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Please, I’m desperate. Can somebody help me?
Posted Thursday 28 October 2010
This guest post is published on the day Mind and the We need to talk coalition start discussions with the Government about how best to ensure that the new money promised for talking treatments is spent properly.
I had a huge wake up call a year and a half ago, when I discovered that the mental health care that I needed simply wasn’t available in the county I had moved to. I had moved just before I had my baby boy to be close to family, and in preparation for this, I had ensured that my notes had been passed on to the new health teams and that my GP was aware of my history. I then had a very traumatic birth experience with long lasting physical consequences and then dropped into a severe bipolar depression complicated by post-traumatic stress disorder (PTSD).
What happened next was…. very little. Recommendations for long term or urgent psychotherapy came to naught. Meds reviews were shifted between individuals and never produced any action. The acute ward was not appropriate for a mother with a tiny baby. There were no beds available in any specialist wards. The waiting list for the only psychotherapy on offer, a short course of cognitive behavioural therapy (CBT), was at least seven months long. Three months after giving birth, even with an urgent referral from my GP, the earliest the psychiatrist could see me was another six weeks. Having asked for help from all and sundry only to be told I couldn’t have any, I gave up hope of ever recovering and tried to take my life.
Fortunately for my tiny and beautiful son, I was unsuccessful and after a stay in a high dependency unit, I was discharged into the care of my family until a bed became available at a Mother and Baby Unit out of the area.
I spent three months there while medication and physical health issues for me and my baby were addressed, therapies begun and more recommendations made. During this time, I discovered that in the neighbouring county there were all sorts of support available, planned and integrated treatment approaches, counselling, psychotherapy, social assistance, arts therapies, support groups, and specialist psychiatrists. Upon discharge back home, I once again found there was nothing available to me other than contact with a CPN and another psychiatrist on rotation. It took eight weeks from discharge to even get an appointment with this psychiatrist due to ‘staff holidays’.
I had to give up work. I tried every avenue available with full cooperation from my employer to make adjustments to allow me to continue my beloved job, but I couldn’t cope and was forced to resign and apply for Employment and Support Allowance. I was in a vicious cycle of needing to address my continuing issues through psychotherapy to start healing, but not being able to get it, and knowing that this in itself was exacerbating the depression. My family is now paying for me to have private therapy, which started immediately and gives me some hope that I may be able to resume my life sometime soon.
So, why were NICE Guidelines not met? Lack of resources. I would have received CBT in primary care, but the resources for secondary care have been consistently cut in my area. I feel strongly that if I had been able to start treatment within a couple of months of needing it, I would not have lost hope to the extent of feeling the only way to stop the pain was death. Probably I would have been able to deal with the issues which 20 months later are still affecting my everyday life; I certainly don’t lack the motivation to do so.
Maybe then hospitalisation, at great expense, would have been avoided. Perhaps if some appropriate support had been on offer, I would have recovered quickly and been able to successfully return to work. I might not have spent my life savings and got into debt trying not to default on the mortgage, my family may not have suffered financially trying to support me, I would not be relying on benefits, I would not be feeling unsupported and ignored, not to mention angry and appalled that a life threatening illness can be routinely left untreated because there are no resources to treat it.
More importantly, the first 20 months of my little boy’s life have been irretrievably affected and they shouldn’t have been.
I joined in Mind’s We need to talk campaign because I need to have hope for my own future, for my son’s future and because for anyone suffering from a mental health condition it is totally, utterly, unacceptable that they are not properly treated. I sincerely hope that the government promises of extra funding are followed through, and that appropriate, effective, timely treatment is provided to everyone equally: chronic or acute, new mum, child, adult or pensioner. Measures need to be put in place to ensure that health authorities are able to follow or exceed NICE Guidelines, that resources are allocated not just to primary care, but to secondary and tertiary, and that mental healthcare is not a postcode lottery.
People are dying because our NHS does not have the ability to treat them. To the politicians, NHS service commissioners and anyone else with the power to make change happen: please help by following through with your promise to increase funding.
Jenny Frost is a service user whose story appeared in our We need to talk report.
