Why am I being hurt by a service that should help me?

I hope this doesn't offend or upset anyone, but I just have to get it all out.......
I have been in the 'system' of the mental health team for nearly 15 months now, and I feel my life is worse now than ever. Over the past year I have had so many things happen that have made me feel like I am a complete waste of space.....instead they should be making me feel better. (I have Borderline Personality Disorder and I self harm)

For example:
1) I was shouted at and told I wasn't really that ill by the nurse who stitched up a 6 inch cut to my leg. She didn't stop humiliating me until I begged her in tears to please stop

2) During the same trip to hospital the doctor told this nurse not to bother using local anesthetic when she stitched me up (8 stitches)

3) My Support Worker forgot his first appointment with me and turned up an hour late....he did admit he'd forgotton me

4) My Community nurse didn't turn up at all for our first ever meeting, he phoned me 5 minutes after the appointment time to tell me his car wouldn't start

5) I have phoned the Crisis Team phone line in a very bad state......only to be told to calm down and have a hot chocolate!

6) I phoned the Crisis Team from a public phone before I had my home phone installed, and I gave them the number for them to call me back once I'd run out of money.......he never called back. He just left me crying in the phone booth. When I looked into it, I found out he wasn't even a member of the crisis team but just a passing nurse who answered the phone

7) I have had a Paramedic tell me that if I want to kill myself then no one would stop me.......great advice to give someone with suicidal tendancies

8) I was sent home after my first ever assessment in a daze and tears by the community nurse who assessed me, I was so traumatised by finally talking to someone about my problems that I could hardly walk - I was 'shutting down', but she had another person to see so I was shown the door. I wandered the streets crying in my own little world

9) I went to my local doctors surgery in crisis in tears and was made to wait 30 minutes in a busy waiting room.....I eventually couldn't cope with people staring so I went home in pieces

10) I started Psychotherapy, only to be told after my first appointment that I was back on the waiting list again as the Psychologist has left. I have found out he was sacked from the National Health Service because he was seeing private patients in NHS time. No wonder he wanted to leave 6 week gaps between our appointments. That was 3 months ago and I'm still waiting.

There are lots of other occasions where I have been treated harshly, with little understanding or patience, and as a result my self harm has become serious and I am on an Enhanced CPA.
I really feel let down, and think I'd be better off without their 'help'......but I cannot cope alone either. I have no family or friends, so the healthcare professionals are the only people I can rely on to get me through this illness. I am always polite and thankful, never violent or rude. I have struggled to look after myself for 20 years, but I had a breakdown 2 years ago and eventually admitted I needed help. This 'help' has destroyed the tiny bit of self esteem I had and I have a ridiculous amount of scars over my body - in places I wouldn't have considered cutting before. Now I just don't care who sees my scars....my dignity has been taken from me. I trusted these people with my life, but they have proved that there is so little understanding and support for people with mental illness. My nurse is working to restore my faith in the 'professionals' but I can't forget what has happened this past year. He has put in a complaint on my behalf regarding a crisis team member who was very unprofessional towards me (long story)....I was told she was suffering a marriage break up but it was admitted that she shouldn't have spoken to me the way she did.
But I refuse to give up. I want to get well. I just can't stand the way I've been treated.....and the people just get away with it.

Wow I'm too overwhelmed to answer you Lennie.

what you've said makes me worry for my son
in the psych hospital who was punched
recently!!!!

No one deserves to have their dignity taken
away from them. We hear you Lennie
we are in Australia but we hear you!!!!!

(((((((((( Lennie )))))))))))

I'm so sorry you have experienced some very difficult and invalidating times.

Good for you to continue to stand up for yourself and for what you need. Keep telling them what you need, for you are your best advocate. Somewhere along the way you will encounter people who truly care and understand. They are out there!

Hold on tight and know you have a place to vent to when you need.

Take good care!


sabby

(((((((lennie)))))))))

I had to answer your post....I hear you loud and clear...I am from Derbyshire UK.

I have been through months of hell .... I am n abuse survivor, suffering with depression, dissosiative amnesia, anxiety and ptsd.... I went to my gp over a year ago...lost my job, tried to end it all twice, the last time I ended up in hospital and that's the only way I managed to see the crisis team...they sent me home with a sleeping tablet and their number.

I called them several times and was told, even though I was desparate, to take a warm bath, have a milky drink and try to breathe....at this point I was climbing the walls...they also told me if I was going to commit suicide they would not stop me it was my choice....

