Opinion: Mental health provision in the NHS – share your experiences

After having written previous articles about delegate Sarah Yong’s motion on under provision in mental health, my own experiences with mental health, and the recent statements by Ed Miliband regarding Labour’s policy on mental health,  I want to add a final footnote to the series.

It is clear from comments on this website that Liberal Democrats care a great deal about this issue and so will be heartened by the recent work Norman Lamb has done to put mental health on an equal footing with physical health in the NHS mandate.

There was a stage a few weeks ago when I thought I had finally beaten all of the problems I have been having. Fat chance. Over the last few days I have had a major crash and have hit rock bottom – sleepless nights, physical shakes and numerous breakdowns.

The point is that I have realised now that feeling sorry for yourself gets you nowhere. I have been very, very close to giving up completely recently. I know that the future will be horrific and traumatic at times, but I also know I will try to get through it – because there is no other choice.

On a side note, I always find it bizarre, how when you are experiencing something in your personal life, there seem to be constant reminders – even in the national press. In last week’s Independent there was an extremely profound article by the paper’s foreign correspondent, Patrick Cockburn, concerning his experiences of mental health provision in the NHS, when his son Henry was living in various institutions because of his schizophrenic illness.

I really want to get two points across with this.

Firstly, Mental Health affects everyone and it has surely never been higher up on the political agenda. Lib Dems should be shouting about this from the rooftops and making sure that people are fully aware that this is the only party which has genuinely been pushing this to the top of the political agenda.

If there are any people who read this who want to share any comments about their own experiences, then it would be great to hear them. I know writing about this has helped me in some small way and I hope it can help others too.

* Tim Purkiss is a party member from Somerset and blogs at Nation Discussion

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  • I have wrote on here before about my experiences with the NHS and mental health.

    Although I found it extremely difficult the first time round to write about it. I do believe strongly that unless people like myself share their experiences, nothing will change.

    Some people will all ready have heard my story, so apologies if I am boring you.
    I omitted some details in previous posts due to my fear of being judged, so this time I will try to be a little more courageous.

    I was 8 years old when I was started to be sexually abused by my then brother in law.
    When I got to the age of 13, I tried to find the courage to stand up to my abuser and put a stop to the abuse. It was then that he threatened me, that if I did not allow him to continue on with the abuse {at least once a week} he would start to abuse my young nephews instead {his sons} who were aged just 8 and 10. At first I tried to stand my ground and I was determined not to allow him to keep doing what he was doing.
    It was a short time later that my then X-Brother in Law announced that he was taking the 2 boys on a weekend break {just him and the boys} Deep down I recognise that this was a threat/challenge, their father certainly did not have the kind of relationship with his sons where he would take them on a mini holiday. I felt totally trapped and scared and did not know what to do.
    I felt like my life was not my own and it had already been destroyed by him and I felt as though it was my responsibility to spare my nephews from a similar fate. So I gave in and allowed it to continue.

    From that point on, the sexual abuse took a really nasty turn for the worse, the abuse became a lot more aggressive and rape.

    I hated what was being done to me, I felt repulsed by it and also ashamed.
    After every episode of abuse, I felt as though there was a dark swirling mass inside of me that I needed to purge from my body, so I resorted to eating certain products that would have a extreme laxative effect on my system, so I could rid myself of this stain. I would eat copious amounts of Marmite direct from spoon and raw oxo cubes like sweeties to achieve this laxative effect.
    At first, I was only doing this the day/day after the abuse, to purge this stain, then I would then try to carry on as normal for the rest of the week, pretending to myself and others that everything was normal.

    There were warning signs that people should have probably picked up on, but that’s neither here nor there, You become a master of covering up the lie yourself.
    On one particular occasion the abuse became so bad, that I ended up with severe rectal bleeding.
    I was petrified.
    On One hand I thought I was going to die, I was scared and I did not know what this bleeding would mean,
    On the other hand, I was to scared to go to the doctors to be examined, I did not know if the Dr would be able to tell that I had been penetrated anally. {remember I was now a teenager} and I feared that either no-one would believe me , or they would think I had consented. So I hid it from everyone.

    I started self harming more and more with the laxatives, almost every day, as I constantly felt the need to purge this stain inside me.

