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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

... To complain to PALS on DDs behalf? WWYD

52 replies

NameChangeyMcNameChangeyface · 14/07/2018 20:19

Long term poster, NC as poss identifying.

I'm so angry this evening. My DD (20) is staying in her uni city over summer. She has mental health issues and has done since she was about 12, becoming increasingly serious as the years have passed. Her acute periods have been horrific.
Anyway, she had an emergency today. She couldn't do anything, couldn't think, couldn't cope, just stuck in a pit of misery and depression. This also happened a few weeks ago and she was given emergency valium and came home (to us).
Anyway today we bought her coach ticket but she couldn't bring herself to move. I told her to phone her crisis number. In the meantime DH set off to get her (she is currently living alone which is a very bad idea). She is two hours away.

So she phoned me back later and told me she'd phoned the crisis team and told them she couldn't cope and didn't want to be alive. They basically told her tough luck and to wait for the appointment she had with them, next Wednesday. This is the supposed crisis number. She begged for some help but they said they wouldn't do anything. DD was frustrated and slammed the phone down. She regretted this, but thought they'd phone her back because she'd expressed suicidal thoughts and intentions and they'd be worried. They weren't and they didn't. Sad
This is a city with horrific student suicides rates, with three very recently, last one in May. Yet they brush off a potentially suicidal student who seeks help.
I told her to phone out of hours GP, who told her to go to local A and E. DH arrived in time to go with her and they're there now.

The crisis team are under the auspices of the NHS. Should I contact PALS about this... (with DDs knowledge and approval, of course)? I'm so angry about this: a young person who was not so close to their family could have had a very unhappy outcome after phoning this number. WWYD?

OP posts:
NotAsGreenAsCabbageLooking · 14/07/2018 20:22

It’s a serious let down, I thought they were meant to be cracking down on MH? ☹️

I’d want this addressed if I were you.

Oldaintallthat · 14/07/2018 20:22

Contact them.

Bambamber · 14/07/2018 20:24

Do it. My sister is currently in a critical condition in a mental health hospital after being repeatedly failed by everyone. We are lucky she is still alive. No one listened and everyday I live in fear I'll get a phone call to say she's successfully killed herself. It should never have got to this point. Mental health services have to be improved, people shouldn't have to reach the point my sister did before getting help.

NameChangeyMcNameChangeyface · 14/07/2018 20:24

Thank you. I'm not much of a moaner and wondered if I expected too much from a Saturday evening service.

OP posts:
NameChangeyMcNameChangeyface · 14/07/2018 20:25

Banner I'm so sorry to hear about your sister.

OP posts:
NameChangeyMcNameChangeyface · 14/07/2018 20:27

Bambamber

OP posts:
BeefyCakes · 14/07/2018 20:31

I've got mental health problems, and a couple of weeks ago I was suicidal, I couldn't get through to anyone. My mum saved me, I'm 33 and was whaling to my mum.

My next appointment? 30th July Sad

NWQM · 14/07/2018 20:31

Please do give feedback. Your daughter’s needs were not met well. As you’ve said if you want to make a complaint she will need to do it as an adult unless you sort help for her and therefore had an ‘experience’ yourself. Hoping she finds the help and strength she needs. You sound like a fantastic family.

NameChangeyMcNameChangeyface · 14/07/2018 20:32

Beefy I'm so sorry. I can't believe how poor mental health services are Flowers

OP posts:
NameChangeyMcNameChangeyface · 14/07/2018 20:36

Thank you NWQM

OP posts:
aproblemsharedandallthat · 14/07/2018 20:36

I totally agree with contacting them on your daughters behalf. Do not contact the crisis team, they will just be rude and unhelpful to you too. My BIL has been in a coma for 4 weeks after jumping in front of a lorry. If, and it is a big if, he pulls through, he will be severely brain damaged. He begged the crisis team to help him, told them that he was hearing things, self harmed once and took an overdose prior to this and they did nothing. My sister contacted them to tell them that he was still having issues and that she couldn't believe that they wouldn't help him. They did nothing. The day after, when he knew that he couldn't get help for all the traumas he had endured over the past few years which had given him PTSD even though he had literally begged them to admit him in to their care, he did what he did out of desperation and because he felt he was a burden. Do anything you can to help, we did all we could but it was too late for us to do anything more because the day after my sister spoke to the crisis team, she spent time looking for him and when she found him, she witnessed what he did and our world came tumbling down. Good luck Thanks

MadMags · 14/07/2018 20:45

That's awful, OP.

