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Unacceptable treatment from the NHS, uncaring mental health care by GP’s and Psychiatrists, the uncovering of ATOS Healthcare’s processes and charities like ‘Emergence’ offer training to professionals

As you will know I tend to write upbeat or informative articles, and I certainly do not have a ‘woe is me’ attitude, but today I am going to have to be a little negative – firstly, towards the mental health sector of the NHS (not the whole NHS service, of which I have had some very good and also average experiences).  I have simply had enough of the lack of treatment for mentally ill patients, which I read about all too often.

I will try to keep this brief.

This may be viewed as controversial and may be triggering to those suffering with mental illness – PLEASE read with care 🙂

As you may know from my book, I was told I had depression when I was in my teens, following a series of distressing events. I was offered counselling via a referral from my GP (doctor), went along (dad dropped me off at the clinic), and the lady said she would refer me to another lady who would implement the counselling. Now there is a bit of a gap in my diaries, and my memory fails me, but let’s just say I never saw a counsellor, remember no follow ups or offerings of counselling and nor does my dad. Mind you, it seems he didn’t follow it up either.

My mum was catatonic schizophrenic and had twenty years incarcerations (in/out) of asylums/mental illness hospitals. I have three older brothers. No-one ever came to see us children to see how we were getting on, to discuss my mum’s problems, or to see if we were safe – never. And to this day, not one person has ever asked.

During my life I showed various signs of things not being right in my mind – eating disorder, anger, running away, impulsivity, relationship issues, self harm, alcohol abuse, roaming the streets at night alone – all sorts of things. No-one noticed and I liked it that way.

My GP never asked me about my counselling or my depressions again.

I sought my own private talking therapies – psychotherapy, hypnotherapy, cognitive behavioural therapy, counselling. I still got worse.

I moved away and travelled to various destinations. For various reasons I sank into depression around 30 whilst in a good job. Finally my NHS GP referred me to therapy and I went along. It was adlerian therapy she offered and it worked wonders on some aspects of my thoughts/feelings.

To cut a long story short, one day, when I moved back to my parents house (for the *I’ve lost count* time)  My symptoms got worse and I began ‘suicidal ideation’ and ended up roaming the streets begging doctors in each surgery I came across, to take me on and get me some help. I was turned away by every single one of them.

My ex-family doctor eventually did take me on and it went on from there. I was misdiagnosed for a whole year when suffering lethargy, mood swings, and was putting on weight. “You’re not a spring chicken” I remember my GP saying, but I was only 32 and felt like 62! He basically thought I was making it up. A year later, I was diagnosed with hypothyroidism (under-active thyroid). It was no surprise since my mum had had it for years and it can be hereditary.  Hypothyroidism is also linked to depression which I had had on/off for years. But I had endured a whole year of my GP making me feel like I was making it all up, whilst my thyroid and symptoms were left untreated.

My mental illness got worse until it was ruining my life (I won’t detail it here as it’s all in my book and there’s lots of it on this website too). I went to my GP several times asking to see a psychiatrist or to get some therapy. He said “the problem is, you look OK” which was to be my biggest downfall.

Unable to wait any longer, my boyfriend paid £500 for two private psychiatrist appointments who finally gave me my proper diagnosis. However, I couldn’t afford the treatment he suggested.

A long time after, due to consistent requests and eventually taking my boyfriend with me to my GP appointment, he referred me to the NHS mental health department.

I was assessed, given a psychiatrist, medications and eventually got CBT therapy via an NHS clinical psychologist, which was marvellous – it really helped with some of my more serious, debilitating symptoms.

I got a lot better. However, I always had to keep chasing psychiatrist appointments and they were always given to me later than the suggested dates of assessment, despite my taking anti-psychotics and anti-depressants.

I got a lot better and last saw my psychiatrist in January of this year, where I remember crying through the entire appointment and the psychiatrist saying I didn’t have depression. He said that I should have another check up in four months.

To this day, I have not seen anyone since January. For the last four months, I have spoken to the appointments line several times, my psychiatrists secretary who said she’d sort out an emergency appointment and would look out for cancellations. I got call backs saying I would have to go back to phoning the appointments line. I began to say it was urgent and I was still on the medications and felt very upset no-one was looking out for me and I was having side effects.  Round and round in circles this predicament went. Finally I was given an appointment for this Monday just gone (26th September) with a fill in psychiatrist. When I got there they said they had no record of my appointment, said the fill in psychiatrist was off sick and treated me like I was making it up. They then offered me an appointment in January of next year (2013).

