View Full Version : NHS not helping me?
Hi guys,
I've been struggling on and off for 5 years with depression and anxiety. In the last few months, I've been going through one of the most severe episodes I've ever had which is leaving me incapacitated. I have extreme anxiety 24/7 and am extremely fatigued all the time. I'm really struggling to cope minute by minute (for more symptoms that i have, look at the post i wrote the other day)
I've been to the doctors numerous times who will only give me diazepam and zoplicone. I'm on citalopram which isn't working and they won't change it. I'm on the waiting list for IAPT which I've been on for 4 months now. I've asked for a referral to a psychiatrist or the CMHT but they keep on dismissing it. I'm not getting any better, probably getting a lot worse and I've considered going to A&E a couple of times. The anxiety is unbearable to live with. I had an episode similar to this 5 years ago which, somehow, i managed to get through on my own. What can i do to get treatment? I say to the doctors that I'm not as calm as i appear to them and i am struggling every single minute of the day
---------- Post added at 10:58 ---------- Previous post was at 10:47 ----------
Just to mention, the IAPT service I've been put forward for is the 6 sessions of guided self help which I'm almost certain will have no impact on me because of how bad i am and how long I've had it. I've been told that the most intense psychotherapy has a waiting list of over a year...
Is it possible for you to pay for private counseling?
I've been seeing a counsellor for about 3-4 months. She's really nice but I've actually got a lot worse whilst seeing her (my deteriorating condition isn't due to her). Because I'm out of work now, i really can't afford to do it anymore as well.
I worry that i need to be sectioned. I feel so severe. Even the littlest of tasks is nearly impossible to do. My mind feels so fragile and i just feel like i'm getting no help which is making me feel more hopeless
I know it's not a perfect solution but can you get hold of books on CBT or anxiety management? I've found them very useful at times.
There might even be some youtube videos which can help.
I've tried those but unfortunately, i don't find them very personalised to my situation and it's incredibly hard to do any of them when I'm in this state. I'm actually feeling a bit calmer in the evening for no reason. It really is confusing me :s
It's nigh on impossible to distract yourself in this state. Just sitting still for 5 mins is a major achievement
I find posting on this website very helpful...
Yeah this website is brilliant. The people on it, like yourselves, are really understanding and kind. It's invaluable to have somebody tell you everything is going to be okay sometimes
MyNameIsTerry
14-12-15, 23:24
It's the same in my area, red tape & inflexibility.
My GP said I needed CBT and when I got there I was told "the system" is that you have Level 2 services first such as Guided Self Help. The person assessing me said I needed CBT but that's just how it works. Yet on this forum I since seen people told they can miss that stage and go straight to CBT so there are obviously issues with some providers playing the political game by using the levels to manage their numbers rather than provide the right care.
It's 12 months for the CMHT minimum around here. There is an additional issue too in my area that if you are put on the CMHT waiting list, they take you off the IAPT one. Also, if you start Level 2, they don't put you on the waiting list for CBT until you finish and this adds more months hence why I feel they misuse NICE guidance as a management tool. I had to complain about that because they admitted Level 2 wouldn't be enough so I expected I was in the queue for CBT whilst having that short therapy.
Hey Ssmith.
I was on an IAPT waiting list while I was suicidal last year. I'm not suggesting this as a strategy for getting attention, but I managed to get an appointment a few days more quickly because I had felt suicidal and had rung up the helpline that they gave me. Did they give you a helpline number to ring? I think it's a local mental health helpline, forgot what it's called.
Things I would do if I were you:
When feeling extremely unbearably awful:
- Go to A&E. Don't feel bad about it - mental health is as serious as physical health. You might encounter untrained nurses who are unsympathetic, yes, that is a danger - but you also might get guidance to calm down. Sometimes things get so bad that it is worth taking the risk so that you can calm down - when things can't seem to get any worse.
- Ring the local mental health helpline number if they gave it to you
- Ring the Samaritans (it does charge you a bit if you call from a mobile phone)
- Ring a friend (but try to not ask for more than any one friend can give)
When feeling awful:
- Be super nice to yourself. Forgiving. Do activities you enjoy.
- Find as many opportunities as possible to find joy.
CBT is valuable. One thing I'm not sure you know is that they won't give you any other kind of treatment until you've tried CBT, because it does help a lot of people. But they insist that you take 3 months in between CBT and another kind of treatment so that CBT training can be practiced in your daily life.
No matter how bad you are, I'd recommend CBT. There's some really useful habits to learn that do make a difference.