22 Comments
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As a carer for my son who is at last is having a course of psychotherapy after 9 painful months of watching him deteriorate and fighting and pushing to get him the help he so obviously needs, I feel for you, the system is indeed flawed, how many people have taken their own lives, I wonder because they haven't received help soon enough.
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There just isnt the right support. The problem is that the government do not always see or understand what 'the people' of our county do, how we life, the cuts and sacrafices we make on a daily basis.
They just dont realise that people need help and support to deal with the stresses not only in our personal life but in our everyday life dealing with the hits the gornment make on us.
When I needed someone to be there, there was noone. I was patched up from hospital, given a few intense 'crisis appointments' and released back into the world. No CBT which I tried so hard to get or help from my doctor or the NHS.
A plaster and a pat on the shoulder from our government and health services do not suddenly make everything right and heal our socities wounds!
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I agree. I was diagnosed with Borderline Personality Disorder and PTSD at the beginning of this year and have been put on a waiting list for psychotherapy, which could take up to 2 years. In the meantime I am expected to just carry on, take medication and try not to hurt myself.
It is imperative that something is done to provide access to therapies sooner to prevent further problems with mental health patients. Private therapy is expensive and puts additional financial stress on already vulnerable people.
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I live in Wales and have been ill with PTSD since 2008, following my survival of an attempted murder. There is no trauma therapy available. I have been in crisis numerous times. I've had one overnight respite break and twice spent time in a police cell, wearing nothing but a quilted suit. I have been told to book myself into a travel lodge if I need a break. The police psychiatrist wrote and told the MH team that I was a serious case over a year ago. I have a two year wait still for psychotherapy. I was only allowed to see a counsellor at the GPs surgery for 9 weeks last year. My psychiatrist told me 2 months ago she would arrange for me to go back to the counsellor - I am still waiting. I have no CPN assigned to me and no information on what to do or who to contact on my bad days or nights, other than a helpline who have a time limit on calls. I have to rely on the samaritans who will allow me to talk for as long as I need to. Since my last crisis in August this year I see my psychiatrist once a month. Prior to that it was once every six months. My GP kept forcing me to go to work until I couldn't cope any more and lost my job. While working I rarely managed to work a full week. Working a whole day was often a struggle. I am sensitive to a lot of the antidepressants and citalopram gave me a mild heart attack April 2009 along with other side effects. I have recently been enrolled with a charity which has a more holistic approach to recovery working alongside (supposed) talk therapy and medication. This is not working for me as they keep trying to empower me with responsibilties which I am not able to cope with. I just about manage to attend the centre once a week (sometimes not at all). Earlier this year they tried me with CBT but it caused flashbacks and I had no support to deal with how the CBT made me feel until my next appointment. I very often feel lost and alone in all this as I have no family carer/helper either. I've had bipolar type episodes and have gotten into debt spending money on people who have taken advantage. I have been hypsersexual and out of control as a side effect of medication. I over-react in stressful situations, sometimes making a public spectacle of myself. Everything that I have done or experienced since 2008 feels like added trauma and I now find it easier to just stay at home and avoid the world. Because I am not a complainer and more of a tryer I feel I am being left behind in the care system.
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To my knowledge this is not top priority on the agenda of any experts by experience, who look to government to protect the continuance of a now-decimated social care provision being ravaged through the Cuts. Gods sakes Of Course we Talk to Each Other! But Social Care is widely under attack, and its all hands to the pumps to defend our now-decimated services!
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I am disgusted that mental health care is not available for people immediately. When I lost my son in 2007 due to a still-birth, I was put on a waiting list for counselling. I still haven't received it, not through my GP anyway. It was only for the fact that I wasn't coping at work and was continually off sick that my boss offered and paid for counselling for me. This isn't enough though, I feel I need something deeper than that, something like CBT or similar. I subsequently have lost my job and now need to retrain. As my previous work was with babies, this role is now very traumatic for me.... It's hard enough going through the mental trauma of losing a baby, never mind looking after other people's babies. 3 years on, I feel I will never get over it. The whole experience was so distressing. The fact that I had to give birth naturally to a baby I was just told had died was awful, then when he was born the way he looked was very shocking also. Me and my partner have been trying for another baby ever since and it just isn't working. I definitely feel that if I get the right mental health help it wouldn't be long before I get pregnant again. The one thing that does keep me strong and positive however is my 10 year old daughter. She is a god-send. Without her, I think I would've topped myself by now.