One night I was so bad i had to go into the crisis team for an assessment, I begged them to let me stay in there,,,I couldn't face going home, my husband was givig me a hard time for trying to end my life and we were on the verge of splitting up....

I was so frustrated I was banging my head against the wall, they told me there was no need for the drama queen act.....I was numb after that, eyes red and swollen, shaking I didn't care anymore...they sent me home again with a sleeping tablet and told me to go see my gp the next day...they put me on prozac....big mistake....antipsychotics...even bigger mistake,,now I'm on 15mg escitalapram...just been upped...The waiting list is 18 months -2 years to see a psychiatrist,,,,so I have gone to rape crisis and they are helping me through therapy..the nhs are giving me an assessment to see whether I have bi polar and borderline personality disorder on feb 7th...then I go on the long waiting list...I am one of the lucky ones...my therapist is a qualified pdoc.....and I go there for a donation only....I was going to go private at the cost of £200 per hour.....but would never be able to afford that....

You are not alone, I recommend you ask your local crisis team for information outside of the nhs....there are some good counselling organisations, next time I go to therapy at my usual place I will pick up some leaflets to see what there is around the country for you, tomorrow I have to see her in a different town.

Honey I know XACTLY how you feel, I called crisis again the other night only to be told they wont do anything but just to have a bath and a hot drink, breathe and go to bed.....like yeah right....doesnt work like that when you have insomnia love.....

I called the samaritans in the end......they are lovely but just listen, sometimes you need to just see someone face to face there and then......

Know I am here for you, I had a cpn for 12 weeks, like 40 years of torture, ptsd, flashbacks and hurt will be cured in 12 weeks....but she was nice and did help with thingike finances and stuff....I managed to find my family a councellor so they could vent about me and how they struggle...he's been off sick for 6 weeks or more, never heard when he's coming back, so it's all a shambles.......

pm me anytime, I am taking a break from posting right now, but you can pm me anytime or I'll speak on the phone if you're really struggling.......

take care, from someone who knows EXACTLY what you are going through......

Jinyann xxxxx

I must say that I agree that the services supposed to help often do not -- and they sometimes make it seem as though we are to blame. You have to realize that it is not you, it is they who are wrong...

Wow....I am overwhelmed by your replies. Thank you. I'm too emotional to say anything else right now But I just wanted to let you know I've read your replies and I appreciate all of your kind supportive words.

(((((( Juliaspavlov ))))))
(((((( Sabby ))))))
(((((( Jinnyann ))))))
(((((( Pacyderm )))))))

Thanks for acknowledging me....I feel so invisible sometimes

I think that sometimes there is prejudice against anyone with a BPD label, especially those who self harm. Perhaps the caregivers are burnt out, they have false assumptions about folks with these diagnoses, and they get extra judgemental and irritable.

Sorry you are going through this.

Oh my gosh Lennie...that is such a horrible way to be treated...it angers me to no end. You deserve to be treated with love and compassion. I have no idea what I can say to make things better for you. Please, don't give up hope--keep fighting and things will work out. I have had my run with a bad therapist--same thing missed appointments and when we were in session it was just plain bad therapy. It took me awhile to find a good therapist. Please hang in there...

I am sending positive thoughts your way....if you ever are in a crisis and need somebody to listen, please don't hesitate to PM me.

Hello (((LENNIE))). I am sorry that you are struggling at this time with all of this that you are going through. I am in chat usually at 2 PM monday through Friday, if you would like to chat with others that may be able to help direct you to getting the proper help you need in the future. I am in the United States but I am willing to help you if I can with some of the issues you may be having and maybe in devising a crisis plan to help you when you are in crisis, since you dont seem to be getting the help you deserve when you need it the most. Take care Lennie. I have a seminar tomorrow (monday) but I wil be in chat at 2 PM Tuesday if you are available to chat then. Soidhonia

I've had similar experiences so unfortunately I too know your frustration. It's painful when you finally give in and turn to the medical professionals for help only to be let down worse than ever before.

The medical systems are overloaded and in their own state of crisis and sometimes we are the casualties. You said you have a nurse who is advocating for your interests. That will help. I know other people who have turned to their members of parliment to get attention to their needs. Thier theory is that the squeaky wheel gets the grease so they never give up squeaking. It works for them. They get what they need when they need it because no one wants to listen to them go off on them.

