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

[NameChangeyMcNameChangeyface]

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.
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?

Why oh why are you letting your mentally unwell daughter live on her own 2 hours drive away? She has given you her version of events. That will be a very one sided version. You cannot be angry at a service that is totally underfunded. Bring her home, access support services, criticising them won't help.

I'd recommend seeking advocacy regarding her treatment and diagnosis from mind or a local organisation.

Contact the CQC who are the health care regulator to share your experience.

The local Clinical commissioning group (ccg) are in charge of commissioning services. They will have commissioned this service so should know whe6they are jot meeting patients needs.

In addition to Pals health watch are an organisation who may be interested to know this. They are kind of like a patient consumer body. (probs rubbish discription sorry) but some do advocacy stuff and help people navigate health care.

Your dd is lucky to have such a caring family who have the resources to go and get her. You're right it could have been very different.

Her mentally unwell daughter is at university. That is a perfectly reasonable thing for her to be doing. My mentally ill daughter is also a two hours drive away, at university. She's doing brilliantly, because the services that support her actually work. This has been the result of her sharp-elbowed mummy (me) criticising them loudly.

Mentally ill people don't have to abandon a normal life if the services that are there to support us actually do their damn jobs.

Sorry been mulling over your daughters experience. Complaining to PALs about a particular service or lack of service means obviously contacting a particular Trust who provide the service. You might have more of an impact if you consider contacting the commissioning team about the broader issue. Each CCG should have a mental health lead. They might just pass on the ‘complaint’ but will have to have read it. They are responsible for making sure the area has what it needs. Sorry if you know all this but sometimes complaints fall down because technically the team have done what they are supposed to - what’s in the contract the commissioners. The commissioners need to understand the gaps. Really hope all is well. You are all in my thoughts and prayers.

I’m only alive today because a woman on the crisis line saved my life.

It was a Sunday, I was at my absolute worst and had totally committed to what I was about to do. I walked to the train station and on the way I called the crisis team in one last-ditch attempt to be sure I’d tried to get as much help as possible. Basically proving to myself that I was a hopeless cause, etc.

The phone call didn’t go well, it didn’t reassure me nor change my mind. I hung up and stood next to the train tracks.

Almost as if in a movie, when I saw a train coming down and went to jump on the tracks... at the same time I heard sirens screeching into the station car park. I was dragged off the tracks with barely any moments to spare by a police man who kept me with him in the back of a van until an ambulance arrived who then took me to the hospital and I was committed and restrained for my own safety.

The woman in the crisis team (even though looking back I was incredibly rude and dismissive of her) had contacted (coz she had my name etc) my hospital next of kin to find my last known location, and it being a very small down deducted there was only a few places I would go to end my life (train station/docks/etc). She immediately sent emergency services in fact I recall them saying she contacted them whilst I was still on the phone to her.

There was nothing that would’ve stopped me that day. If she hadn’t have done that I would absolutely be dead.

I say all this because I feel that is the urgency your daughters crisis team are lacking, and that terrifies me because they really are risking lives.

Ah yes.
The so called crisis team.

You were very lucky MrsHoodwink.

Hi OP.

There has been some fantastic advice here - I would definitely suggest taking some of the suggestions above. However, something to consider and talk through with your husband and daughter (and any other children you may have), is registering for Power of Attorney. In my experience working in healthcare, it can be very difficult for family to advocate or intervene for someone else without it - particularly if that person is deemed to have capacity to make their own decisions. PoA would help with this. I'd suggest discussing it with her as a way of supporting her and taking some of the burden off her (it's not unusual for people to be resistant, understandably) - and look at both types. You'd need the financial powers should you have to talk to her bank, landlord, uni etc, should she become an inpatient and be unable to contact them herself. The downsides are that it does need her permission, there are legal restrictions to ensure this, and the amount of time it can take to become active.

Well it's worth ringing to be signposted maybe however in my (extensive) experience (and I recognise that this may be different in different places) pals won't get involved in mental health unless there's a physical problem as well.