I was rather peeved, let’s say, and ended up speaking to the duty manager, who said that, no-one had phoning me to say that the fill in psychiatrist was off sick and that my appointment had been cancelled, was “unacceptable”.

She took notes on what I told her, she confirmed that she would contact my psychiatrist’s secretary, and the duty manager working the next day (yesterday), and absolutely make sure that they contacted me to give me an appointment. I said to her that I couldn’t have been on the cancellation list for 3 months as advised, as there must have been some cancellations and I was never offered one.  I told her that it seems no-one cares about, or are looking after, their patients. I said that I did voluntary work raising awareness of mental illness and suicide and that it is awful to then see, first hand, that patients are not looked out for by the so called professionals they are in the care of. I said that the main reason I was there was to discuss my medications, side effects and get a referral to a little more therapy, but that I couldn’t get the therapy until I had a referral from the psychiatrist and I had to see him to get one. So for months now, I am not even on the referral list as I haven’t seen him. Vicious circle!!!

Yesterday came and went and I received no phone call. After so many phone calls, talking to everyone in the department and beyond, begging for an appointment, and because I am feeling a lot better and am doing well on my own, I cannot bear to do any more chasing.  And I can cope better now on my own – BUT WHAT IF I COULDN’T? Earlier this year when asking for the appointment, I had been asking for therapy as I was still having issues.

Lucky I have my writing and my book to keep me positive and busy, and helping others online and trying to be inspirational, all keep me well and motivated to keep fighting any last symptoms I still have. Lucky I have my own strength.

Many others don’t – and for them in particular, I am going to lodge a complaint now about the NHS service I have received, as I cannot bear the idea of people in distress and who are ill, being treated like this.  And I am fed up and sad about all the terrible stories I read or hear about where the levels of treatment and care are far worse.  It’s all another postcode lottery.

To add insult to injury I applied three months ago for two jobs in the same NHS mental health department where I am a ‘service user’ as I thought I could bring something new and refreshing to the team – I sent a very well thought out and enthusiastic application to both jobs, of which I am totally qualified AND guess what?  I didn’t even get a rejection email, letter or phone call.  Thanks for that, I didn’t expect anything different I suppose.

*update on 28th September 2012* I chased the psychiatrist’s secretary up today and she said I can have an appointment on the 22nd January 2013 – so complain I will!!!

* update on 8th October 2012* To top it all off, I have now been told by my GP I have to change doctors as I am ‘out of their area’. I told them I will add that to my long complaint to PALS and that, when my psychiatrist will not see me, it was a disgusting way to treat someone – to refuse to see them. 🙁

PREVENTION IS BETTER THAN CURE

BPD stat’s alone – 2% of population have Borderline Personality Disorder (BPD).  Out of that 2%, 10% commit suicide.  20% of all psychiatric hospital patients are suffering from BPD. And that is JUST BPD, let alone depression, schizophrenia, OCD, anxiety disorders and so many other mental illnesses.  One in four, they say, will have experienced some sort of mental illness or disorder in their lives – a whole quarter of the population!

If someone commits suicide it is too late to help them.

***

And as for ATOS Healthcare, who are employed by the government to co-ordinate the health assessments for ‘Employment Support Allowance (ESA) – that is all the paperwork and doctor’s assessments, working directly with applicants who have disabilities.  Confidential post (including application forms by disabled patients) sent to them are being intercepted by post office staff without public knowledge. Plus their cut backs and deeming disabled and mentally ill people fit for work is disgusting! The government should not employ public companies to deal with government business in my eyes.

***

Thank goodness for people like the Community Interest Company (‘Not for Profit Organisation’) like ‘Emergence’ who raise awareness of personality disorder.  They also deliver many help aids and training skills – here’s two examples:

Knowledge and Understanding Framework (KUF): A major part of our work is delivery of the KUF awareness training which seeks to improve service user experience by developing the capabilities, skills and knowledge of the multi-agency workforces, in health, social care and criminal justice, who are dealing with people with a diagnosis of personality disorder.

And

Direct services: We have a number of activities specifically designed for service users and/or carers, including the use of arts and creativity.

