormones are going loopy) and never ever have one ever again for the rest of their life. The most common occurence of this in women is post birth, (the other high risk times are puberty and menopause). It's too early to diagnose anything more than that accurately, and shows you have a sensible shrink on side.

Your other children absolutely have the right to be kept safe and harsh as this may sound, the safest way to achieve this for everyone is for her to go to an inpatient unit that know what they are doing. Cognitive behavioral therapy can be a real aid for her in recognising the symptoms of future episodes creeping up on her before they get to crisis point (so they can be nipped in the bud). At 14 she'll have enough maturity and self-awareness to make this a really valuable part of her treatment. Insist this is part of any inpatient programme.

YOU should also be able to get high quality therapy sessions to help you learn to cope with what can be a very scary condition to have to parent. If you aren't demand it! I'd also demand a community mental health nurse to come out and visit - for some reason these seem to be the go to people to get stuff done in the very, very confusing world of cahms!

This can have no connection with drugs like cannabis whatsoever, in some individuals it really is brain chemistry and a question of sorting that with the right meds just like you would for a diabetic.

If she becomes really scary then take her to A&E by whatever means necessary - do not bother with SS as sadly they don't have the injectable meds to sedate her safely to hand. She can also be sectioned by the police if things get out of hand at home in an emergency. This is extremely distressing, I can't lie - but does tend to lead to the NHS pulling it's finger out REALLY sharpish. Sectioning means being kept as an inpatient - but in the case of children you are allowed to visit LOTS, and they really do try and pull out all the stops to make it home from home and as pleasant an experience as it can be for someone who may be feeling very confused.

I've tried to describe the good, the bad and the really ugly for you as having the info to hand and not needing it is better than needing it and not having it iyswim.

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Redoubtable · 24/03/2014 22:40

shanelle, this is not something that I have any experience with so I cant offer constructive advice. But I didnt want to read and run without posting.

The advice above from regular posters all sounds helpful, and I hope it has given you a track to follow. Good luck to you and your DD

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Selks · 24/03/2014 22:40

Care programme approach is not implemented nationally and so may not be used in your area. It's used throughout adult mental health services but less so in CAMHS. There should be some provision for you to be offered a care plan or treatment plan however.

But more than that my concern from what you are posting is can you manage your DD at home....if you are seriously concerned that it may lead to hardship even loss of your home then I would consider whether you can actually manage this and maybe the best place for her if she is severely unwell would be in a children's mental health unit for a while so that she can be effectively treated and recover. I am surprised that this has not been offered to be honest and I have seen young people less severely ill than your DD have a voluntary inpatient spell to aid recovery. If you told CAMHS or whichever service is providing care that you cannot safely manager her mental health at home then they would have to consider inpatient. It might sound alarming but it may not bee for long and it may be the best option. Do keep speaking to CAMHS if you are struggling.

By the way there is a Child Mental Health forum on here where you might find more support. Good luck and I wish your DD well.

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bochead · 24/03/2014 22:53

Sadly the waiting lists for inpatient units for this illness in this age group have always been miles long - in part due it's relative rarity (no point sending her to a unit without the specialist skills needed from a clinical perspective).

That's why I included the info on how to "queue jump" if the OP gets truly worried about everyone's safety.

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thornrose · 24/03/2014 23:00

I'll give you a virtual hug ((( ))))

I haven't been where you are but I have a 14 yo dd who has had some MH issues related to her AS. I hope the advice you have been given helps you Flowers

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AgnesDiPesto · 24/03/2014 23:04

If it's rent instead of mortgage you should get housing benefit. You should get middle or high rate Dla. We get middle rate for child with diabetes so psychosis should def be enough. It's regular care throughout the day. If you get middle rate or above you also get carers. It is disabled children's team at social services you want. Steer clear child protection.

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