Should she really be living alone and away from you though, if her MH is that bad? That can't be good for any of you!

NameChangeyMcNameChangeyface · 14/07/2018 20:47

Yet another heartbreaking situation aproblemsharedandallthat Flowers

I realise it's not "my" experience, so may not be my place to complain, but reading these posts makes me want to even more. With DDs knowledge and approval, of course.

OP posts:
MadMags · 14/07/2018 20:47

And I'm no stranger to useless crisis teams. They sent my suicidal uncle home from hospital after an attempt because basically they reckoned he was too old to give intensive help to.

He succeeded later that night. Bastards.

NameChangeyMcNameChangeyface · 14/07/2018 20:50

She decided she liked city life, Madmags we're very rural. I think she regrets it now. Her housemates won't be joining her until the end of September. I think we'll be persuading her to stay when she arrives home tonight.
But yes it's a constant worry.

OP posts:
mumsastudent · 14/07/2018 20:51

request her full medical records you will have to pay and it will take time. Lookup hospital concerned complaint procedure. when you have full facts write letter of complaint keep copy send it by recorded mail so someone has to sign even if its their mail room. Bullet point complaints = be cold logical and concise. make dates of dates times & who exactly your daughter spoke to.

NameChangeyMcNameChangeyface · 14/07/2018 20:51

Madmags Flowers

So many Sad

OP posts:
MadMags · 14/07/2018 20:53

Ah, I see. That's understandable. She's only young. I really hope you can convince her to stay with you until her housemates return.

I know how exhausting the worry is when you're away from them. I hope she gets the help she needs. Flowers

NameChangeyMcNameChangeyface · 14/07/2018 20:54

Thanks Mums good advice.

I have to go and put DC to bed and see to other things now. Thanks for all your experiences and advice, everyone, very helpful.

I'll reply to any more tomorrow. Smile

OP posts:
LadyFidgetAndHerHandbag · 14/07/2018 21:05

Name change, I have a feeling I know where your daughter is as I live in a city that is having a huge student mental health crisis. Obviously I won't say which. I think you should definitely complain. It's truly awful that the 'crisis' team can get away with this behaviour and your daughter is not the only one they've let down. I would also get in touch with the university health services - there should be information on their website.
Unfortunately the fucking Tories are slowly dismantling the NHS and mental health services are chronically underfunded. Supposedly all their resources are focused on people with the greatest need but that doesn't seem to be true (and I say this as someone with chronic mental health problems). Best wishes to all of you Flowers

PurpleWithRed · 14/07/2018 21:18

Absolutely 100% complain to PALS and also contact your local Healthwatch and report what has happened to them too. They can help you and your daughter through the complaints process.

Theoscargoesto · 14/07/2018 21:26

If your daughter is where I think she is, there has recently been publicity about the father of a student there making the point that the uni has duties to students: I think he was aiming for (and got an agreement that there would be) more cooperation between the uni and students in times of crisis. That might be interesting fro you to look at.

As the mother of a student with MH issues, I really do empathise. And I think you and DH have done everything you can, it's not a matter, as someone upthread said, of whether she should be living away, I imagine you thought long and hard, and hoped hard too, about how that would work out.

As a volunteer for a well known children's charity, I can say that provision for mental health, or the lack thereof, is truly shocking in the UK right now. Yes complain to PALS, your DD deserved much better support. I wonder too about raising it with your MP just for awareness.

Best of luck to you and your family OP. I think you are wonderful.

