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

[shanelle5]

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
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
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

Hi

The MHT you are under should give you a carers assessment, when I was really bad they asked my partner did he won't one.
It's very very early days for meds, BUT she may have a really good reaction and feel better in days or and be aware of this they may NOT be right for her and need changing to another drug. But time will tell anything from days to months!!!but psych will know but don't be rushed as SOME just throw drugs st you easily.

How does your daughter feel about going into hospital, would she be willing to go?. As said you have a young child who needs a lot of attention, so it may give you a break till she gets stable. Then again visits to hospitals can be stressful and exhausting, and she may ring you telling you so wants to come home. Just trying to give you more info.

As regards DLA, as somebody else mentioned she was building upto this over months it hasn't just happened overnight. So get the forms and get the MHT to help you fill them in, get doctors, psychs,therapist to do letters and send them with the forms. I agree it is the words you put that counts, do it on what she's like on her bad days/nights. Have a look on work and benefits site some useful info.

If you rent your house the the council wil pay your rent, if you become her carer. You will get carers allowance plus income support (I think) or somebody will put me right.

Really feel for you/ your daughter as it's very scary I'm 56 and I had depression badly and that was hell.

Hope she improves quickly.

Bochead, there's not always a waiting list, at not least in the area I work in. But your advice is very sound re going to A&E if necessary.

Oh my gosh, got up this morning after a very sleepless night to find all these lovely messages, Im so grateful! There is some brilliant advice here, will collate and make notes to use later but just wanted to thank all who posted.
Im going to ring CAMHS later and ask for a care plan and start making an attempt at the DLA form which looks confusing but someone early on posted a very good link or 2 that I can use. Especially great to read that positive mention of respiridone. Will be back

Ok - she seen a psychiatrist - this is the first step to getting more help. A psych will be able to put things in motion very quickly - opening up a CPA plan and giving you access to a CPN or social worker. Both of these people can organise a carer's assessment. But these are all long term things and you need immediate help now.

You can phone the duty line and tell them you cannot cope. I think that she needs to be admitted if you are unable to leave her alone and it is having an impact on your family. Do not worry that she does not yet have a diagnosis - that is a very long process - what is most important at the moment is her care needs. Tell them your daughter is a risk to herself and others - it sounds terrible but you need help and you have to be really cavalier about and detach your emotions - you are not a psychiatric nurse and do not have the specialist skills to deal with this.

Do not despair about the future - the drugs and therapies they have now are amazing and once they get the combination right your daughter will start to manage. If I don't take my meds then I am also a risk but when I take them I am able to live a relatively normal life with some adaptations.

Call CAHMS and ask to speak to the emergency duty work. Good luck.

I mentioned this on another thread recently (apologies if you've read it twice) but please think about whether she has taken any medicine, either prescribed or over-the-counter, which could have triggered this?

A few years ago DS had a very similar experience to your DD. Hearing voices telling him to kill himself 24 hrs a day / suicide attempts etc. We spent a very long time under the care of CAMHS and like you I thought he would never be able to have a normal life again.

As it's the beginning of hayfever season, she hasn't started taking medicine for that, has she? DS' problems were a side effect of the prescribed anti-histamines he was taking. If you met him now, you'd never have any idea there was ever a problem.

Sorry for hijacking if this is not relevant for you. We were in such a dark place, but everything is now fine & I hope it ends up being the same for your DD.

The other place you can seek support is social services. They can do an assessment - taking into account risk to your daughter and risk to her siblings- and possibly provide some respite. In not dissimilar circumstances we have been given 6 hours a week respite for each of our two children. Not huge but even this amount does make a difference. Luckily, for us ds2 is a bit more stable at the moment so things can improve. If you have a crisis and can't get an emergency appointment with CAMHS got to A&E and they will get a duty psychiatrist to see her then. Inpatient beds are very few and we were told if admitted then the bed could be anywhere in the country so also be aware of this.

My elder brother was sectioned at 20 after years of psychosis. I can honestly say it was the best thing that ever happened. His illness came in slowly but no one really helped and we didnt have a clue about mental health.

Once he was sectioned, he was diagnosed within a week. Meds were put in place, psychiatrist attached etc etc. he came out a more stable,albeit slightly she'll shocked person. But he was relieved having been so scared up till then. Contrary to the movies, I found the ward sad and tender. You could feel the vulnerablity of these young people for whom life had thrown an unfair hand.