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Rambuie:
I'm not sure that I have fully understood your comment, and I agree that all social care provision is threatened by budget cuts. However basic mental healthcare provision is not in place for those in need, and like adequate physical healthcare provision, it should be, and it should be available for everyone. In my own experience, it is not a continuance of a poor system which is needed, but an improvement to provide at least basic levels of essential treatment, which is what psychological therapy is for many. It is not a luxury, it is, in conjunction with medication, the most effective treatment for many mental illnesses.
Providing access to psychological therapies can take monetary pressure off the rest of social care provision: if people are quickly and effectively treated, they are likely to be in less need of long term care and welfare services, freeing them up for others. This is part of the same issue, and you are absolutely correct when you say that it is all hands to the pumps. We are manning the same pumps from slightly different angles. -
It is a post code lottery - even for the physical treatment after birth. I moved during my pregnancy (except friends and hubby moved my stuff as I was left with complications for too long and spent most of the last half of the pregnancy in the hospital). This ment that I got two referals for my physio afterwards one where I live which appeared within 3 weeks and one at my mothers house which appeared 3 months after the birth - I had told them I was moving but though I had had the same doctor for two years they hadn't bothered to get my notes from Chelsea and my new doctor had to try and find all my notes by phoning various hospitals etc...
Here I got social services support and later a Gateway Nurse and things when it was found that I wasn't coping, I had help from the health visitor who made sure someone came to see me and baby when Hubby was away at meetings.
I don't think I would have survived without those life lines and was saddened to find out the Health Visitors don't really exist anymore due to cuts. I have also not been offered the equipment back that I needed to get round the house last time - again due to cuts. This scares me though this pregnancy is going much better and it's only my mobility that is suffering. Plus I am not on my own with a small baby as I have my little girl and no one can be lonely with her about.
I'm sure I did orginally have a point but I've just started rambling so shall stop now :)
Hope you are more sorted now and I am sorry the support wasn't there for you - I had counsiling but though it was a subsidised charity the NHS were partially funding I still had to pay - just not as much - plus the funding has since been pulled and they couldn't keep going :(
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Talking therapies in my area are also a problem. You first have to get a referral and that is very difficult, then once you have the referral this is put before a panel who decide if you are appropriate for treatment. If they agree, your referral is sent to the Psychological Therapy team. You then receive a letter asking you to outline your reasons for wanting therapy and availabiltiy for an assessment. After you send this back you go on a waiting list for an assessment. At this assessment you may or may not be turned down for therapy. If you get accepted for treatment you get put on another waiting list, which is currently several months.
Initially I couldn't even get a referal as I was considered too unstable. I felt I would never recover without psychotherapy and attempted suicide. Fortunatly for my family, friends and I, I was unsuccessful, but only just. I had to resort to pleading with staff at an MDT to allow me a referal. They didn't seem to grasp that the instability was due to the very issues I wanted the psychotherapy for and without the psychotherapy I would never be able to stabilse and would continue to be a high risk. It has cost the Trust money for my inpatient care, including mental health assessment under the mental health act. Not to mention the cost of a&e time, ICU bed and medical bed.
Whilst I wait for psychotherapy I continue to be too ill to work having lost my job. The Government needs to recognise that providing more access to psychological therapies it will be saving money in other areas and preventing further tax losses when people loose their jobs. -
There appears to be very little understanding of reactive problems, especially trauma. In my experience very little time is spent trying to trace the cause of problems, and emphasis is put on teaching strategies for coping instead, which can be very damaging to someone whose problems come from outside events.
I've no doubt that CBT is helpful to many people, but misapplied it can be a traumatic experience in itself. There needs to be more consideration of alternatives at assessment level, with the problem there that I foresee being a big increase in demand for more in-depth therapies, which obviously are already overstretched to the point of unavailability.