Arum51 · 14/07/2018 21:40

Right. This will be half rant, half advice. Hope you get to pick out the 'advice' bits! I'm bipolar. I'm in my 50s and I've been ill my entire adult life, so I know the system well.

Crisis teams are shit, across the country. There are usually only 2 to 3 people on, even in big cities. It's Saturday night. They are gatekeeping, because they know that at some point tonight, they are going to have to go out, probably to detain someone. That takes hours, involves a lot of paperwork, and usually involves them being screamed at by the police. The crisis team simply do not have the resources to deal with a situation like your daughter's.

Does she have a diagnosis?

This is important. Diagnosis, particularly for the big nasties like bipolar and schizophrenia, are the Golden Ticket. It means they have to do something, it's the law.

Is she involved with services? Ie, does she have second tier support, do they know who she is? Her support worker should have spoken to them, and told them what's going on for her. The crisis team phone me at least once on both Saturday and Sunday, to check in and make sure there is no crisis brewing. This helps both sides - I know they are checking in, and they know the situation and i can talk to them if I need a plan in place for that night. They get a heads-up if I may be struggling. Is there anywhere your daughter can go when she feels unsafe? Lots of trusts have 'sanctuary' type places, where you can ring up, then go down there and spend some time with workers to calm down. There are also crisis houses, an alternative to hospital wards, where you can go and stay over to get some healthcare. Your daughter should be able to access all these things if she is accessing secondary services.

Your daughter should have a care/crisis/relapse prevention plan. This should be detailed, and as long as she's given permission, you should have a copy and know it off by heart. This details triggers, how to avoid them, steps that can be taken to try and alleviate them. It also details symptoms that a crisis is coming, and what everybody has to do in that situation. Who does what? Where can she go? What is she entitled to? The Plan is important for a lot of reasons. It gives her a sense of control. It is on her records/s, so if she rings in, the crisis team know exactly what they're dealing with. You know what is supposed to happen, so can advocate for her if it isn't. Get a plan.

If she doesn't have a diagnosis

Bloody get her one. As above, it gives her access to things she won't have without one. However, this comes with a caveat:

Do not, under any circumstances, allow them to diagnose her with 'Borderline Personality Disorder'

This is crucial. Leaving aside the bullshit notion that anyone can have a disordered 'personality' (what's an 'ordered' personality look like?) BPD is a cop-out diagnosis. Under mh law, personality disorders are considered 'untreatable', and mental health care can only be delivered to people with 'treatable' conditions. A diagnosis of BPD is a disaster. It means that she is not entitled to services. They will patch her up in a crisis, then chuck her back on the streets until the next one. Across the UK, there has been a massive rise in the number of BPD diagnoses, mainly in young women, in particular, young women with trauma histories and/or self harming behaviour. For many of these young women, they actually meet the diagnostic criteria for PTSD, but that's not the diagnosis they are getting. Resist any attempt to diagnose her with a personality disorder. She will be viewed as 'manipulative', 'attention seeking' and a 'revolving door patient'. I have heard far too many young women say they were told that "suicide is a choice you can make" when they call for help. BPD is a death sentence.

Go along with her to her appointment on Wednesday. Get your sharp elbows out. Do not allow this to continue. And if she hasn't signed the consent form saying the mh team can contact you and discuss her health with you, ask her to do it.

EssexMummy123456 · 14/07/2018 22:03

I don't think that crisis teams are shit at all, the OP has her interpretation of events it doesn't mean its accurate.

Gruffalina72 · 14/07/2018 22:14

Gosh, I'm really sorry. How frightening.

I hate to say it, but this is pretty standard for crisis teams. They won't come out to you out of hours (ie overnight and at weekends), they'll just tell you to go to A&E. And if you end a call they will not call back.

It's just a person at a desk answering the phone who may or may not be sympathetic if you have worries you want to offload. Their view (which I and pretty much every survivor I've ever spoken to finds appalling) is that if you're calling for help you won't do anything, and you need to take responsibility and take yourself to A&E if it's "really that bad". At most, in some areas, they will call the police on you. Getting your door kicked in and your house searched doesn't tend to have a positive impact on someone in crisis, though.