I went through a bit of a struggle myself - I did 13 weeks of CBT (I'd signed up for 6 weeks, they had to keep extending it because I was so bad). Then I waited for ages for an assessment when I moved to a different borough, and had a traumatic assessment process, and then they didn't offer me treatment because they are underfunded - and they knew they couldn't offer me treatment in the first place. Where you live has a massive impact on what treatment they can fund.
What I ended up doing was going to a psychotherapist who didn't charge me anything until I got a job, and then she charged me only what I could afford. If I can get this, so can you. Lots of psychotherapists do pro bono work. Can you look for psychotherapists in your area? Can you ring them up and see if they might take you for a nominal charge?
My friend who's also suffered with depression has found somewhere that charges her £10 a session - that's not too bad, considering that some places charge £70.
Another thing that might be useful for you to know is that if you're in a really truly terrible headspace, you can't actually do any of the long term self work that is going to make your life better long term. You need to get yourself stable enough to make the space to do the self work. If you feel that bad, it's probably because of something that's happened in your life that you need to confront. There wouldn't have been much point in me going to psychotherapy while I was off my face feeling suicidal - I wouldn't have been able to think about all the stuff that's made my life bad. Maybe not everyone feels the same way, but I'm glad that I went to CBT before I went to psychotherapy.
They probably won't let you do CBT at the same time as psychotherapy - so if you do end up in psychotherapy, you'll probably be taken off the CBT list.
Hope this helps in some way!
Thank you for your in depth replies Terry and Lior.
Hopefully I'll see the step 2 guided self help service in the next few weeks. I rang them and they said they haven't forgotten about me and that i should have an appointment just after xmas. That will make it 5 months after i was initially refered.... For a bit of self help! In decades, they'll look back at these times and find it unbelievable that people with mental health difficulties face months or possibly even years to wait for treatment.
Lior, I'll keep a hold of that list you've made and use it as a safety net. Thank you all for being so understanding when I'm like this. Without people like in this thread, i would genuinely feel a lot more hopeless than i currently do. I can overcome this and i will
MyNameIsTerry
15-12-15, 09:28
You've got plenty of people who understand all the struggles with anxiety as well as just getting help for it so just talk or vent or whatever you need to. It wound me up something rotten having to chase my own GP and therapists around at a time when I needed less stress but once I got started with the IAPT service they were very good at communication.
Sadly, Xmas is going to slow these services down. It's not too long now though and people on here can support you through it.
I got referred for CBT straightaway but I'm not sure how much you could absorb in the severe anxiety state. Actually staying seated and in the same room for a session could be really difficult- I think it's essential to have less anxiety when you start these sessions. In my opinion guided self help would be far too lightweight for your needs.
I definitely understand the not being able to sit still. At my worst, a few weeks ago, i was pacing up and down for days. It wasn't anxiety, it was like i was being driven by something. I initially put it down to a bad effect of fluoxetine which i was 4 weeks into. For me, anxiety, i can gradually calm down from. This was something else is and is the scariest thing i have ever experienced. It eventually calmed down a bit over time but it scares me just thinking about it.
The tiredness affects me more than anything else as well. I'm using zoplicone at the moment short term which seems to work, but i look and feel exhausted. I have the biggest bags under my eyes and for a 25 year old, doesn't look very attractive. I have a doctors appointment next Tuesday. I'm going to demand something be done now instead of 'just waiting to see if i get better' as they put it. I've had to wait for 5 years to see if I'll get better and never been referred for specialist help and i feel like it's about time i became a lot sterner and assertive
hey ssmith am a 25 year old and all.... and terry up here is brilliant he saw all my post from my worst to my progress ... i was the same ... so bad sweating and couldn't stay still went to a n e 4 times in 3 days... eventually what helped me was sedatives .. not the best route but diazepam was good enough to calm me down enough to learn more and more on how i would cope and i found joy in things slowly but surely after a month on it i came out better but not fixed .. it taken me a year to get to comfortable place, i still have episodes but life defently worth living, i didn't work when was at my worst either but slowly but surely am working again and have a life... i know it hard to see the light at the end of this tunnel but it will happen for you!
MyNameIsTerry
16-12-15, 10:09
Thanks James, I really appreciate that mate! I hope all is well with you and your family.
ssmith - my Guided Self Help was over the phone and I did it standing in my kitchen looking out the window. I couldn't sit still through it back then.
I think it's very likely it was the meds. I had adrenaline rushes and pretty bad agitation when I started Duloxetine. I would wake up to a rush for about 2 hours being scared but wanting to run a marathon sprinting (think the lift scene in Crank) and then I would panic if I had to sit down for hours & hours and would be rocking against the kitchen doorframe. 10 days of that was the worst I've ever been by a long way, courtesy of Duloxetine. It was like nothing I had felt before, like you.