    My health started deteriorating, I was losing a lot of weight and became very skinny and pale.

    My mother marched me off to the doctors as they thought I was anorexic or something, but nothing much happened, because I was quite tall, it was dismissed that I was having a growth spurt and I was prescribed food supplement “build up”
    I know from my medical records {I obtained copies for legal reasons} that some time later I had to attend hospital for a broken arm, In this record the A&E doctor described me as a patient, this tall, skinny, very gaunt and pale looking lad presented himself to me. {charming}
    Anyway, things continued, and I tried to carry on with life as normal as possible, becoming part of the lie yourself, trying to portray and image to the outside world that everything was normal.
    So I threw myself into school and just tried to get on with things the best way I could and use the resources that I had to myself as a coping mechanism i.e the purging.

    As the years went on and my teenage years kept coming, the sense of self disgust just worsens, you are totally trapped and you fear if the truth ever comes out, nobody would believe you because of your age. It just wouldn’t make sense to anyone.

    I finished school and managed to get straight into a job within the restaurant Industry, I threw myself into work as this became my obsession “escapism” I felt the need to prove myself in something, not only to prove to the outside world that everything was “normal” but also to myself that I was more than the abuse.
    I was successful in my work to begin with and quickly worked my way through promotions, By the age of 18 I was senior supervisor of the restaurant.
    And yet, once a week, the abuse was still going on. That is the part I find extremely difficult to share, I fear of being judged and people not understanding, “how can someone who is now an adult, still be the victim of abuse”

    As I mentioned in other threads, this is when drugs came into my life, I had been introduced to dope, and I found that it helped me escape the realities of my situation.
    I still managed to hold things together enough to carry on progressing with my career and eventually got to the position of assistant manager in charge of running 4 restaurants. But work was no longer acting as a distraction or escapism for me, so that’s when I turned to using harder drugs {cocaine,speed, ecstasy and even LSD at times} Only on the weekends though at first.
    Eventually I started using more and more and it got to the stage where I was using during the week, just to be able to get through the day at work, shamefully resorting to snorting cocaine of the toilet seat at work. Of Course my work began to suffer and I could no longer cope.
    I went to the Doctors and told him about my drug use {but not the abuse} and got signed off from work with depression.
    I was prescribed anti-depressants but offered no other support.
    I ended up being signed off sick long term with anti-depressants, my world was falling apart, I was 19 coming up for 20.
    I attempted suicide on a couple of occasions.
    I was repulsed at myself and that the abuse still went on, although not so often, I got it into my head that I only needed to let this go on for a couple more years and my nephews would reach an age where they would be able to protect themselves.
    I tried numerous things to put my x-brother in law off wanting to do the things he was doing.
    I shaved my head into a Moheican , died it purple and covered myself in piercings, I stopped taking care of myself “hygienically” doing everything I could to make myself as unattractive and unappealing as possible, but it didn’t work. My family and former friends put my behaviour down to having some sort of early mid life crisis, because I had been so responsible in the early years with school and career, they believed maybe I thought I had missed out on something so I was choosing to rebel now.
    Again I ended up in Hospital with more Overdoses and eventually I was sent to see a psychiatrist. I was immediately judged and dismissed by him, in fact my medical records state, this tall unkept skinny lad with purple moheican and piercings, and put all my problems down to drug use. My doctors continued to sign me off sick and prescribe various medications, but I was never provided with any therapy.
    Eventually when I was 20, I had a complete break down, hit rock bottom. The truth about the abuse came out, it turned out that I was not the only one and my x-brother in law had in fact abused my 2 older siblings when they were younger .
    He was arrested and eventually sentenced to 8 years in prison.

    It was only then that NHS sort of started to take my health seriously, I was sent to see a psychiatrist again, however, I later learnt that this was not because the NHS was referring me for mental health therapy, It was at the Crown Prosecutions request as they wanted an impact assessment done on me to present to the courts for when my abuser was eventually sentenced.