Even in hours I'm not sure you'd have much luck getting them to come out on the day you call if you don't already have an appointment. It all gets positioned from "you have to take responsibility for yourself" even though the actual problem is their lack of resources and training.

The point of me telling you this is that if you're aware of how they operate you can make informed decisions about what you do next and how to support her.

The complaints process is tough, and your daughter would need support to go through it. Lots of people find it pretty brutal and traumatic. It's possible though that it will result in a review of her care and support so that it better meets her needs. But it also might not change anything at all.

Mind have an info line. I've never used it, but I've heard some people who've found it helpful. It can't hurt to try it as a way of exploring what your options are in terms of care and support going forward. The number is on their website.

Mind also have an online community called Elefriends. Your daughter might find it a place to get support and solidarity from people who relate to what she's going through. It's sort of like Twitter in that it's a continuous feed you post a message on and then people can reply to you with support or advice or "thinking of you" etc type messages - only it's closed and actively moderated and behind screen names not real names, so it doesn't have the abuse and bile of Twitter or other social media and feels safer. Elefriends.org.uk

It might be something that would help her when she's feeling like that as it's instant support, although obviously not a substitute in a full blown crisis, and it does have firm rules so as not to distress or trigger other people. But in the lead up to one or on a bad day or a lonely day... Having a place to talk to other people who've been through it and get it can make a huge difference.

Does she have a care plan or is she under GP care? I'm leaning towards CPA if she's been "privileged" to be granted the crisis team number. (My sarcasm is aimed at them, not you or her). Is it a decent care plan that sets out the steps to follow in a crisis, and what to expect from agencies? Does it detail support for her on a day to day basis to keep her out of crisis? Is it actually helpful?

If not, then trying to get her on the care plan approach with a care coordinator to meet with her on a regular basis and provide practical support seems like a sensible avenue to pursue, although it might take some battling (resources). She would need to be under the care of her local Community Mental Health Team rather than her GP. If she's been ill since she was 12, I'm sort of inferring that she might have been under CAMHS and then graduated to CMHT, so maybe this is already in place? It's possible to be under CMHT but not under CPA with a care plan, so just checking.

If she has a care plan and it's rubbish I'd focus my attention on getting that addressed. If she's not under CMHT/CPA and doesn't have one, I'd be pushing to get that changed. GP managed care hardly seems appropriate.

If she has all of these things, perhaps you could draw up a family crisis plan / care plan? There are templates of the various things covered, but it might be an opportunity to set out the things that will help her cope and avoid a crisis while she's living away from home (finances, activity, leisure time, relationships, physical health, etc etc). Spending some time on building the support structures around her and recognising all the positive things you're already doing but maybe not noticing might help you all feel more in control. It can help to see things written down.

And then a separate crisis plan one for her early warning signs that things are getting worse and how she can respond to them with your involvement maybe? Eg if I wake up feeling like x, then doing y usually helps. / if I start feeling I can't move, then z has helped in the past.

If it could record all the things she has the power to do by herself that are known to help that's great. (Feels less hopeless and powerless when you realise you do all these things to take care of yourself and they do help). It could also set out the ways she can call on your support, and the triggers for you to want her to do that (in the sense of "we don't feel burdened if you contact us because you feel xyz".) and just set out the different options and strategies you can use - Skype, book a coach home for her, go and visit her, pick her up, come and stay at home for the weekend. Etc. So it's written down in an easy to read way and she can see her safety net, and you have the peace of mind that you have a plan.

Obviously only if she's on board and would find this helpful. Or support her to draw up her own more personal version. Even if she has an official care plan sometimes it can feel invasive to share with them all your coping strategies (eg if looking at cute kitten videos online is one of them). Or it might be nice to have a postcard sized version that's easy to take in when she can't focus.

You could set these out in tables (eg for crisis plan: warning signs, things that help, people to contact - in order of severity and escalation). I've also seen crisis plans that are set out with boxes numbered 1 to 10 to match the way you might be asked to grade hoe you're feeling. In each box it describes the warning signs, emotions, reactions, etc and the things that help them.

