Struggling waiting to get help

Former Member

Hello
Thank you for reading.

For the hope of getting replies I will try my hardest to keep this brief.


It started about November I first remember it, my sleeping got really bad-to that I was sleeping no more than 3 or 4 hours a night, if you can call that a night. From 3 or 4am to 7am. I always was up at 7am for uni. oh, yes I am an first year at uni.

I have tried lots of places, like uni nurse, a service called Talk mental health (not saying the place name), a service called pathfinders, I have ended up in A&E, I have been going to GP lots after that.


My mental health is a bit more complicated than just sleep problems (which did improve when I got sleep medicine in February, but now is going back bad again). I self harm, have done for 6 years, nothing new to me just as I am in a new place now and older they are dealing with it really different, I've got history too, I was in CAMHS for a while until I was 16 which is when it ends here, they diagnosed me with Autism though so I got services for that rather than adult mental health. That explained so much, but the mental health problems have never really gone away, and now I am at uni they've gotten bad.


The current issue is that since November I have not actually had any help. The uni have recently got a new mental health worker in, so I see them now but outside of uni still nothing. I am currently waiting for the letter the GP wrote 2 weeks ago to get to the Pathfinders service to make them help me. the GP realises I need help, the pathfinders didn't seem to but never actually sent any kind of summary or ending letter or anything, they just never did anything.

So, it's been since November I have been trying, since going to the GP they have suggested stuff like specialists and medication which is a big thing to me. But all the times since then I have not really had anything to help.

What I really just want is a decision-yes or no to specialist, yes or no to medication, yes or no to any of these other services. Just some kind of plan to happen. I am really struggling with all this unknown and waiting. I guess that's why I am writing this, because I can't cope any more. I went to the GP today and found their is no news about the pathfinders replying to his letter. I cut earlier because that is my only way to deal with this waiting and unknown. So please, if anyone knows any better ideas, or just has a similar story that I am not alone in waiting, that their is help somewhere when I get to it and it can get better that would be amazing.

Former Member

I'm sorry to hear you're struggling at the moment and it does definitely sound like you need a bit of extra support- have you been referred to the community mental health team? If you have, then you should have been also given a number for your local crisis team who are literally just a phone call away if you need someone to talk to, or if you need to be seen rapidly. Is the self harm something you want to stop? I know it may seem like a good way to deal with stress but sadly it becomes less and less effective, which means your risk for seriously harming yourself goes through the roof. It sounds as if you need to learn healthier coping strategies to deal with tough times- such as running a bubble bath, or doing something you really enjoy and please remember that you deserve to be good to yourself and to take breaks from uni work if you need it. I'm amazed they haven't actually given you any medication as your doctor can prescribe something for you until a psychiatrist assesses you.

I wish I could say that medication and therapy is going to solve everything but it does depend greatly on the work you put in yourself. Studies have indeed shown that people suffering from mental illness can get better with help and support, it is definitely worth waiting but remember to keep on their back otherwise you could end up slipping through the cracks (as I have done).

Finally, I know this may not help much but if you haven't tried any of the following to help with your sleeping then it may be worth a shot.
1) Avoid drinking caffeinated drinks at least an hour or so before bed, try drinking malted drinks like Horlicks or a hot chocolate instead.
2) Don't look at screens (such as your phone or laptop) while in bed as the light from the devices tends to trick your brain into staying awake
3) Try and engage in some exercise during the day- it could be as simple as you've just not expended enough energy. Try walking somewhere instead of getting the bus.
4) A few drops of lavender oil on your pillow can have quite a strong sedative effect. You can get lavender oil from health stores and chemists.

I hope you get the support you need soon, no one should have to sit for weeks on end without support, in the meantime please use here and other helplines if you're feeling low.

TheMix

Hey amy,

Really glad you have found this place and well done for reaching out here.

@Nietzcshe gives some really good advice, it sounds like you're keen to engage with support but you're struggling with getting things started and feeling alone in these decisions. Do you have any family or friends you feel able to confide in when things get tough?

I wanted to drop in a few links that might be useful to explore as well...