Pulisa knows what agitation is like and how it's hard to do much of anything and if you do, it's all now now now and lacking in patience. If you need to take a break at any point, just tell them, they will understand.
So I've just come back from an emergency appointment that I've booked this afternoon. I was in a state and mentioned how bad i am. I've been told to up my dosage of citalopram as I'm probably not well because I'm not on a high enough dose. When i mentioned that i had already been on a high dose without it working and tried all SSRI's without much success, he told me they will be working, i just need to tell myself that to get better.....
I asked for another referral to the psychiatrist as this has been going on for years and getting more and more severe, to be told that i don't have the option. I literally feel like the only way i can be heard is by going to A&E.
Feeling really deflated and down about this. I'm sick of not being treated and being banded around SSRI's by GP's for 5 years. Is there anyway i can put in a complaint or demand to see a psychiatrist?
GPs are not mental health specialists.
I have also spent years being told SSRIs are working, and just to give it time. They do not work for everyone, and sometimes make things worse. I know all about not being heard and how difficult it is to get expert help. The trouble is, the longer things are left, there is a possible risk things can deteriorate.
Look at Liors list, it is useful. A and E is for emergencies. That includes mental health emergencies as well. Use it and you will hopefully be listened to and referred to a specialist who can guide you .
Don't give up even if it feels like a battle.
Go to A&E-you will have to wait to see the duty psychiatrist but you will be seen and assessed. Go before the Xmas party fall-out tomorrow night. It's the only way to get taken seriously
Thanks for your responses guys. I don't feel like i'm in an emergency at the moment, plus the standard 4 hour wait puts me off. But i think I'll have to go that route soon if nothing changes (got another appointment on Tuesday with a different doc).
It really angers me that due to trying to save a bit of money, lifes could be cost. I, myself, wouldn't do anything like that, but i wonder how many people cry out for help and don't get it
Is the NHS really as bad as I hear it is?
When it comes to mental health, yes I think it is. There is just not enough funding or understanding sadly.
I had a severely slipped disc last year bordering on cauda equina syndrome which is an extremely serious condition. I went to A&E after becoming paralysed in my left leg, had an MRI, got sent by ambulance across the country to a specialist unit, had my own room and had the emergency surgery all in 24 hours. The NHS was absolutely brilliant then and i even sent in a letter commending how good they were and if it had not been for their fast action, i would be in a wheelchair now. I made a full recovery, albeit missing the majority of a disc in my back.
When it comes to mental health services, they are shocking, well in York they are. We had our psychiatric hospital shut down within 3 days because the roof was collapsing, despite £2mill worth of repairs going in to it. Inpatients were sent across the country but the majority of them were released back into the community. Imagine that happening in any other medical field. It would be main news and there would be uproar. I have always found the NHS pathetic when it comes to mental health services. It's a brilliant health service everywhere else, but they are too underfunded and not enough specialists to cope. It makes me really angry.
It's a political thing. It's a funding thing. And it comes down to what's valued and what's seen as valuable.
One day we will be in a culture where mental health is as recognised as physical health. To get there, in my opinion we all have to be taking action by talking about it and learning about it. I'm really happy that conversations like these are going on, on here - together we are sharing knowledge and this is how we change the world. Let's keep spreading our experiences.
MyNameIsTerry
19-12-15, 07:51
So I've just come back from an emergency appointment that I've booked this afternoon. I was in a state and mentioned how bad i am. I've been told to up my dosage of citalopram as I'm probably not well because I'm not on a high enough dose. When i mentioned that i had already been on a high dose without it working and tried all SSRI's without much success, he told me they will be working, i just need to tell myself that to get better.....
I asked for another referral to the psychiatrist as this has been going on for years and getting more and more severe, to be told that i don't have the option. I literally feel like the only way i can be heard is by going to A&E.
Feeling really deflated and down about this. I'm sick of not being treated and being banded around SSRI's by GP's for 5 years. Is there anyway i can put in a complaint or demand to see a psychiatrist?
Yes, my GP spun me this lie too. When my current med wasn't helping he said he couldn't prescribe above the standard dose (a lie as evidenced by other GP's doing it for people on here and local trust docs I have read since) and that I could see a psychiatrist but it would be on a private basis! I thought this was dodgy at the time and nowadays I know it was a blatant lie.