    I think I saw the Psychiatrist for about 10 sessions, I never understood at the time {until after my medical records were obtained years later} what the point of these sessions were, All he did was ask questions, which I answered, but I never received any feedback or suggestions.
    Back then, there were not really any support groups for men who had been sexually abused. So my G.P continued to sign me off sick from work and I was prescribed various medications.
    By then I had totally cut myself off from society, I never left my house, I cut all ties with friends and former work colleagues, I still carried a huge sense of shame and embarrassment. The court case was very high profile and received a lot of media attention at the time.
    Things continued like this for approx 5 years, no counselling or support. I had however managed to kick drugs, because by secluding myself from the outside world, I didn’t need them to hide behind.

    In 2004, I tried to get myself back in to work and back on the career ladder, so I went back to college to gain my Licensee certificate and went on to run a pub/club miles away from my home town were people new of my history.

    Things worked out well for a while, however, I was still hiding my past and my pain, I feared people getting to see me and my vulnerabilities, and so you create a character to hide behind, it wasn’t long before I turned into a outrageous party goer and was using drugs again as a shield to hide behind. Eventually my depression worsened tenfold and I was forced to give up work again.
    I returned to my home town in 2007, in a complete mess once again, I was being treated by the family G.P once more, who obviously knew the history. Again I was put back on medications and signed off sick from work, but no therapy.
    Sometime in 2007 I took yet another overdose, I had once again secluded myself from society, I found it very difficult moving back to my home town, because everyone knows my past. Bumping into anyone who has knowledge of my past instantly brings on PTSD.
    I was eventually sent for CBT in 2008. This went on weekly for almost a year, however it is not “normal” for the NHS to allow someone to be in long term therapy like this and it is normally limited to 20 weeks. Eventually my therapist had to sign me off, even though she acknowledged that without therapy my health would deteriorate.
    In the end, I was left with no option but to pay for therapy “privately” which I still do to this day, every week, which comes out my DLA Benefit. {I do not know what would happen, were I to lose this benefit}

    My doctor acknowledges that this situation is ludicrous, however, his hands are tied and he can not refer me for more therapy on the NHS unless either
    a) I attempt suicide once more
    b) I am out in public and I am threatening danger to myself or others.

    Since 2008, I have developed physical disabilities which have a knock on effect to my mental disabilities. I now suffer from ulcerated colitis, which means during bad flare ups, I suffer from severe rectal bleeding. Because of my past abuse and the situation I explained to you previously, the site of blood in the toilet causes me to have a severe episode of PTSD and makes my depression unbearable at times. It also means that I often have to attend hospital for examinations and tests, and as you can imagine, a physical examination of this nature for someone like me is horrendous and traumatic. The hospital staff have no idea about my history of abuse, all they are treating is the colitis, that is a serious flaw in the NHS that my mental health issues and past and my physical difficulties do not get linked up.
    When I am having a panic attack in the Hospital GI dept, the last thing I want to do is have to explain my past to them and it makes things very difficult.

    I have since started to reopen an old case with the Criminal Injuries Compensation Authority, to try and make an application for loss of earnings. {hence the reason that I have my medical records)
    Through my solicitor I was sent to see a Psychologist to assess the severity of my mental health.
    I was diagnosed as having severe clinical depression
    Depressive Disorder DSM.IV 300.29
    Post Traumatic Stress Disorder (DSM.IV 309.81)
    Anxiety Disorder: Panic disorder with agoraphobia (DSM.IV 300.21)

    My GP has a copy of this report and it is now on my medical file {Its disgusting that we have had to pay privately, to have my mental health problems fully diagnosed} but despite of this diagnosis, I still have to fund my therapy “privately” and do not get therapy on the NHS.

    I absolutely hate the situation that I am in. I hate the ordeal that I have to go through to maintain my access to welfare, I have in the past had to appeal Incapacity Benefit decisions as well as DLA. I am currently having to argue my case with ESA, because when I was Migrated from Incapacity to ESA, I was placed in the (WRAG) group and not the support. I asked for a review and that was 20 weeks ago and I still have not had a decision. I am certain I will end up having to go to appeals at the tribunal, but I am thankful that I have support from Disability Rights, My GP and therapist. But going on what has happened to other people, I have no doubt that the DWP will not change there review and I will go through the ordeal of this tribunal, were I will be forced to discuss in court, very personal and traumatic reasons for being the way that I am.
    The DWP are not interested in the reasons for my mental health problems, and ATOS are even worse, In fact, I was told by an atos health care profession not to talk about the reasons for my illness as it is “irrelevant”

    I am pining my hopes on Criminal Injuries agreeing to re-open my case and allow me to claim for loss of earnings, then I will not have to continuously go through these ordeals with welfare, justifying my health to them and hoping a few scraps will be sent my way in order to live.
    I will also be in position were I can continue to pay for my therapy privately and not have to rely on the inadequate and limited support that is provided through the NHS.
    I know I will be waiting well over a year for criminal injuries to make a decision on my case.