Youth access are worth looking at - there may be a local counselling service that you can self-refer to if the GP route seems to be taking a long time, you can look up local services here: http://www.youthaccess.org.uk/find-your-local-service/

Helplines can also be a great source of support as mentioned, whilst you're in this waiting period. Here are a few that you might find useful:

Mind infoline - can help with advice and support around navigating services: http://www.mind.org.uk/information-support/helplines/

Hopeline - if you're feeling in distress or would like support with your urges to self harm: https://www.papyrus-uk.org/help-advice/about-hopelineuk

TESS also offer support specifically for young women that self harm, they have a text and email service too: http://www.selfinjurysupport.org.uk/tess-text-and-email-support-service

Let us know how you're getting on *hug*

Jo

Former Member

Nietzsche wrote: »

I'm sorry to hear you're struggling at the moment and it does definitely sound like you need a bit of extra support- have you been referred to the community mental health team? If you have, then you should have been also given a number for your local crisis team who are literally just a phone call away if you need someone to talk to, or if you need to be seen rapidly. Is the self harm something you want to stop? I know it may seem like a good way to deal with stress but sadly it becomes less and less effective, which means your risk for seriously harming yourself goes through the roof. It sounds as if you need to learn healthier coping strategies to deal with tough times- such as running a bubble bath, or doing something you really enjoy and please remember that you deserve to be good to yourself and to take breaks from uni work if you need it. I'm amazed they haven't actually given you any medication as your doctor can prescribe something for you until a psychiatrist assesses you.

I wish I could say that medication and therapy is going to solve everything but it does depend greatly on the work you put in yourself. Studies have indeed shown that people suffering from mental illness can get better with help and support, it is definitely worth waiting but remember to keep on their back otherwise you could end up slipping through the cracks (as I have done).

Finally, I know this may not help much but if you haven't tried any of the following to help with your sleeping then it may be worth a shot.
1) Avoid drinking caffeinated drinks at least an hour or so before bed, try drinking malted drinks like Horlicks or a hot chocolate instead.
2) Don't look at screens (such as your phone or laptop) while in bed as the light from the devices tends to trick your brain into staying awake
3) Try and engage in some exercise during the day- it could be as simple as you've just not expended enough energy. Try walking somewhere instead of getting the bus.
4) A few drops of lavender oil on your pillow can have quite a strong sedative effect. You can get lavender oil from health stores and chemists.

I hope you get the support you need soon, no one should have to sit for weeks on end without support, in the meantime please use here and other helplines if you're feeling low.

Hi, thank you for reading and replying!!

The GP tried to explain this to me, Pathfinders is the Community Mental health team - for some reason they have 2 names for exactly the same thing. I got no idea why, I just used Pathfinders for it, partly because it's shorter, and partly because it just sounds more friendly and supportive somehow. If Community Mental Health Team is what it is called in the rest of the country then I guess I chose the one for me to use. So, whenever it says Pathfinders in my first message, it's the same thing, and I am not typing it again..

I've not got any phone number for a crisis team. But, even if I did it doesn't matter because I can't use phones. Because of autism-I have a massive fear of phones because they rely on my ability to talk, and I can't talk that well so whenever I have use phones it ends badly because the person don't understand me. I also get confused because I can't work out if I am supposed to answer or keep listening for them to say something else. A final problem is I struggle with listening, because my brain can't process information the same speed that people speak, so I get confused and never remember anything.

I don't want to be self harming for the rest of my life-so ultimately yes I do. It's just not that simple though.

I will admit I don't do much for myself. I do want to find more leisure stuff to do but keep failing to. Other than that I don't ever have time to do something I want to do, their is always emails, or I need to prepare for meetings, or get some work done, or well so many other things.
I have never worked out how taking a break will help-your just taking away time so then when you finish the break you have more to do with less time to do it in. It makes me more scared, anxious, stressed than I was before...

Why are you amazed I don't have medicine yet? What makes you think that I should have it?

I tried all that kind of stuff in November, or pretty much do it all anyway. I think the ultimate issue is that part of autism for me is that I can't feel things, (lots of things, hunger, thirst, pain, temperature, tired) and as I can't feel tired if things get difficult and I need to finish something I just stay awake and do, a few nights later I am suddenly still awake at 3am and won't sleep again properly for a month. It's a constant cycle.

Former Member

The Mix wrote: »

Hey amy,

Really glad you have found this place and well done for reaching out here.

@Nietzcshe gives some really good advice, it sounds like you're keen to engage with support but you're struggling with getting things started and feeling alone in these decisions. Do you have any family or friends you feel able to confide in when things get tough?

I wanted to drop in a few links that might be useful to explore as well...