The crisis team are really bad. I've found them less than useless with their 'well what do you want us to do about it?' when I'm sitting with an aspirin overdose who refusing medical treatment. She has a diagnosis of EUPD which was BPD. The label sucks. Now she has the PTSD label she's recieving intensive treatment and may be out of hospital in a few years.

The cynical part of me how the crisis team saved a life above says one look at the phone would have shown a call to the crisis team just before jumping on the lines.... That would have looked bad. I'm very glad that you were saved mrshookwink

You have to be loud, shouty and persistent as an advocate OP and learn how to navigate the system. Good luck.

If she is detained under the MHA, her father will be Nearest Relative, so they don't need a POA. The rest of the time, they just need her permission to talk to other services, banks etc, and there are standard forms she can fill in to cover that. Asking a 20 year old to sign a POA is too intrusive. I wouldn't have done it, and I wouldn't ask my kids to do it.

Mrshoodwink, I'm glad they recognised the urgency, and saved you! The crisis team I deal with are part of my care/crisis plan, so they know what they are supposed to be doing with me. Therefore, they are very good. However, a few years ago, during one of my 'discharged to GP services' periods, I rang them, and the guy I spoke to started telling me how stressed he was, because they were understaffed! Very helpful.

If this is in the South West then yes, I've terrible experiences of the mental health services in that city too. The crisis teams, the A&E when feeling suicidal, GPS, the lot were all completely useless and basically had a " get on with it " attitude. As pressure to succeed rises, the rates of student suicides are in the city too. But I'm sure that can be said for any city!

I'm sorry your DD and your family are having such a hard time, I hope she overcomes this and gets the help she needs

Thank you for your kind words part of me always thinks, would it have been the “headline” needed to give them a shake? that they couldn’t avert the crisis? I always break my heart thinking that there must be people they miss

I feel blessed to have had that one particular woman, I don’t even know her I wish I could thank her one day

I really hope this posted contacts whoever necessary and wish the best for your daughter For information purposes it is BPD that I suffer with

Poster*

Complain to PALS, but don't expect much. They only speak to the managers and ask them to call to apologise to the patient and then they give you the BS that it will never happen again.

As a long time sufferer of mental health and I too have worked in the NHS, it seems that nobody is taken seriously because everyone deems themselves as urgent. Unfortunately then those who are actually urgent get lost behind people who just want to queue jump. So many people can even self refer to mental health services these days so any tom, dick or Harry having a bad day can ring up and demand to access help even if the following day they feel fine. There is a HUGE strain on the NHS espeically mental health services, not that that's any consolation to you or your DD.

In all honestly I've been in and out of hospital and been under a mental health team for nearly 18 years, and the only reason I don't struggle anymore is because I came to realise that there is noone to get me out of this black hole. I have to do it for me, I can only rely on myself and listen to myself. I had and still do have a very supportive family and now husband. It seems like your DD does too which is an amazing thing to have.

I did to attend university 3 times and leave 3 times.. University isn't the place for someone feeling as low as you're daughter. Has she thought about deferring or maybe taken a break from it all. Her mental health is a lot more important and universities will only take on so much responsibility before asking the same.

I hope she does come through this, I do think people can get better. Again it took a long old 18 years to get to where I am, have a lovely personality disorder diagnosis under my belt but I cope with needing anyone. I do slip, and have really shit times but like I said before it's no thanks to any mental health team. Your DD needs to be around people, supportive but stern people that can guide her out of these dark times.

Good luck!

@gamerchick I would really like to know how the person you mention got the new diagnosis as my adoptive daughter is in exactly the same situation. May I PM you?

Crisis team worker here waves

Contact PALS. Only then will you find out what words were actually said in place of 'tough luck, wait for your appointment'

The least she should have got was a call back if she had stated intent to end her life so yes she didn't get an adequate service.

Unfortunately though crisis teams are not set up or funded as emergency services. I work in the crisis team of a major UK city and we often will have 4 practitioners total to cover a night shift for example. We have calls from police, ambulance, carers, patients themselves, care homes, etc etc etc. We can't drop everything in the office to go out to someone unfortunately so we do often have to call the police/ambulance service or advise people to go to A&E if they are at immediate risk of harm. That's not to say your daughter's experience wasn't inadequate. Just a bit of context.