Sad but true.... sometimes we have to fight for what we need. The irony is that it comes at us when we haven't much fight to give to the battle. Still we have to push on to get the help we need and find the workers who can do the job you need them to do when you need it. It's like going through a maze blindfolded but it is what it is.

Some of us can't operate in that system. Some of us do initially get sicker jumping through hoops, listening to uninformed advice, dealing with inhumane bureaucracies, fiddling with expensive and addictive medications and chasing doctors for new scripts. It takes time and a huge amount of effort to create a support team within the health care system. Some of us can't do that work of pushing and giving effort we don't have. No way, no how can we survive the bureaucracies. I have my own horror stories to recount as my rationale for 'opting-out'.

Some of us either find private help or we return to self-help and alternative approaches outside the mainstream system. That would be me. But it's not for everyone. There is an added risk to dealing with MI symptoms without the usual medical supports. There is an added stigma attached among medical professionals and among other MI's towards people who seek alternatives to the mainstream medical system. As a consequence of me not being able to function in the system I will never qualify for disability benefits because I am 'non-compliant'. I will never qualify for social assistance because I can't get a doctor to 'verify my un-employability'. I will never qualify for a lot of public services and benefits because I don't get mainstream medical attention for my MI. It has also cost me friends and family too. They think I don't want to get better. For them it's all about 'get on the meds'. They don't support the alternatives so they will tell me 'you are on your own unless you take meds'. They think tough love will change my mind.

I do see a doctor to maintain treatment for my thyroid condition. I always know I can call the mental health office when in crisis and maybe someone there will be able to help me get through the worst bits.

Therapy is a very personal thing. What works for one may not work for another. Becoming educated about MI has become my greatest asset. Finding PC and other support forums for peer support has also been a great help for me. Faith and spiritual beliefs have been especially helpful for me as well.

I'm glad you have someone advocated for you. That will be a great help. So often that's all it takes. Someone who knows how the system works --- working for you.

Take good care..... blessings..........

(((hugs))) Unfortunately, your story is not uncommon. Try not to give this system human attributes, because it doesn't! You have found that out. It is a mechanical way to try and take care of or at least keep track of patients needing help that just isn't there; it has no feelings and cannot think for itself. This way of thinking might help you feel less attacked and more of another person caught in the mechanics of the poor system.

yea.... sky.... it makes one feel like staying as far away from the mainstream medical system as one can get.

It's a terrible battle that is costly for everyone especially people with MI. The needs of a person with MI are magnifed by the dysfunctions in the system. Warning signs go off like crazy around me when I go near a medical facility or professional. "Warning,,,,, will take 6 weeks for a rescheduling of your appointment to an undetermined date..... with a steady stream of insults and abuses to keep you busy in the meantime."

I wish there was a way to navigate the system painlessly. It becomes even more important for one to have a core belief system and 'regular people' in your life to cope with getting help.

I also understand exactly what you're going through.

I think you're very brave for posting this.

Wow.....thanks again for your replies and support
My nurse has helped me.....but he has also caused me some pain too. For example - the time when he arrived an hour earlier than he said he would....I'd popped to the shops.....so instead of waiting until the appointed time, he just posted some dressings and a note through my letterbox and went away. When I got home from the shop and found a note and a bag of dressings on the floor......and realised that I wasn't going to have his one to one support that day, I was very upset. He apologised, but the damage was done. He had no valid reason to come an hour early, he knew he was early....I just don't understand it. This is the same man that takes me to the pub and we play pool and have a laugh But on Xmas eve he visited me and told me he didn't get me a Xmas card because he didn't think I'd be bothering with Xmas because I was on my own. I'd sent him a card the week before and he phoned to thank me for it, so he knew I was bothering with Xmas. (My Support Worker sent me a card.....the only one I received this year) I spent the rest of Xmas eve crying and wondering how he could think so little of me to be so hurtful on Xmas eve. AGAIN, he apologised and said he regretted his actions.....but the damage is done.
He visits me weekly and phones me every week day in between but I'm getting really wound up before the appointments because I fear he'll do or say something to upset me again. I've already stopped seeing the surgery nurses to dress my self harm injuries and dress them myself because I got sick of being 'tutted' at or asked why I did it in a patronising manner. So my nurse supplies me with dressings. I'm learning the hard way that just because they are trained healthcare professionals it doesn't necessarily mean they are perfect and get it right. It's maybe ok if people make mistakes when dealing with someone who has a boil on their bottom.....but this is an illness that deals with life and death - and carelessness can do some real damage.
Anyway.....my nurse is coming to see me today at 1.30pm. I really don't want to see him......but I know I should. I have to be a good little compliant mental patient don't I?