    I have been waiting almost 6 months for the DWP to review my Employment and Support Allowance.
    I know if the DWP were to refuse me, I would end up having to forfeit benefits, because there is no way that I could attend the workfare or Interviews that they require of people in the (WRAG) Group. I don’t leave my house now, only for medical appointments and to “occasionally” visit family members. I have no contact with anyone else, the only contact I have with other people in society I suppose, is that I sometimes post on this forum {to the dislike of some I am sure lol}

    Anyway, my apologies for such a long post, if you are managing to read this far then I am shocked but thankful, I am sure some people got bored and switched off at paragraph 2.

    I apologise for any graphic nature that may have caused alarm or distress to anyone. Although I found this very difficult to write, I felt it was important to share the difficulties of people like me and what we face in order to get any support from the NHS, Welfare and the Government as a whole.



  • @Tim Purkiss

    Thanks, It was incredibly difficult to write, but I think it was important to do so.

    Issues regarding mental health provisions, The NHS and yes the Government and Welfare is something that desperately needs to be discussed.

    I know my own story can make it extremely uncomfortable for some people to discuss and there is natural reluctance for some people to engage.

    I would however prefer people to feel that they can engage , ask questions, or give opinions, whether it be about what happened, what I have said in regards to my experiences with the NHS and or access to Benefits. And people should feel comfortable in doing so without fear of causing offence, or fear of receiving an angry response to their view, because it will not come from me or I hope from others

    The matter of mental health/NHS/Welfare needs debating if there is going to be any meaningful changes made.

  • After Matt’s comment I feel like mine is somewhat superfluous, however…

    My experience of mental health provision: it’s entirely dependent on which GP you see first. I have had GPs before who have just sighed and written out a scrip for Citalopram. My current GP is a lot better than that, and even when I go in for something else always asks how things are going with my depression/anxiety/stress – as in he brings it up, doesn’t wait for me to mention it. I’m not on drugs at the moment, and am managing my symptoms with a combination of exercise and support networks, which I find far preferable because I’m rubbish at remembering to take pills.

    I really, truly wish that all GPs were as switched on and empathic as my current one.

  • @Jennie

    Having an understanding G.P who is switched on and is able to approach you with a subject is a godsend.

    I have a good relationship with my G.P who I have been seeing for over 20 years now, who has always been supportive.

    I do find it awkward though sometimes expressing myself, especially at times when my health takes a nose dive. Even though I have been seeing him for as long as I have, I still do not feel totally comfortable at times revealing the problems and difficulties that I am facing. I suppose the personal circumstances of mine does sometimes make it more difficult.

    I think the most frustrating thing I have experienced though with my G.P and the mental health care professionals that I have seen, is that the 2 treatments do not join up. What I mean by that is, you would naturally assume, that because your G.P has made a referral for you to see a therapist and obviously your G.P is well aware of the reasons for your mental health problems, the 2 departments would share information.
    I always assumed that my therapist would keep the G.P updated with your progress and explain the difficulties that you have coping with day to day living e.t.c
    That turns out not to be the case at all and this information is not shared. That shocked me a lot, because obviously with a therapist you build up a different kind of relationship, one where over time you have learnt to open up and speak more freely about your problems and day to day difficulties.
    With your G.P you
    a) don’t tend to have the time
    b) G.Ps are not necessarily trained in-depth to deal with mental health issues and so therefore would not naturally have the kind of discussions that you have with a therapist, and besides, surely that is the point of referring a patient on to a mental health team anyway.

    This is something that desperately needs changing, there needs to be much better communication between the G.P and mental health services.

  • @Jennie

    By the way, I don’t think anyone’s contribution is superfluous. There are many different reasons why people suffer from depression/anxiety disorders.
    Each persons circumstances are different and each Individuals health is just as important as the other, regardless of circumstances.