Youth access are worth looking at - there may be a local counselling service that you can self-refer to if the GP route seems to be taking a long time, you can look up local services here: http://www.youthaccess.org.uk/find-your-local-service/

Helplines can also be a great source of support as mentioned, whilst you're in this waiting period. Here are a few that you might find useful:

Mind infoline - can help with advice and support around navigating services: http://www.mind.org.uk/information-support/helplines/

Hopeline - if you're feeling in distress or would like support with your urges to self harm: https://www.papyrus-uk.org/help-advice/about-hopelineuk

TESS also offer support specifically for young women that self harm, they have a text and email service too: http://www.selfinjurysupport.org.uk/tess-text-and-email-support-service

Let us know how you're getting on *hug*

Jo

Hi Jo, thank you for replying.

It's not that I'm struggling to start-just look at how many places I have been to and tried since November. It's more that I feel really let down and forgotten by the system (hmm, when has that ever happened before? well.. lots) which is a really hard feeling to deal with. It's like I am not good enough, or my problem aren't 'right' enough to fit into the system and get support. Because I went to this service, they refused to help and now the GP is having to 'fight' for me to get them to help... It's horrible to go through. It does often make me want to make my problems worse, I keep wanting to behave badly in uni to get attention like many autistic people can. But, I can't even do that so I just end up feeling not good enough again.

My mum's been coming to the GP with me, which is both good and bad. Good because she can listen then talk about it with me later. But bad because if their is problems with mum (and their is) i'm not going to say that when she is there. Not got any other family, and not got any friends.

I don't really want any other services actually. I feel really bad with all this already, I always end up cutting before or after an appointment, or sometimes both because of how worried I get about going. I worried about this site too so more I will just get the same problem. It's what I said in my first message, all the going in cirlces between services, waiting and not knowing stuff is really difficult and I can't understand how another service, another referral, wait, assessment, wait for a decision etc will do anything other than make it more complicated with another thing and then make me feel worse.

Former Member

Ah, sorry Amy I must have misread your first post- do you feel your receiving adequate support with your autism? There's is a high prevalence for dual diagnoses with autism (such as depression) and so my medication question was in regard to offering an anti depressant (unless you're on medication that'll interact with it, of course). I understand why waiting for appointments can be incredibly stressful but unfortunately, services are so stretched that there is usually a fair bit of waiting involved. I've found that a lot of counselling services outside of the NHS are much quicker and less stressful than waiting for your CMHT appointment- perhaps there's another support service in your area who could see you in the mean time to provide support? If you feel stressed about making the referrals yourself, you could perhaps ask another person to make the referrals for you. I suppose the only thing you can do is hold on, and focus on the thought that it'll be worth the wait in the end. Please feel free to use this space as a place to vent- even if we can't help we're here to listen.

Former Member

Nietzsche wrote: »

Ah, sorry Amy I must have misread your first post- do you feel your receiving adequate support with your autism? There's is a high prevalence for dual diagnoses with autism (such as depression) and so my medication question was in regard to offering an anti depressant (unless you're on medication that'll interact with it, of course). I understand why waiting for appointments can be incredibly stressful but unfortunately, services are so stretched that there is usually a fair bit of waiting involved. I've found that a lot of counselling services outside of the NHS are much quicker and less stressful than waiting for your CMHT appointment- perhaps there's another support service in your area who could see you in the mean time to provide support? If you feel stressed about making the referrals yourself, you could perhaps ask another person to make the referrals for you. I suppose the only thing you can do is hold on, and focus on the thought that it'll be worth the wait in the end. Please feel free to use this space as a place to vent- even if we can't help we're here to listen.

Half yes, but not completely. I'm at uni and so get DSA (disabled students allowances) it's to pay for all the extra stuff I need as a student, so many different type of support worker and equipment.
That's the good bit, everything else is no. Trying to get work experience or a job is impossible because careers won't help me, the SU won't let me join groups either.
Out of uni then no, I do not get enough social or leisure opportunities. I want to have things to do like when I don't have lectures, to go out to local groups, just something that's not uni and not me being in my room playing with lego. But, for various reasons it not possible.

I know their is, I've been 'suspected' (not sure that's the right word or not?) of having mental health problems for years, since starting secondary school 9 years ago (wow, feel old now) really, I was sent to various mental health groups and services through school but none really worked. Until 1 worked out I had autism, they then ignored the mental health part. Until I'm now at uni, and really struggling it's got worse so I am in the system again.
I do have other medication, I have no idea if any of it reacts with antidepressants but I can't imagine it would. Their is nothing else for my brain or that affects the brain.

I'm annoyed that at the wait because I already had to wait for the CMHT once. I have been assessed by them once too and they refused to help me. I think the first problem was I was scared on the day so struggled to speak but then I think they don't understand autism, and then they used autism to 'blame' for all my problems and so said I don't have anything they can help with. so, it's normal for people to sleep 3 hours a night? or to self harm? apparently yes. I also don't think the GP letter will change their mind, but will see. but I got no choice but wait, then end up back at the GP and see what he will do next.

