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Hi, my name is TJH_Fields69! Daughter transitioning to adult services

TJH_Fields69

Hello there. I'm not sure how much I will use this resource but thought I should sign up, I am naturally quite private but there comes a time when everyone needs to vent. My daughter, currently transitioning to adult services, has been under S-CAMHS for a number of years. She was prescribed fluoxetine aged 14 and that helped her to get back to school. I believe she was capable of obtaining a few GCSEs at least, however lockdown hit in year 11 and that was that. We have always believed that she had more challenges than anxiety and low mood, possibly something related to PDA and/or autism. She was prescribed anti-psychotics for a short while, that was a huge mistake and she is off those now. She's in college, more by the grace of knowing the director than any application or enthusiasm on her part. At least she has an English GCSE to show for it. She's currently largely house-bound and is a big user of weed and lately more and more alcohol. We have a referral to GDAS so let's she if she engages with that, I believe she wants to. We're in the situation now where people must look at us and wonder why we're not doing more, but we've learned to stand back and support her when she needs it. It's also difficult to engage sometimes, we're in a cycle of getting figuratively slapped in the face followed by being asked for unconditional love and support. We've had too many no-holds-barred tantrums over the years, to realise what works and what doesn't. She has been "in the system" in one form or another since the age of 8, though in hindsight we can clearly see that there have been issues practically since birth, and the "terrible twos" didn't actually stop. We reckon we had a sweet spot around the ages of 5-6. Money isn't an issue - she gets hold of whatever she needs regardless of whether we give her "pocket money" or not. Practical parenting advice is all we would get from friends - "in our house we have clear rules", etc.

I'm not even sure whether this forum is the correct place for this. Anyway I've signed up and will take a look around. Cheers for now!

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TJH_Fields69

I forgot to say - there is no further official diagnosis yet, but her S-CAMHS psychiatrist recommended a book on Amazon around dealing with someone with Borderline PD.

SueHeath

Good morning @TJH_Fields69 welcome to our great group, i hope your well this Sunday morning,
sorry i have no experience with you daughters condition but it sounds like you've had a very stressful few years with her, coping with teenagers can be bad enough. Hopefully when the group wakes up, you will be greeted by other members. In the mean time, when your ready have a look around our great group, if you go into Categories you may find some chats in the family group. Any problems just ask, some one is bound to be on line.

poppy123456

Speaking from experience with CAMHS i never found them helpful at all. All they did for my daughter was refer her to a Phychiatrist, which didn't help in the slighest because she refused to engage with them and she would sit there in the room and not say anything.

If they suspect Autism is she still in college? If so then they can refer her for an assessment. If she's not then her GP can refer her. If she's now 18 then the waiting lists can be a couple of years at least, longer sometimes depending on which area you live. You could go down the private route which would be quicker but i have no idea on the cost of that.

When they suspected ASD with my daughter i was told it's a quicker process when they are under 18. Once they transition to adult services the process becomes much longer.

Is she claiming any disability benefits such as PIP or DLA? If not then you should look at claiming PIP for her. https://pipinfo.net/

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

If she's no longer in college you should also look into claiming Universal Credit for her and report her health condition, supported by a fit note within 7 days. This will start the work capability assessment process off. https://www.citizensadvice.org.uk/benefits/universal-credit/

https://www.gov.uk/government/publications/universal-credit-if-you-have-a-disability-or-health-condition-quick-guide/universal-credit-if-you-have-a-disability-or-health-condition

If it was me and she's still in college then i would push for them to refer her.

TJH_Fields69

Many thanks both. @poppy123456 they don't suspect autism, I'm pretty sure, just BPD at the moment. Aspects of your experience sound familiar - lack of engagement is going to hamper any therapy. My medical insurance will cover limited treatment I believe - anything chronic is frowned upon! Her CAMHS OT is still engaged, with no news of an adult OT at the moment, although she does have an adult psychiatrist and social worker now. The psychiatrist didn't do anything helpful, apart from write prescriptions every month.

She is living at home, so are PIP payments or benefits means tested, do you know? I assumed she wouldn't get anything unless she declared herself homeless, I'm 99.9% sure that she wouldn't get anything if we are means tested as a family.

poppy123456

It took me 14 years to get a diagnosis for my daughter and finally at the age of 17 she was diagnosed with ASD, learning disability and Social Anxiety Disorder. No one listened, no one believed me and all they seen was a "shy girl"

PIP isn't means tested so savings/capital and other income will not affect the amount she's entitled to. https://www.gov.uk/pip/how-to-claim It can take several months, possibly longer for a successful claim.

For Universal Credit, your household income will not affect the amount she's entitled to either because it will be a benefit she's entitled to in her own right. It's means tested for her so if she has savings/capital of more than £16,000 then she's excluded from claiming. As a single person under 25 then she'll be entitled to £265.31/month. She will not be entitled to claim for any help with the rent when living at home with you.