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Thanks for all your comments. Commenting on the blog is disabled over the weekend, while Mind's office is closed. You will be able to resume commenting on Monday morning.
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15 years ago i suffered with depression, panic attacks, agoraphobia, and a host of other debilitating health issues. 15 years on and i am fit and healthy thanks to homeopathy. I couldn't get the help i needed from our health service back then so i decided to take matters into my own hands. Getting homeopathic treatment saved my life by supporting me to take responsibility for who i was as an adult so that i could face the abuse i suffered as a child. I am now a fully qualified homeopath myself and am understandably passionate about what i do. I feel honoured to be able to now support others who are suffering emotionally to live a more fulfilled life. Homeopathic remedies are brilliant because they don't just treat the emotional issues they also address the physical symptoms that are often associated with emotional trauma. I would recommend homeopathy to anyone with any mental health issues.
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While I think that everyone should be free to subscribe to any belief system they wish to (as long as this doesn't lead them to harm others), it should be noted that there's never been a shred of evidence that homeopathy has any beneficial effect on mental health problems.
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I find myself feeling completely useless as my brother battles with bipolar.At the moment following a relaltionship breakdown he is spiraling out of control. The whole family treads on eggshells not knowing where to turn as with cuts and lack of support from the nhs he is left to deterirate. It falls on his family to care for him 24hours a day, this is physically and mentally exhausting due to his severe mood swings and volatile behaviour. My lovely gentle brother has disappeared and until he severe enough to be sectioned there is nothing anyone will do, he has suicidal thoughts and still as a family we have to care for him and each other. Why is there so little support for prevention? It is unbearable knowing that he has got to get so much worse before he gets any help
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The GP referred me to the Psychiatrist.........................
....Sometime later I saw the psychiatrist who referred me to the CPN..................
...............Sometime later I saw the CPN who ..................
...............Sometime later I saw the Psychiatrist who.....................
............... ....Sometime later I saw my GP who wrote a prescription..................
....................Sometime later I saw a CPN who................................
....................Sometime later I saw a CPN and asked to speak to a psychiatrist........................................................
....................Sometime later I saw a CPN who told me the psychiatrist refused to see me because I didn't need to see him.................................................
....................Sometime later I saw a CPN who...................................................
....................Sometime later I saw my GP who referred me to a psychiatrist ........
....................Sometime later I saw a junior psychiatrist who said there was nothing he could do.............................................................
....................Sometime later I saw a CPN who..............................................
....................Sometime later I saw a GP who referred me to a psychiatrist...........................................
....................sometime late I saw a junior psychiatrist who referred me to a psychologist.............................
...................sometime later I saw a psychologist who said I needed to see a psychiatrist and there was nothing she could do..................................................
...................Sometime later I screamed and screamed and screamed and refused to see a CMHT................................................
..................sometime later I was visited by a crisis CPN who wrote to my GP..............................
...................Sometime later I saw a CPN who counselled me for six weeks and said there was nothing more she could do..................................................
..................sometime later I saw a GP who tried to refer me to a psychiatrist and I said no way not doing that ever again..............................................................
.................sometime later I saw lots of GP's who verbally, physically and emotionally abused me into accepting a referral to a psychiatrist. I said no way.........................................................
...................sometime later I accepted a referral and saw a CPN who said that there was nothing he could do.......................................
...................sometime later I visited A&E and I was referred to a psychiatrist...........
..................sometime later the psychiatrist refused to see me and I was referred to the psychologist...............................
...................sometime later I screamed at the crisis team and again and again and again and again and some more................................
....................sometime later I visited a GP who strip searched me and verbally abused me for requesting a sleeping tablet and recommended I see a psychiatrist.........................................................
.......................sometime later I was referred to the psychologist who asked........
............................"WHY HAVEN'T YOU HELPED YOURSELF?".................
...........................sometime later I saw a psychologist who referred me to a psychotherapist.........................................................................
.........................Sometime later I saw a psychotherapist who recommended 24 sessions of group CBT.....................
...........................Sometime later I saw a psychotherapist who recommended 24 sessions of group CBT...........................