As I said in reply to the mix person, I don't want any other services. read what I put on that reply.

Do you know what this CMHT do? no-ones explained it to me, they got no website or anything. You said other counselling services-so is CMHT counselling? I don't even know what I am waiting for.

Thanks' for listening. It is nice to have someone listening, and replying so I know your listening or reading, and are continuing to. Thank you.

Former Member

It sounds like some mental health professionals have just been lazy with providing the support that is necessary for you to manage- I'm so sorry that they've just brushed your mental health issues as "just autism" (it must feel really isolating not being listened to). The fact that the Student Union are preventing you joining groups is ridiculous- they're meant to allow equal opportunities to everyone so they can get into serious shit for this. Perhaps you could ask for an advocate to accompany you to either your university's career services and student union to speak on your behalf? If it seems you're not getting very far, threatened to contact the local paper about your experiences. You soon discover places suddenly become available when organisations are threatened with exposure.

Also, the CMHT covers the NHS side of mental health care- they provide various different therapies, support services and obviously consultants who deal with medication. They're also the people you speak to in times of Crisis who would then put you forward for inpatient care (hopefully you'll never need it). The unfortunate thing with the CMHT is that they're so badly underfunded that waiting lists can last longer than a year... Government cuts and the general stigma of mental illness as being somehow "less important" than physical illness is to blame for this imo.

Former Member

Nietzsche wrote: »

It sounds like some mental health professionals have just been lazy with providing the support that is necessary for you to manage- I'm so sorry that they've just brushed your mental health issues as "just autism" (it must feel really isolating not being listened to). The fact that the Student Union are preventing you joining groups is ridiculous- they're meant to allow equal opportunities to everyone so they can get into serious shit for this. Perhaps you could ask for an advocate to accompany you to either your university's career services and student union to speak on your behalf? If it seems you're not getting very far, threatened to contact the local paper about your experiences. You soon discover places suddenly become available when organisations are threatened with exposure.

Also, the CMHT covers the NHS side of mental health care- they provide various different therapies, support services and obviously consultants who deal with medication. They're also the people you speak to in times of Crisis who would then put you forward for inpatient care (hopefully you'll never need it). The unfortunate thing with the CMHT is that they're so badly underfunded that waiting lists can last longer than a year... Government cuts and the general stigma of mental illness as being somehow "less important" than physical illness is to blame for this imo.

That's why I am so angry about everything. I am looking forward to the bit when someone goes 'oh my, your self harming more now' and then fails to work out that I am doing it because of all the chaos, waiting, unknown, not being listened to, stuff not being explained to me.. endless list. That kind of thing always entertains me, which is lucky because the alternative would be a shutdown/meltdown which no-one knows how to deal with and would get me ignored again by mental health services which they already did once. (the downside is that if I end up laughing they then decide I'm happy and don't have any issues. I hate these because I can't control my emotions and their is so much I can do that stops me getting support, which I must of done the first time they assessed me.)

I know they are meant to. I know their are laws about places needing to provide reasonable adjustments for disabled people. I just have no idea what disabled people can do if this don't happen-so the law is completely no help. I got no clue how to contact a paper. It is a bit more complicated than I said before though. More accurate is that they say I need 1-2-1 support to go to groups, they then have no money, or have limited and not sustainable money. So they don't want me to start going regularly then run out of money and need to tell me I can't go anymore. She keeps admitting the SU have never had this happen before.
But then I got injured In November and can't do much in the groups anyway, so I suppose not being able to go would happen to any student that got injured If they disabled or not.

I already have a advocate. as it happens when I went to the CMHT to get assessed last time, they walked me to the office of this advocacy service (which is the same building my living support comes from so it got complicated) and I ended up with an advocate. No idea why they did that, because no-one explains stuff to me. The advocate is rubbish though. she is great at saying she will do stuff then taking 4 weeks, 6 weeks of me keeping asking why she not done it, before it gets done. so, more frustrating than helpful and it become another thing I need to organise, remember what to ask them etc.. which is not what I need.
I had to cancel an appointment with them because I was away because of illness (got a sickness thing, got dehydrated, end up in hospital, took a week to be able to eat again). At some point I will need to face to read the emails she sent and reply and arrange another appointment. But I still can't face that.
I did get her to write to these MH services to get them to explain what is happening-like why I not getting help. I got a letter back from them but she wrote to the wrong one, -the 1st one not CMHT who said they would not help me because they only do 6-8 weeks of therapy and they think I need more than that so they referred me to CMHT, so I need to contact them if I not getting any help. I still got no idea why CMHT wont help me and now the GP has also referred me (or tried to).
The advocate has never said she can come with me to these meetings or visits or anything. all she does is writes letters, and has meetings with me. I don't think I would want her to come though, she don't know me well so would end up answering stuff with lies, then I would get confused because of there being 3 people I don't know when it is my turn to speak and then I go quiet and they do the whole meeting based on their lies with me sat there silent getting very angry.