*Steps down from soapbox and heads for the bath to try to get rid of 'crazy lady hair'*

P.S - I haven't self harmed in 15 days !!!

((((((lennie))))))

Aww so sorry you went through this at Christmas....or any other time.... they are first hand shits in this country when it comes to mental health....I know....some are good, but they are few and far between....the NHS sux, we pay all those years for it through our wages and what do we get? patronising losers who dont do their job properly....

When I am better I am going to go into mental health care myself...become a psychologist for abused kids/teens and start with volunteer councelling when I have done a course.....

this is keepingme going, I f I can be one of the caring ones who helps at least a couple of people in my life I will have done some good.....

pm me anytime, as I said I am in th UK and I can listen, my shoulder is your shoulder to cry on or vent or just to be here for you

love, Jinny/Kerry xxxxxx

(((((Lennie)))))

we aren't in the UK, but we have had a lot of experience with so-called mental health professionals in Australia, as well as having been one.

don't let them put you down !!!!

just because they have training doesn't mean they have empathy some ppl aren't suited to this work !!!

don't be so compliant that you don't insist on respect, that won't help you or them, they need to learn or get out of the field.

PM us anytime, even if you just need to vent & rage !!!!!

Once more, thank you all for your kindness xxx
My CPN (Community Psychiatric Nurse) came for his weekly visit this afternoon. I know I'm an idiot - but I can't stay angry with him for long.....I think I have a little crush on him
Anyway...I had a long chat with him about all of this and he really did understand and reassure me that he did genuinely care about me. He agreed with many points I brought up, that things could have been handled better and that I have been let down by some 'professionals'. He did also remind me that BPD can make me see things as they not really are - or something like that......and I agree. I think I have been hurt and let down by a few 'bad' medics and I am in danger of tarring them all with the same brush and expecting them to let me down. I know I can be oversensitive and critical of others. I grew up caring for a mentally ill mother and always saw myself as the carer and thought I would end up caring for others - but now I find myself needing the care I feel like I've failed.
BUT - this does not change the fact that I have encountered some very uncaring and unprofessional people along the way......everything I have said is the truth, sadly. Maybe it's not too late for me to one day help others, but right now I have to concentrate on looking after me. My CPN and Support Worker are good guys, I have to remind myself of that. They have made mistakes - but at least they are sticking with me and trying to make amends. Every relationship in life has it's good times and bad times - relationships are a risk. I have to try to let go all of the bad experiences with the other health care professionals I have encountered over the past year - otherwise I won't get well. They have to live with their own conscience and hopefully something will happen in their life to make them see how wrong they are to treat people in such an uncaring way.
I am a survivor of paedophiles, domestic violence, child abuse, divorce, physical illness, an eating disorder and many other bad things.......I won't let the bloody National Health Service 'unprofessionals' ruin my life!!!!

Thank you for the offers to PM you......the same applies to you, I'm here to support others too

Take care you lovely people xx

I went to therapy today and my T said to google UK rape crisis or domestic abuse places that are in your area, she gave me a leaflet but it's only for derbyshire......the womens centre has places all aroung the uk....they are fantastic.....good luck, it's better than waiting for 2 years like they told me!!!!!!

hugs, Kerry/Jinny xx

I'd just like to add, that there are therapists that are private that work with a sliding scale. I eventually went private and pay £35 per week for twice weekly sessions. Perhaps you might look into private. I know how frustrating the NHS is, with all its other areas that it trys to meet, and sadly doesn't really have the resources to offer a good enought service to clients. Hope you find some help soon.

many therapists take unpaid cases (((((Lennie)))))

& like jinny said, try the women's centres, they might only give you limited sessions but they should happen quickly.
the CASAs here only give 6 t sessions, but then they refer you on.

Good luck & best wishes to you.

I have experienced some of the same treatment from medical professionals as you have, Lennie, and I sometimes wonder what draws individuals into these professions, or what makes them stay in these professions after they have lost their ability to be compassionate (which I prefer to think is due to sensory overload) to those in pain. I have also noticed that those who are trained in the "physical" care of people just cannot grasp just how painful life truly is for those who suffer mentally. It is much easier to see the physical pain rather than the psychic pain.