............................sometime later I saw a psychotherapist who recommended 24 sessions of group CBT..................
..........................Sometime later I saw a psychotherapist who would only agree to 52 sessions of CBT.................................
.........................sometime later I was told I needed to wait for CBT....................
...........................Sometime later after the loss of my career, my house, my friends, my financial security, my car, my clothes, my private life, my long term physical healthcare, my dignity, my self respect and ten years of my life to this idiotic system...................................
.............................Sometime later I had an epiphany I had DID............
........................... I discharged myself out of reasoned defiance and disgust............................................
.................................................18 YEARS OF CHRONIC CHILD TORTURE CANNOT BE RESOLVED IN 24 SESSIONS OF GROUP THERAPY! NOR CAN IT BE RESOLVED WITH 52 SESSIONS OF CBT!.......................
..........................sometime later I paid for APPROPRIATE therapy..........
.........................sometime later when writing this post I hoped the powers that be would realise how they support child abuse................................................................
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Jenny:
"I had a huge wake up call a year and a half ago, when I discovered that the mental health care that I needed simply wasn’t available in the county I had moved to.
..."During this time, I discovered that in the neighbouring county there were all sorts of support available, planned and integrated treatment approaches, counselling, psychotherapy, social assistance, arts therapies, support groups, and specialist psychiatrists. Upon discharge back home, I once again found there was nothing available to me other than contact with a CPN and another psychiatrist on rotation. It took eight weeks from discharge to even get an appointment with this psychiatrist due to ‘staff holidays’."
Sounds like you, too, are living in the Welsh borders. The service round here really is abysmal, and yet almost within sight of my bedroom window - in the same country, whatever the Welsh Nationalists would like to think - services are available which we in the UK's very own third world can only dream of.
When are they going to abandon this Welsh Assembly "Government" fiasco and admit that Wales is not an independent country any more - if, indeed, it ever was? Separating Welsh health services from English ones has been an unmitigated disaster for health provision in Wales, and not just in mental health.
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I feel for you, Kate. I would advise anyone with a history of abuse, especially from childhood, to pay no attention to anyone from the NHS and seek out private trauma specialists if at all possible. The proportion of the population affected by child abuse is staggering, but the response from many healthcare providers seems to be "Yeah, whatever, here's some drugs".
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I hope that Mind is lobbying the powers thart be about the terrible state of Health and Social Care. There are N.I.C.E guidelines that are not being followed, there are doctors and psychiatrists who do not understand. There are not enough talking services. I have volunteered as a service user to try and change things by training young psychiatrists and sitting on the review panels of the nice guidelines. I am a recently diagnosed BPD who is finding it hard to cope. I have paid for therapy and i feel sorry for those who have not got the means to pay . Perhaps Mind should consider funding talking therapy it is so needed. Dialectical behavioral therapy which is recommended in Nice guidelines for people with BPD is not available in Sheffield..What I find ludicrous is that the system mainly works 9-5 with a skeleton crisis team who told me to go for a walk when i rang when feeling suicidal and that they may not be there when i rang back. THINGS NEED TO CHANGE
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I was diagnosed with severe anxiety and depression in August 2009 by my GP and referred to the mental health team. By November my illness was worse and I was deteriorating. My GP suggested I ring the service to speed things up - why he couldnt do that I'm not sure?
I rang in December and was told it would be February before I would be seen. To be classed as an emergency to be seen by the crisis team I was told over the phone I'd have to self harm. I chose not to do that.
I was taking anti depressants by now. The first one caused horrendous side effetcts - Dry mouth, fatigue, insomnia, stomach cramps, fuzziness and slurred speech. I changed drugs and the second SSRI was better. Fewer side effects but not sure it was doing much?
Appointment arrived early February 2010 and I was seen by a graduate mental health worker - not what I was expecting? I thought I'd be assessed by a psychiatrist, CPN or RMN and a treatment pathway suggested?
Instead I had a computer based cognitive assessment at the start of each session. It confirmed I had severe anxiety and moderate to severe depression - I already knew that!