The first time I went to CMHT and got assessed the wait was very quick, I met the first service in mid December, the discharge/referrals and all that happened when I was away from uni for Christmas. Luckily I went to there between Christmas and new year for a phsyio appointment, and checked post wile I was there. I had me assessment with CMHT the first week back at uni after the holidays-so about a month between the two. Very quick. I live in a small place, I am discovering all the doctors and hospitals here are very quick, and very able to do stuff that I would never have had happen before.. So, I hope it's not a year I end up waiting but what happens to the people who are waiting for a year?

I don't really understand therapies. all I know is when I had CAMHS the letter about me leaving there said I would struggle with some kind of therapy (a long word) because of having autism. So, I now assume that's why they would not help me the first time because they know I have autism. I can't then work out what the doctor expects they will do though, he just seems to think I have a need for mental health support because of having autism. It's times like this I wish I don't have it!

Former Member

Gosh- it sounds like you've been let down by an awful lot of people. Could you perhaps ask your mum to put in a complaint about your advocacy worker? Her job is to help you access services in the community and to speak on your behalf- which clearly isn't happening (she can attend meetings with you if you want her there but I can understand why you wouldn't).. I know this may not seem like much help, but have you considered going to the Citizen's Advice Bureau to see if there are funds or services available to allow you to access groups at university or in the community? They have a wealth of information and can speak on your behalf if you need help applying for benefits (I'd imagine you'd be eligible for DLA or PIP as they now call it). That bit of extra funding could go a long way for allowing you to continue accessing groups with the SU, and as I said, the CAB could write letters etc on your behalf and may do a better job than the current advocacy worker you have.

And psychologists unfortunately find it difficult to support people with autism and to engage in therapies because they have difficulty relating to people with autism (which is a piss poor excuse for not providing support). Keep pressing your doctor and hopefully you'll be seen by a consultant soon. Sorry I couldn't be of more help.

Former Member

Nietzsche wrote: »

Gosh- it sounds like you've been let down by an awful lot of people. Could you perhaps ask your mum to put in a complaint about your advocacy worker? Her job is to help you access services in the community and to speak on your behalf- which clearly isn't happening (she can attend meetings with you if you want her there but I can understand why you wouldn't).. I know this may not seem like much help, but have you considered going to the Citizen's Advice Bureau to see if there are funds or services available to allow you to access groups at university or in the community? They have a wealth of information and can speak on your behalf if you need help applying for benefits (I'd imagine you'd be eligible for DLA or PIP as they now call it). That bit of extra funding could go a long way for allowing you to continue accessing groups with the SU, and as I said, the CAB could write letters etc on your behalf and may do a better job than the current advocacy worker you have.

And psychologists unfortunately find it difficult to support people with autism and to engage in therapies because they have difficulty relating to people with autism (which is a piss poor excuse for not providing support). Keep pressing your doctor and hopefully you'll be seen by a consultant soon. Sorry I couldn't be of more help.

It's not that simple as asking mum to do something for me. She's got mental health problems (I've never been told what but from what I keep learning depression is the most likely) so I am classed as her carer (yes, and she is carer for me because of the autism and all the everything else, it's complicated!). All I really do is motivate/make her do the things that need doing, so the last thing I want to do is talk to her about any of my thoughts or problems and then have another thing I need to make her do. It's easier to not bother. When she does do phoning for me half the time she gives up and just gives me a phone, I then get scared and just say 'bye' and put the phone down. so theirs no point.

Never heard of CAB, no idea what that is, or even if their is one near me. Unless their is one that I can walk to then I can't go there, and even if their was I then have to get through being scared of going to somewhere new and new people.
I already get DLA, or my mum does for me, it's not close to how much 1-2-1 support for uni groups is though and mum probably uses it for something else at the moment.

I noticed they weren't that willing to help! It's a really common thing-that autism is not understood. The doctor is trying, asked for another appointment which is good, but I think soon he will realise it's impossible.