  • Although I am extremely angry with being diagnosed as a Paranoid Schizophrenic and think the label and the stigma that goes with it is unnecessary, I will admit that I needed help with my mental health.

    It’s all well and good that we’re paying more attention to it, but without the proper approach, we are wasting a lot of money and resources that could be spent on physical illnesses. It is a horrible experience being in hospital and the medication is dangerous, unreliable, and inneffective in a lot of cases. The problem is… mankind is too sympathetic and nobody has yet made the brave decision to shift the treatment of mental illness into the hands of psychology, which has more effective and less barbaric programs.

    As the author of a soon to be published book on the subject, I was astonished to find that I had been fed constant lies by the very people who cared for me.

    For one, chemical imbalances are induced by drugs. Drugs do not correct it.
    Secondly, long term, drugs are actually causing more relapses.
    Thirdly, genetic studies actually tend to disprove any biological, or hereditary, basis of mental illness.
    Need I go on?

    The current model, that is, the medical model, relies on one element and one element alone it its ability to sustain itself.


    Nobody likes it. Nobody thinks about it. The whole practice of psychiatry, being an uncertain subject, relies on its own humor to sustain itself.

  • Jennie
    You are right. The GP “work until you drop dead” is a case in point.In his view people having problems are just slackers. This doctor is in fact highly competent but his judgment can be warped by his political outlook .
    Many years ago an elderly man went to him complaining of feeling unwell.The patient was told to pull himself together.The next week the patient died. At least two of his patients suffering from depression have committed suicide.

  • Matt: thank you. I agree that information sharing is important, but perhaps there ought to be some sort of requirement for permission to be given by the patient?

    Manfarang: that’s horrendous 0_o

  • @Jennie

    ” agree that information sharing is important, but perhaps there ought to be some sort of requirement for permission to be given by the patient?”

    I get what your saying, and I understand that there is patient confidentiality and all that, but I would have assumed that the “confidentiality” part would not include the physical and emotional difficulties that you face on a day to day basis. I would have thought this is something that should be shared between the therapist and the G.P, in fact I would have thought it was vital.
    Through feedback from the therapist, the G.P should get a better understanding of your disorder and the difficulties that you face. This would help the G.P not only better understand his/her patient but also enable them to fill out for instance “medical reports” if asked to do so by the DWP.
    As thing stands, when the DWP asks a GP to give details of your illness and how it effects your day to day abilities, a lot of the time, the GP does not know, He can only comment on the actual Illness you have been diagnosed with and the treatment you are being given. They are unaware of the rest of the details, because this is something that is mostly shared and certainly more in-depth with the therapist.
    There needs to be more joined up communication with departments, so any healthcare professional you see within the NHS, has a good understanding of a patients needs and difficulties.

  • Dave Simpson 13th Dec '12 - 9:13am

    Probably the most prevalent Mental Health disorder is Alzheimer’s Disease. Treatment of this, in my experience seems to be both sympathetic and effective (as far as it can be – there is no ‘cure’ only amelioration.) My brother i law suffers from Alzheimers, and I was suspected of developing it when I stared having severe memory lapses.

    After consulting my GP, a specialist called at my own home to run a series of tests, which indicated that the problem was not Alzhgeimers, and a course of therapy (‘Mindfullness’) was arranged for me. This seems to have had some beneficial effect.

    All carried out with professionalism and sympathy on the part of all NHS personnell involved. Equally, n my brother in law has no complaints about his experience, under a different NHS Trust.

  • When I went to the GP with depression the first thing he said when I entered the room was
    “your notes say that you are not ‘forthcoming’ this means that we cannot treat you because you are not open enough with us.”(this was before he asked me any questions about myself which I would have readily answered the best that I was able. he also said “what makes you different from anyone else your age?” he sent me home with no help at all.
    After tearful discussions with a trusted friend I returned to the doctors surgery and made an appointment with someone else.
    I feel that unless you are on the verge of killing yourself no-one is interested in your mental health. therapy options are very poor. Having done CBT online and counselling I know that neither of these routes work for me – or at least only work up to a point. There appears to be no real vigour or oganisation in the approach of the NHS to mental health.

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