After the first I was given a handout about depression and anxiety to read. After the second I was given a library ticket to borrow a book called "Mind over matter" which is a self help work book. After the third I asked for a referral for talking therapy.
My local MH team couldnt offer this service and so in April 2010 I was referred to a private company for counselling . I had my first appointment with a counsellor on 28th October 2010. From diagnosis to counsellor has taken14 months.
I needed intervention in February....immediately after engaging with the service. I was suicidal at that point. Oh and at this critical point I attended a ESA medical assessment and was passed as fit to work by a state registered nurse working for ATOS. I still havent been seen by a medically qualified mental health professional.
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Very few people seem to be aware that there are computer based cognitive therapies available on the NHS for people with anxiety, depression and phobias.
Beating the blues is a program available from an American company called ultrasis. The company's flagship product for anxiety and depression, Beating the Blues®, was developed in collaboration with Dr Judy Proudfoot and her colleagues at the Institute of Psychiatry, London.
The product, based on cognitive behavioural therapy, has recently been recommended by NICE as a clinically and cost effective treatment for mild and moderate depression. This product will have a major impact on the ability of GPs to offer non-pharmaceutical treatments and reduce waiting lists for cognitive behavioural therapy.
There are also therapies available for phobias developed with Professor Marks of the Institute of Psychiatry. Fearfighter is a NICE endorsed CCBT product to treat phobia and OC fighter to treat Obsessive Compulsive disorder. Both can be prescribed by a GP and are available on line via CCBT Ltd.
View an article on the subject at
http://www.pharmiweb.com/features/feature.asp?ROW_ID=779 -
I just think what is the point in trying now.
Discharged myself from Hospital diagnosed with Conversion Disorder after three months of being 'monitored'.
My 1 year old child is the only reason I haven't taken every single box of tablets I own.
Now I just feel numb.
I swallow the tablets the doctors give me and get on with life but I'm not living I'm just here.
I've not heard from any service at all I think they've forgotten me.
I just think the wholething needs a reorganisation from the top to the bottom. Social services are the worst.
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I have recently been diagnosed with Borderline Personality Disorder and PTSD. After my 8th suicide attempt I was admitted to hospital psych ward where they were trying to force me to do things I haven't done in years (like eat in front of people) and told me that if I wouldn't eat with everyone else in the dining room then I wouldn't get food - so I didn't eat. My notes obviously hadn't been read as I have an eating disorder and considering I was in there having just tried to take my life I wasn't exactly in the right 'frame of mind' to face my 'challenges' head on.
My psychiatrist told me she was writing in my notes I was not prepared to help myself because I didn't want to take anti-depressants, anti-psychotics, or any other tablets or injections. I already take 6 tablets morning and night (12/day) and I have a history of 7 overdoses - this is why I am avoiding further medication - she finally agreed with my argument about this.
But I was originally told I needed CBT but this had a long waiting list so I was given Art Psychotherapy instead. This has been absolutely useless and I took 2 overdoses during the therapy period after telling the therapist I felt suicidal - but that doesn't fall under her remit apparently.
I desperately want to get better and get my life back. But I have had so many useless assessments and it's all about money and waiting lists. I don't want to be drugged up to my eyeballs I want to overcome these feelings and change my way of thinking.
I don't have access to the Crisis Team even now, nor to Access and Liason, or the On Call Psych Nurse and my local A&E won't deal with me because I have been diagnosed and the mental health team at the hospital come under a different Trust - unfortunately they are only available Mon-Fri 9-5 (except for staff holidays and I have a part-time Care Co-Ordinator so I don't even have that) I don't know how many people with mental health problems have crises that fit neatly into those opening hours.
Mental health is very definitely a postcode lottery when it comes to treatment, you are better if you win the lottery because then you know you can pay for your treatment - the stuff you should be getting on the NHS.
I actually got told from my pyschiatrist that because I have BPD when I am suicidal it is not considered as urgent as other people, say with depression, as I constantly will flit in and out of having suicidal thoughts and trying to take my own life. Nice to know that my life is not important because I have BPD.
I have even been told I am not receiving the best care or all the services I could receive. Mental Health Services need a major overhaul.
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