Some advice about my daughter's treatment?

[SilverDragonfly1]

(My 'daughter' is not a blood relative but my son's best friend who we have known since 2010. She comes from a very abusive family, has lived with us on and off and calls me Mum. Just for background!)

My question is, after 5 months of care, should she have a CPN or other person managing her case and should there be a care plan? Lots more background below, sorry.

She is currently having various therapies at a dedicated mental health centre after a breakdown and multiple suicide attempts in September. The initial care really was excellent, with the crisis team visiting her daily and several psychiatric assessments arranged very promptly.

However, things are now getting very 'bitty'. She has one long term therapy going on- art therapy, which is a small group thing once a week with regular one-to-ones. She's also done a series of courses ranging from baking to CBT type things and has never had fewer than two days a week of this type of help, which again is amazing.

However, there is a core issue which is still not being addressed at all, her extreme fear of going out anywhere by herself. Initially this was dealt with by the centre funding cabs for her to get there and back, but now she is no longer considered an urgent case this has stopped. That means she either gets a lift from a friend in her group, or myself or her boyfriend's mum accompanying her (neither of us drive so it's two buses each way).

She has explained to her art therapist that if she can't get someone to go with her, she will have to stop coming and they have basically said 'okay then.' I don't know if they think she's bluffing but she really isn't. Therapy is beginning to get a lot harder anyway as they have started going deeper into the bad experiences of her past and this issue could really end up with her dropping it, which would be a huge waste of the time and money the centre have already put in (not to mention the huge amount of emotional energy her adopted family have invested).

So, we need to meet with them and try to sort this out (she can't sort it out alone, she finds it impossible to challenge authority). What I really want to do is have a proper meeting where things get put down on paper, but (finally coming to my question now, which I will put up top too as I didn't mean to write an essay) there doesn't seem to be a person who is specifically responsible for her case, no CPN or whatever and no care plan. Should there be? What are the policies for this type of thing? It would make things so much easier if there was one person to sort things out with! Currently I have spoken with her art therapist (who was only able to give me 5 minutes although she had been asked in advance to see me that day) and someone who was running one of the courses which has now ended in any case, nothing on paper either time and although I don't want to be pushy I truly don't think they understand the seriousness of this problem (especially as she always just nods mutely if they suggest anything she doesn't actually feel able to do!!! Then rings me up afterwards getting upset ARGH).

Sorry again, apparently I needed a vent.

[woodrunner]

Can you go into one of her CBT sessions and ask the therapist to focus, with some urgency, on her agoraphobia and anxiety surrounding travel alone? CBT could be the best way to deal with this, so if the therapy is in place already, that could be the best way forward.
You sound so lovely by the way. She's lucky to have found you.

[SilverDragonfly1]

Aw, thanks! She is the lovely one, more than worth taking care of.

I was wondering about writing a letter so there would be some kind of record of the problems, perhaps she and I doing it together since she is legally an adult so has to be seen to be taking some responsibility for her care in their eyes. Not a complaint, just asking for clarification of their process and if there is one main person who has her in their case load and explaining the problem she is having.

It is a bit hard to explain how she is around anyone who could remotely be perceived as an authority figure... she just withdraws and nods agreement to everything. It's the way she's learned to get through life in a volatile family and I worry that it is very easy for an over-worked and cash strapped service to just take her first answer as that is what's easier for them, rather than having to take the time to always probe deeper and double or triple check that she is really okay with what's been said and that she actually understands it.

[SilverDragonfly1]

Looking back, I probably should have added that she is 21, so really any time they spend listening to me is a courtesy rather than an obligation. I am named with them as her carer and next of kin though.

[SilverStars]

People who have a Cpn often do not have access to the care your daughter has, they just have a Cpn as it were. You may find that she has a named worker. Ad the treatment she is getting will be her care plan. Cpn's work with a CMHT and it sounds like your dd may be under a different team and has therapists rather than a nurse.

Has your daughter had a CAF would be my question. If not it may help her. You can look up what a CAF is but basically it is a meeting of everyone involved in her care including her and family ( could you ask to go?). Information is shared and documented. So things like travel could be considered. For funding for travel she should get a free bus pass due to her mental health issues. If she needs a taxi or an escort more long term funding may need to be secured not through the NHS but via a PIP ( new name for DLA, a benefit to cover personal costs for independence). She would get the money and up to her to pay for taxi's. other source of funding usually comes for adult social care so again you can request an assessment for more support from her.

[SilverStars]

And everything will be on paper. Her risk assessments. Her treatment. Her diagnosis. It is just you do not have access to it.

[redwineattheweekend]

She's unlikely to get a cpn in the current climate, but she should have some sort of care plan from the team.