It's a digital benefit so can be claimed online. Once you claim you will have access to a journal and everything is done through that. Please see link above. Once she submits a claim her first payment will be 1 month and 6 days later. If she's unable to manage her own claim because of her mental health then you can be her appointee. I'd advise you to start a claim for her, as if you were her. Once the claim is submitted you should put a message onto her journal and tell them you would like to become her appointee and they will sort that process off for you. You will then be responsible for managing her claim, such as filling out forms, reporting changes etc etc. Her UC will also include class 3 NI credits.

When you claim the UC please make sure you report her health condition. You must continue to send fit notes without any gaps until a decision is made on her work capability assessment. This advice assumes she's no longer a full time student.

Although she's living at home with you, she will still need her owm money and i do understand that you give it to her but as an adult it would be nice for her to have some extra money to do what she wants with. (and i don't mean that in a nasty way)

If you need further advice about any of the benefits above please do ask and i'm sure someone will advise you further.

TJH_Fields69

Many thanks @poppy123456. At the moment we're holding out for her to go back to college, but I don't think that's likely at the moment so this info is priceless, thank you.

poppy123456

You're welcome. To be clear a claim for PIP can be made regardless of whether she's a student or not. You don't need a fit note for PIP either. It's a lot of information to take in but this link is well worth reading before you start a PIP claim. (it's long) https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

TJH_Fields69

Hello, an untimely update, sorry for the delay, I have been disengaged in more ways than one lately. So my daughter's official diagnosis is BPD. That in itself raises so many questions. In my mind, I can't believe that she has developed BPD from a "normal" view of the world and her upbringing, hence I am 90% convinced that this just isn't it. There is such a crossover between high-masking autism and BPD, for example. Meanwhile she continues to be disengaged, we can't even get her to come to take the photos to get her passport renewed so that she has some official photo ID.

I'm sorry to say, but most of the psychiatrists she has seen don't really seem like they treat their job as a vocation, and I think in 9 months she has seen at least 3 "permanent" people who seem to keep disappearing. The best appointment she has had so far, has been with a locum. She had been weaned off fluoxetine and onto mirtazapine, and the locum told her NOT to stop the fluoxetine but keep a steady low dose going. The locum also strongly suspects autism but I don't know if that will lead anywhere. If the official word is that BPD has developed without any other conditions, then what does that say about me and my wife? That's just a selfish view, but also I am soul searching and wondering what WE may have done wrong.

My own mood has had a strange change lately. The human brain is a powerful device, and mine can mask a lot of stresses and strains and compartmentalise quite well. However at the moment, I can't really think straight when I think about my and my family's personal life, I guess because the next steps aren't clear and I don't really see that any progression will be made.

Stellar

The BPD label is often weaponised by clinicians to try to get out to helping people that require more long term support. This is very common in NHS mental health services - which are unfit for purpose - and why many survivors call for the BPD label to be abolished. You and your wife have done nothing wrong. It's not you, it's them.

You need to fight hard to get your daughter's dx properly reviewed (and removed if it is not applicable, which given what you've said it very likely isn't). The BPD label is heavily stigmatised and this stigma will affect your daughters access to other forms of healthcare negatively. There is even a term for it - iatrogenic harm.

Outside of the BPD label, these services do not understand the needs of autistic people more generally. This may also be a reason why your daughter is not engaging to begin with. She may sense it, but not able to articulate it, hence even things like getting a passport photo is difficult. She may also be using weed to cope with the stressors of what is a very stressful world. this is common for neurodivergent people.

speaking of the weed - how is she getting hold of it? She - and potentially yourself and the other parent - risks a criminal record if the police find our because UK laws haven't caught up to reality yet.

TJH_Fields69

Thank you for the response! She passed the iscan assessment, and my mother (a special ed. expert in her time) thinks it should be able to "catch" even high-masking autistic traits, so I don't know where we are with that or what can be done. We think she was getting money from her boyfriend for the weed, now we're not so sure, but her use has tailed off quite a bit. We made a decision about a year ago to stop her pocket money. We're now at the stage where we have given her £20 here and there and ended up in A&E for our troubles after she has taken one thing or another, so we've explained that we will buy take-away, pay for taxis etc. but she's not getting cash from us. She's got an appointment with an OT today, let's see how that goes, and she's going through the process of applying for UC. She wants paid work, but we've suggested that with 1 GCSE she is better off starting to volunteer in a charity shop and see what happens. She'll have some money coming from my parents, but luckily her ownership of the account they opened for her can be delayed until she is 21 so that's another 2 and a bit years away.

TJH_Fields69

Update on this. My daughter's alcohol and weed use has spiralled lately, she thinks her fluoxetine isn't working. Anyway we managed to get her into the Priory for 28 days courtesy of my employer's health insurance, where they are changing her meds to Lamotrigine and giving her lots of therapy classes to attend. I hope she can also have continued contact as an outpatient, but I think physically being there and being in an institution is really helping her. Whether this changes anything is TBD, she's been there 10 days so far. AXA don't cover neurodiversity, at least my policy doesn't, so we're also going to find a provider to asses for ASD and AD(H)D.