I believe it is only a rare few who can truly deal with people with mental illness, even though some (most?) may have a high degree of interest and aptitude in the field of psychology, etc. But having an interest is entirely different from actually working in this field. I don't believe many really understand what is involved with dealing with real people as opposed to just studying about mental illness as they would in a classroom setting or learning through "case studies."

I also wonder how many students have chosen these professions (especially psychology) to help sort out problems in their own lives.

With that said, I admire your courage and stamina to keep going.

It is not easy finding a good therapist and it is even more difficult to find one that you can "click" with.

I wish you all the best in your endeavours to find quality care. I do know it's out there, so don't give up. It just may take awhile to find it.

Part of me wants to go through the phone book and call all the therapists to see if they can help me. But I struggle to talk to anyone these days without crying like a baby. I feel so kicked in the teeth by this all. Last night I had to put myself to bed early because I was very angry with it all and wanted to put myself out of harms way. My mind went into overdrive - I was a bit psychotic or something and I was ranting and raving about the whole meeting with my nurse yesterday. Initially I felt good for talking to my CPN about things.....but then I got annoyed in the evening that nothing had changed, then I remembered how the meeting really went. I was waffling on as I do, using humour to mask how I really feel sometimes - and my nurse told me to 'shut up'. I laughed it off at the time, but I'm upset about it now. My father used to tell me to shut up when I was a kid whenever I laughed or acted silly......yesterday brought it all back to me. I think my nurse said it in a lighthearted manner....I think, but now I'm concerned that I've annoyed him. Also I am disappointed because my nurse promised to talk to the therapist I am waiting to see as they work in the same building. He was going to try and find a date for my first assessment with him and where our sessions would be taking place.....but a week later and my nurse still hasn't spoken to him because he said he hasn't 'bumped into him in the corridor'. I asked if he could make a quick appointment with the psychologist to ask about me, but he said he wouldn't do that!!! What a silly idea of mine.....it's much more efficient to hope to bump into them in the corridor isn't it!??!! He said he might email the psychologist with his questions, so I guess I'll just have to wait..........
Just like I waited over 3 months for my Care Plan to be done.

Another experience I had.......I was taken to A&E by ambulance with a large cut to my arm last year. The doctor who saw me examined my arm and even questioned whether it should be photographed as the cut was so large. He then said to me "Well something this big should really be stitched in the operating theatre.....but" then he shrugged his shoulders and proceeded to stitch it himself. I am now left with a scar 4 inches long and nearly an inch thick on my forearm.....I'm sure it would be half the size if it had been treated properly. Also my arm is numb and tingly. My GP thinks I may have Cubital Tunnel Syndrome, but didn't offer me any further treatment. They just don't care. Obviously they think that I'll just cut again so whats the point?

They really know how to make someone feel cared for don't they?

Incidently I asked my nurse yesterday why he chose to be a nurse - he'd told me he used to be a Bar Manager. He said it was because he was dating a student nurse at the time and she got him into it - I found that amusing

(((Lennie))) You might be able to call for consultations with therapists (or even do them on the phone) by writing up a script first.

The first draft just write all the things you want to say. Don't bother with thinking about whether you really will or just how you should say it, first focus just on all the things.

Then go through the writing and underline or circle or highlight what you think are key things, topics only.

Now, go to this PC link http://psychcentral.com/lib/2006/int...our-therapist/ and make your outline of how to do this.

Good wishes! Take it each step along the way, tell yourself you don't have to actually call, but will finish this outline. Once you have the outline and feel prepared, then you can decide if you will call, ok?

I'm sorry to say it is a sham in the UK....mental health. The crisis team are completely useless, even my therapist says the same....please look in your directory for a womens centre and go from there...they are fantastic....your crisis team SHOULD put you in touch with them, I am putting in a complaint about MY crisis team suggested by m CPN....iven she thought they were terrible, the way they treated me.....good luck, you are welcome to pm me

Jinny xx

I just wanted to finish my complaining with a BIG THANK YOU to the lovely people who posted supportive messages to me about the things I shared with you. I feel alot better for offloading my annoyances and just hearing that I have been wronged - I was beginning to think I deserved the bad treatment.
A crisis team nurse once told me that online friendships were fake and a waste of time..........I didn't agree with him then and I certainly don't now.
Wishing you peace, love and happiness