Yes I would complain. I'm a firm believer that when it comes to the big things not being adequate you should complain, in the hope that things may eventually change.

My MIL had MH problems most of her life. I remember one night years ago when she was in such a bad way we had to call an ambulance (we were young and didn't really know how to deal with it). They rushed her to the MH hospital where she was a sort of outpatient but had been an inpatient many times over the years. They fobbed her off and I remember taking them to the side and saying to them in my firmest but politest of voices "if you don't take her tonight she will die". She was eventually admitted about a week later but by that time it was too late for her and she died within a week of being there. They failed her on so many accounts. If it had been down to me and DH we would have complained but her elderly parents were very against it and we didn't want to upset them.

So yes you should complain. MH services are professed to be a big focus at the moment. I disagree, I think there's a lot of lip service and I think that people need to act to make changes.

Sorry to hear your DD isn't doing well at the moment. It must be heartbreaking for you. You sound like a great mum and advocating for her will help.

If it's the city I think it is, they are (like everywhere) chronically underfunded and understaffed. They have 600 calls a week to the crisis team (a lot of which aren't actually crisis calls but still use staff time and resources).

There's a misconception that 'phoning them means someone will come out to you that day and that is rarely the case, especially at night when they will have a tiny amount of staff on and will likely have to go out for an emergency MHA assessment.

If you have an appointment booked within a few days, you'll usually be expected to wait for that unfortunately.

Speak to PALS however.

@arum that is so interesting about borderline personality disorder. My friend was diagnosed with this years ago,and eventually managed to lose her life to suicide after many attempts. Shortly before she died the emergency team basically told her there was nothing they could do and her CBT was withdrawn. I always felt she had been badly let down and yourpost confirms it to me. OP I hope things improve for your DD and she does not get let down so badly again by the people supposed to help her.

Very interesting advice from Arum.
The crisis teams are almost useless and the MH underfunding generally by the Tories means this type of nonsense will unfortunately become more common.

Mentally ill people don't have to abandon a normal life if the services that are there to support us actually do their damn jobs.

Damn right.

Good morning everyone. Thank you all so much for all your support and advice and for sharing your own experiences. I can't tell you how much I appreciate it.

DH brought DD home with some valium and some nice food. Her little sisters (and the dog) were all over her and she was quite content by the time she got to bed. She's had a lie in and is now in a Lush bath.

I'm less angry today; I realise the huge demands and underfunding which hamper the crisis team, but I still believe they should have done something.
I also think it should be DD herself who contacts PALS rather than me... if, indeed, she wants to.

I don't think that underfunding means we don't complain, or at least voice some concerns about treatment; underfunding affects the whole NHS and doesn't make them immune from criticism. I wouldn't, for example complain about long waiting times, hospital food etc., but individual workers or departments giving poor service or making detrimental decisions should be called out on it. Not necessarily so anyone can be 'told off', but perhaps to highlight deficiencies or poor practice and effect change, further training, whatever... small hope, I know.

I'll be reading more fully your responses and advice later today as I'm going to be busy now, but a quick read shows there's some great stuff there. I will likely post again too in response.
Again, thank you all so much.

Really glad to hear your daughter is home safe, hope she starts to feel better with some tlc xx

is she at the university of Bristol by any chance? Please make the complaint to them directly if you get a minute, the mental health support here is dire and we desperately need to improve things

Please give your feedback, but unless the funding of MH services changes then crisis teams will continue to only help people with the most serious risk histories (e.g. histories of the multiple serious suicide attempts and no protective factors like caring families).

I know in my area crisis teams are asked to provide care only to those with a serious and immediate risk, which just expressing suicidal thoughts would not constitute. It is a disgrace, but not necessarily the fault of the team, maybe th3 fault of the commissioning of the service.

gamerchick I would really like to know how the person you mention got the new diagnosis as my adoptive daughter is in exactly the same situation. May I PM you?

Of course.