He's super stable now, we've mourned the boy that was and adore the man he is.

I guess I'm posting to say - that your worst fear may be for your daughter to be sectioned - but it was the best thing for us- it was the key that turned the lock. It was heartbreaking.

You definitely need to ask social services for an emergency core assessment of your daughter's needs. Please do it tomorrow!

Hi, and thank you all again for posting! I got some great advice and have been phoning round trying to put it into action, but mostly its great just to feel a little more supported and not so alone
Well SS have been awful, I phoned them and was passed between different departments (around 4) who each claimed it was not down to them to do care assessment and in the end when I did get hold of the correct team, she said it sounded like I was coping well with my 3 children, breezy slap on the back as they are all fine and cheerio then! I got the distinct impression they didn't want to help and as they didn't consider my other children to be at risk, (to be honest I was too proud to push that one and say I couldn't cope) they just felt it wasn't anything they dealt with.
But I do have an appointment today with the psychiatrist to have a meds review, which I will actually be using to get a bit stroppy and insist on some proper help and support. Ive also booked an appointment with my awesome Dr for after incase I dont get the answers/response I need to follow up and as back up.
Ive also phoned the local educational welfare officer as some lovely Mummy advised me to complain that she was being failed and would someone please contact the school to arrange this meeting for long term education planning? Not that this is a priority just that all in all we have been sent home and left by all departments so I just wanted to remind people that she is here and deserves some kind of plan!
I didnt get very far with them tbh, he just told me to phone the head teacher and ask for a meeting. I said that not my job really, Im here to be her Mum and got enough on my plate without chasing up people responsible for her education. If it were the other way around and she was truant or late etc for the last 2 weeks we'd have had them on the doorstep by now it sucks
Any further advice or pointers for my meetings today would be gratefully received....And thank you

Good idea poulter Its harder for it to be ignored that way, and maybe if they can see that you've CC'd all concerned it may be the shove that they need. Shame it has to be so, but needs must!

We found a letter to the director of children's services worked in getting social services involved. We also got everyone involved with my child: school, CAMHS, SEN team, police to make a referral. I do think it was the veiled threat that if anything happened to anyone in our family they could no longer claim ignorance of the situation was the thing that actually provoked action.

How did the appointment go? Hopefully you have some more support.

If you haven't had the appointment then insist on being given a key worker who will be able to give you practical advice (eg how to access the crisis team, help with medication). The only real advice I have to offer is about risperidone - make sure your daughter has regular blood tests on this drug as it can cause prolactin levels to rise and that can stop her periods - it's not really the first line in treatment for women who menstruate - also it's really sedating but that will help your DD as it will help her relax?

Don't be too proud to ask for help - in fact demand help - mental health is so underfunded at the moment that the quickest way to get treatment is to shout the loudest.

Appointment went OK thank you. Psychiatrist looked a bit taken aback by my apparent bolshiness saying I needed more (any) support and wanted a carers assessment etc. Again pass the buck and referred back to SS so no luck in actually finding someone who seems to be responsible for doing this! Says she will try to get hold of the school again to get an appointment sorted and slipped in the conversation that Early Intervention for Physios is a long wait to this is going to be a sllooooooowwww process.
So another week gone by and still no help forthcoming.
BUT on the very good side, DD seems to be doing better now the med's have kicked in The voices and other symptoms have not gone or tailed off but she is much more able to cope and less distressed. It seems that the rispiperdone makes you not give a hoot! She is sleeping better on it, and has manged the last 2 nights in her own room (first for weeks) and has also had 2 baths alone so they are definitely working and no side affects to speak of so far..
Will be phoning SS first thing Monday to start the seemingly impossible task of getting a carers assessment again!
Thank you for thinking of me, and the support, its been invaluable

Well done shanelle. Keep practicing the bolshiness.
The squeaky wheel gets oiled and all that.

Shanelle, just to say that CAMHS weren't 'passing the buck' about the carer's assessment - it is and always has been the responsibility of the local authority to do that, not CAMHS.

I'm not trying to dissuade you from pursuing that, but what do you want it to achieve? Do you have any specific requirements?