The advantage of this is that when things are getting bad she can just say "I'm a 5 today" and you know exactly what that means (assuming this is something she wants to do and is ok for you to have a copy) and you can also monitor if she's deteriorating if on Friday she's a 5 but she calls you the next morning saying she's hit 9.

I hope that makes some sense.

Does her uni area have a crisis house or crisis cafe? They can be few and far between but it's worth checking, as they can be a good alternative to A&E when things are getting bad.

My other thought whilst writing, is whether she has a crisis box. Different people use different names - comfort box, anxiety box, etc. Some people use an actual box, some people just have a list of things that serve the purpose and refer to the list to remind themselves what to use.

For instance, it could contain that postcard sized memory jogger of what to do in a crisis. It could have a snuggly blanket she can cuccoon herself in if she's anxious or feeling numb. A candle that smells nice. Photos of people she loves. Photos of favourite places. A note to herself reminding her she can get through this. Little gadgets to fiddle with. The cliched colouring book or art supplies. A little teddy to hug. Those glittery jar things that I have completely forgotten the name of but Johnny Benjamin had one when he did a speech at the RCN(?) conference (glitter jar?!). A favourite book or picture book. Poems. Music or a reminder that playlist abc is often helpful when she feels like this. A note of a particular coping mechanism that is helpful (like holding ice cubes if she feels numb or scrunching paper). If she has preferred strategies like a "body scan meditation" or the 54321 thing or something, she could include a simple instruction sheet to follow when she's struggling to remember it on her own but wants to try them?

Some people make a pretty box to keep all this in, some people have drawstring bags, some of us just have the list somewhere safe and the objects scattered around the house. If she struggles when out and about it can be helpful to have a miniature portable version - eg something comforting that fits in her pocket to hold for reassurance, or a soft scarf she can swaddle herself in and hold onto.

It really depends on what's difficult for her and how she finds it helpful to manage them. I've mainly focused in distress coping ideas here as that's what your posts have been about, but I realise on a day to day basis outside of crisis it might be different issues.

If she's somebody who finds the guided mindfulness "meditations" helpful then she could download a few onto her phone so she can listen to them with earphones anytime she wants, wherever she is. If it's not something she's tried before it can take a bit of getting used to and may not be for her at all (I hated it with a passion at first, found it useful for a while, don't currently use them), so they're not the kind of thing you take up for the first time in crisis, but can help in crisis or to avert crisis once you're used to them.

This website is American, so can be a bit jarring at first, but "soften, soothe, allow" can help when you're in a lot of emotional pain. self-compassion.org/guided-self-compassion-meditations-mp3-2/

Franticworld.com has a bunch of meditations under resources, including a 3 minute one. I've never really been a huge fan of the meditation concept, and like I said hated them at first, but I think when I went through the stage of using them it was because it was helpful to reel like I was being "talked through" how I felt by somebody who didn't require me to talk back and wouldn't be affected if I wasn't paying proper attention.

I'm mentioning these as a possibility for the "distress box" rather than in any expectation it's going to magically cure all her difficulties.

If she wants an understanding person at the end of the phone, samaritans might be a better bet. It's free now which helps, and they can sometimes arrange to call you back to check in with you at a set time the next day if you're really distressed (maybe don't rely on that, as I don't know what makes them decide to offer it, but for you as a parent it might be slightly reassuring to know). Obviously they can't do anything practical, but if the crisis team aren't either... Advantage of samaritans is that if she's not finding the first person she speaks to helpful she can end the call and try again for a different person. Can't do that with crisis team. Only one person on cover OOH usually, so if they're being a compassionless arsehole you're stuck.

I apologise if I'm telling you things you already know, but you sounded (understandably) at your wits end so it seemed better to splurge and let you pick out the things that could be helpful, if anything. I'm just trying to share things that might help manage this over the longer term given than crisis teams can be bloody useless. If it's no use, just scroll past and ignore me (genuinely).

I really hope things start to get better for your daughter. Flowers

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