The fact is, if you are in England or Wales, the NICE pathways cover referrals into Community Mental Health Teams (CMHT) and these are the services that existed prior to IAPT coming along and sitting between them and your GP on the stepped care model. Your GP always has the option of referring you to the CMHT but our mental health issues go through IAPT first as a direct referral before this to CMHT has to be based on something severe as those services are there for immediate referral for more complex needs such as schizophrenia, bipolar, etc so we don't normally get to them for some time after the IAPT route.
The NHS has a complaints policy. You can either complain to the surgery of if you feel you can't do this, there is an independent procedure. Be careful though, the NHS has been quite sneaky and put a clause in about how the independent can't be used afterwards so you only go to the Ombudsman or Parliamentary compplinats procedures:
http://www.nhs.uk/chq/pages/1084.aspx?categoryid=68
---------- Post added at 07:51 ---------- Previous post was at 07:39 ----------
Is the NHS really as bad as I hear it is?
I'm surprised you don't get the glowing "jewel in the UK's crown" image the NHS likes to portray outside of the UK. People in the UK have a very different view and have had for decades.
Mental health services are dire. Until IAPT came in a few years back you would wait a minimum of 12 months just to see anyone other than the 10 minutes your GP could give you. Now the wait can be less than 3 months but if IAPT can't help you, and they only do non complex mental health (so a lot of us on here struggle GP's can have next to understanding of antidepressant medication and even now there are still people hooked on Benzo's courtesy of GP's despite the current prescribing guidelines being more than 15 years old on addiction with those meds! For many of us asking your GP which med is best for you is the same as asking your postman. But some people do have really good GP's it has to be said.
For physical issues I walways thought they were good but times change. If you have cancer or something equally life threatening they will sort you out with the best care. Anything of a more elective or chronic nature and you can find them ropey. Go to A&E and you will get the best tests & care going but if they transfer you onto the general wards you will see the standards slip very quickly.
My younger cousin had excellent treatment in A&E at the local hospital and when they couldn't help him any further they transferred him to Birmingham Children's Hospital which is a specialist centre in the UK, and one of the best! They were brilliant and he is alive with very minimal brain damage with a family and a responsible management career.
Now contrast this to my elderly mother's pneumonia. 20 minutes on the phone to the non emergency phoneline they tell us to call (111) to be told it was a suspected heart attack (20 minutes!!!) and an ambulance turning up very quickly with a different set of notes. Then the out of hours GP turned up and told us to never call 111 and only ever call 999 for the emergency service, a complete contradiction to what the NHS tell us to do which shows how GP's think the service is a turkey. She was sent to hospital via the non emergency ambulance service by some very hlpeful nurses who came out and ambulance workers. She had all the tests in A&E and was looked after well. Then she was transferred into the general ward and the conditions were very different. Patients with dementia in distress being ignored by nurses and I can remember the sister saying after several days that she had been on meds that had a dangerous interaction with meds she told them she already took...basically they didn't check first. Luckily she didn't experience a dangerous interaction.
So, anything life threatening, they are great. Beyond that, the crown slips.
Most Mind groups will offer Counselling / Psychotherapy for free !
Hi Tobz,
The thing is that I'm so severe at the moment, I can't take part in psychotherapy. I'm getting a few hours of sleep a night and this has gone on for months. I'm so sleep deprived, I'm struggling to function and am now pretty much completely housebound. I had a doctors appointment last week where I begged and begged for help, only to be told there was nothing they could do and that I would have to wait for my referral for the CMHT which I'm still waiting for now, 4 weeks after being referred. It really is a joke and makes me angry that they will only ever act urgently when someone is a risk and that shouldn't be the way. I have no intention of hurting myself, and the doctors know that. Because of that, I'm not treated as urgent. I've even thought about lying so that I can get help quicker.
In 7 months, I've been tried on 2 medications, neither worked, and been referred to IAPT who told me a few weeks ago I would have to wait an additional 8 months to see anybody. It's ridiculous . A few months back, I might have been able to interact with psychotherapy but I feel I'm too bad now and that the only route to get me out of this deep deep hole is medication. I look a state, when usually I'm a well kept, proud 25 year old. I have quite a wide circle of close friends, none of which really know what's going on and I've hardly seen any of them with how bad I've been. A few days ago, I decided to write a letter to my MP describing my situation and how in the 21st century, no-one should have to wait this long to be helped.
Sorry for ranting. I'm just really angry by it all. I've been left with very little support by anybody, espcecially the medical professionals. I've had extreme tiredness for 7 months which I've never had before. I've had blood tests but not once have I been referred for a sleep study or anything like that. I just feel like they want nothing to do with me when all I want is to get better
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