I'd agree with pp about her getting some CBT help with her agoraphobia. As this is specific and goal oriented she should be able to ask them for this. I'd also suggest she look at some voluntary agencies for some specialist young person counselling.Sadly not always available on NHS, but sounds like given family history she could benefit from this.

Good luck with it, you sound lovely

[SilverDragonfly1]

Thanks to both of you!

I wouldn't expect to see her personal records at all, just feel it would be easier to have something for her to keep that states any agreements made re travel and maybe how they expect her to progress, so that she feels more confident and clear. I will look up the CAF thing tomorrow morning- as you can tell, I'm pretty clueless and certainly don't want to be demanding things they can't offer.

She did have a care plan with the home care team (used to be called crisis team) but she hasn't seen anything since then.

I feel a bit clearer about the way forward now :)

[SilverStars]

If she had a Cpn the care plan is usually about three bullet points and links to medication. I doubt it would mention how she gets to her therapy. That is where a CAF comes in. If she needs a support worker paid to escort her you as a carer can request that and say her family cannot continue taking her etc.

[SilverDragonfly1]

I have looked up the CAF information, but it all seems to be centred around children. Is there a similar thing for adults (she is 21, mentioned above but forgot to put it in my first post!)?

I'm going to start looking into PIP too, really grateful for your input!

[IloveJudgeJudy]

Sorry for the hijack, OP, but this thread has really struck a chord with me. DD has just been released from an adolescent unit and we have received the report from the care team. It says that her mood was mostly euthymic (which I googled and found means "normal"), but I explained to them that she is very compliant - just like your DD. They haven't seen through that at all and have sent her home even though she's planning various ways of killing herself.

She hasn't been offered much in the way of after care, either, I don't think. They also, like with your DD, involve her in the decisions when really, even though she's 17, she's not really capable of making some decisions as she's so compliant.

Sorry for the offload!

[SilverStars]

Hi yes CAF definitely for adults. In my work role I sometimes go to them. It is basically a joint meeting between all care givers and professionals involved to meet. There are agreed outcomes, sharing of relevant information etc. with children it is often risk assessment etc but for adults it is how best to help when more than one person involved.

[SilverDragonfly1]

Silverstars, that's excellent information, thank you! I will broach the idea as soon as I've talked it through with DD.

Ilovejudgejudy, jump in and offlaod as much as you like. I'm glad you understand where I'm coming from regarding the compliant thing. I think it's necessary to keep chasing up aftercare, although it is hard to do that without feeling like a pushy or over-involved parent! Maybe we can swap tips :)

[SilverDragonfly1]

Oh, silverstars, have also looked up the PIP system and looks like she would have more than enough points for enhanced living. I'm not sure if she'd qualify for mobility at all as that seems quite rigid (either you can't go out at all for psychological reasons OR you have to have help but for physical reasons, so not sure if 'have to have help for psychological reasons' counts) but that would be more than enough to cover cabs anyway. I get the feeling it will be a long wait for a decision, but time is something we do have.

[SilverStars]

I would definitely start a PIP claim as that may solve the finance of private transport for you!! And ask for copies of all medical letters sent by consultants, therapists etc to your gp as evidence for a PIP claim. And of discharge from hospital etc.

[SilverDragonfly1]

Great. You have made me feel so much better this weekend!

[vrtra]

she would absolutely qualify for standard mobility if she needs someone with her outdoors - good luck

[SilverDragonfly1]

You lot are stars :) She is going to come round this week as you need to make the initial application by phone apparently and there is no way she can do that on her own.

[SilverStars]

Brilliant!!

[SilverDragonfly1]

Finally got the form through today- and a letter saying it can take up to 6 months for the claim to go through. I had anticipated 6-8 weeks, as I knew there was a backlog... how naive can I be? Still going to go through with it, but it's not a solution at the moment.

However, she has asked if she can do some voluntary work at the city farm where I work, so that is progress! I will be able to take her up there and stay for her first few sessions until she feels comfortable- have explained this to the ladies she'd be working with already.

[SilverStars]

Hi but the payments will be backdated if successful.

Voluntary work sounds helpful

[SilverDragonfly1]

Oh, I know it will be backdated, but hundreds of pounds in 6 months time isn't as much help as far less in the next few weeks. That's not a dig at you, you've been great!

Got to apply for ESA too now as her SSP has run out. I'm not sure how that works- she couldn't apply before because she needs a form from her work which she couldn't have until SSP ran out, so I'm hoping they don't need months on end to process it- it seems that she will get a rate equivalent to jsa while they are considering it?

Hopefully voluntary work will help her get used to meeting new people and so on again, especially as everyone is very nice and non-threatening :)

[SilverStars]

Hopefully the ESA will be quicker turn around.