See their website to find out more! CLICK HERE TO OPEN IT IN A NEW WINDOW

Follow them on Twitter @EmergencePlus (CLICK HERE TO OPEN IN A NEW WINDOW)

Follow them on facebook (CLICK HERE TO OPEN IN A NEW WINDOW)

By the way they have a new member’s area so get logged in today to read or write blogs or submit artwork or find out more about personality disorders and the help they can offer. They are based in London, UK.

***

I also have a shout out to Sue Sibbald, who works with the Sheffield primary care trust to inform and nurture the growth of services offered to those suffering with Borderline Personality Disorder) in her area via training for professionals. Sue also runs #BPDCHAT every Sunday night on Twitter where all those interested in or suffering with BPD can chat or just watch the chat between people across the world. This helps many gain insight and realise that they are not alone. It brings people together. Sue also won, this week, the SHSC NHS Trust Award for Excellence for the work for people with Personality Disorder in her Sheffield NHS trust. Congratulations to Sue!

Follow Sue Sibbald on twitter @BPDFFS (CLICK HERE TO OPEN IN A NEW WINDOW)

Follow Sue Sibbald on facebook (CLICK HERE TO OPEN IN A NEW WINDOW)

Any comments welcome!

Amanda 🙂

 

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14 comments to Unacceptable treatment from the NHS, uncaring mental health care by GP’s and Psychiatrists, the uncovering of ATOS Healthcare’s processes and charities like ‘Emergence’ offer training to professionals

  • Sharon

    Hello. Well done to everybody who complains about mental health services. I am one of those who have been left to fend for myself. I think it is disgusting the way people with mental health problems are treated.
    I hope you all find the care and support you deserve.

  • Scott

    Only just stumbled across this blog.

    My misdiagnosed several times many years ago. After two suicide attempts and developing a wholy psychological drinking problem, I was dismissed after an assessment which lasted all of 10 minutes. As time went on, I w3nt everywhere chasing a diagnosis. I mean everywhere. It took 2 years until I went for a checkup at the private hospital I went to before the doctor there sat me down after he sa2 I was distressing. I was given an emergency appointment at the local mental health team where they diagnosed me as having bi polar disorder. So for 2 years, my life wae in ruin because of the inefficiencies in the nhs.

    Now it’s happening again. My doctor in this area is about as much use as a chocolate firereguard. I visit him once a month to be given betablockers and ssri’s instead of actually helping. I go to the mhat and they tell me that he wont allow them to prescribe me anything more as h3 doesn’t believe that there is anything else wrong. This has been going on for a year and I have had enough. The mhat have told me that its bordeline personality disorder. So my gp is happy at letting me ruin my life . It’s already destroyed the best relationship I have ever had because its going unchecked.

    I am in the process of writing up a petition to make sure there is a fully qualified mental health professional im every gp surgery. I would love you to sign it when I have prepared it. This has gone on for long enough and its weirdly refreshing that I have not been the onlymone to suffer from awful care of the most vulnerable.

  • Paul Smith

    In August 2013 I attempted suicide for the second time at the age of 50. It was a serious and planned overdose. I was rushed to A&E with a full standby in place as I nearly died in the back of the ambulance. I subsequently spent 10 days in a mental health unit. As I had nowhere to go on discharge ( my partner was refusing to let me back into the home we shared ) I asked to see a social worker and was told there was no one available. I discharged myself as I was given absolutely no treatment while in the unit and was not assessed for the underlying problem.
    I was handed a helpline card on the way out and a bit of paper with details of a seven day follow up appointment. The seven day follow up lasted 8 minutes in a local hospital.
    I have seen no one or had any treatment since.
    I would say to those who doubt how bad the care of those with mental health issues is out there, “believe the stories, they’re mostly true”, once you get labelled with the mental health tag it’s game over. I’ve now given up on getting treatment from the NHS. It really angers me when I see the ads for the “mind your head” campaign; are they having a laugh at our expense?

  • Hannah

    Amanda- thank you. Thank you for this post, for being strong, insightful woman and for having the guts and the gumption to point out mistreatment and when it has not been taken seriously or ignored- for reasonably complaining. I truly do empathise with the part of your post were you describe how, over time and in amongst all this being messed about while feeling dire, how out of your own strength you began to get more back on track. ‘BUT WHAT ABOUT IF THOSE COULDN’T?’ you ask. I could not agree with you more.
    I currently have a longstanding complaint with the NHS mental health service, and we having been batting letters back and forth over the past two years and now, with the help of advocacy, the case will be presented to the Ombudsman. I shall (attempt!) to put it in a nutshell:

    Just over two years ago, I was deeply, had become very fat (put on 6 stone in just under one year), and was sleeping up to 18 hours a day. The OT I got given behaved outrageously, and seemed to be in need of some sort of therapy herself. Things became too much when, after she has called me ‘stupid’ in my own home, we were at a review meeting were she ranted about the stress she was under, her job being made part time to redundant, ect. ect.- and then she staggered out of the room and turned the light out on me. I had an appt. with the psychiatrist a few days later and appealed to him for help. I explained her behaviour, and told him I couldn’t see her anymore and wished to complain to her superior. He didn’t respond to anything I said about her, only that I was to keep appointments with her. He then told me “at least you’ve still got your job”. I am 23 now, and after spending all of my teens in an inpatient unit, I have not yet been well enough to have a job. To cut to the chase it turned out that that OT in fact called that Dr about me following the review, and he in turn went all out to protect her: to the point of changing my diagnosis on the spot and writing up actual lies about my conduct in my notes, turning my character on its head and basically depicting me as a caricature of a borderline personality patient. What I have felt in response to this has been nothing short of grief and utter despair. It has been like bereavement. My ability to trust, which was already fragile, has been completely blown to pieces. I just cannot comprehend that this is how anyone would treat the vulnerable in their care. I am incredibly fortunate, however, to have a family member who cares about me deeply enough to have left her post teaching Philosophy and become my fulltime carer. Since then, she has helped me access advocacy, pay for private therapy, loose the huge amount of weight I gained. I am at college now and while i still feel fragile at times, I can envisage a future. My esteem & competence is growing.
    But tell me? What would have happened if i had had nobody? I truly believe i may well have committed suicide. Not to seem over the top, but seriously. If you don’t have anyone and you’re grievously ill, and NHS care providers are completely capable of acting in such an immoral way… What do you do? How on earth do you cope? Who believes you? What happens to you? All there is is spiral. Even the top quality advocacy that aids me is only available to those with ‘carers’- it makes me feel sick. So Amanda, someone hears you, loud and clear. You’ll be okay thank God, and I will be okay. But what about those who remain that vulnerable and without help? I’m complaining as much for those people as well as myself. Take good care and regards. Hannah.

    • amandagreenauthor

      Thank you so much Hannah for sharing your story. I am so glad to hear that you have the support you need as many people do not. I wish you all the best that your recovery continues. I have recovered from borderline personality disorder, OCD and Depression 🙂

  • MadgicWand

    I think I know why mental health services are often so sub-standard. (My diagnosis is OCD incidentally). It’s substantially the same reason that any number of abusive practises occur in other walks of life: people are reluctant to discuss their actual problems in the first place, since real mental anguish is a very difficult thing to convey adequately in conversation. That being the case, how much more difficult will many – I think almost all – patients find it to raise the point that the care they are getting is seriously inadequate or even borders on abusive? In my own case, the first time I was referred to an alleged specialist, aged about thirteen/fourteen, the ‘treatment’ prescribed was deliberate non-consensual ‘contamination’ to be carried out even if I violently resisted. I did and the useless treatment was successfully carried out resulting in cuts and bruising, no difference to my symptoms but several hours of uncontrollable despair and weeping. Thankfully, my G.P. was completely horrified by what I told him and allowed me to withdraw from her (the specialist’s) sessions fairly soon afterwards. Comically, she said this was all for the best since I was ‘uncooperative’! True in a sense – I was pretty messed up at the time, which I think was the whole point. Physical violence, to this day, doesn’t make me any more cooperative but considerably less so…
    It isn’t just (some) psychiatrists who seem considerably more disturbed than those they are ‘treating’ who create additional problems. Most people’s OCD seems either to get much worse or even to begin in secondary school and I’m convinced that’s no coincidence. It is the first time that people are left largely unsupervised in the company of equally but differently troubled youngsters. I find it amazing that most schools seem to have no procedures to respond to abuse. Teachers do not have time which is at least partly understandable but senior staff also generally know precisely what is going on and reassure parents while effectively doing nothing. There was probably very little action taken in my case because one of the worst bullies was the son of a member of staff and I bet that isn’t entirely uncommon either. The worst of what I went through eventually stopped because of some major (slightly late) hormonal changes (!) – after that, people realised they couldn’t pick on me because I’d knock their lights out (or certainly try). The teachers never did anything – the none-too-edifying answer, for me at least, was (defensive) violence. Everything else I gradually worked through on my own with the occasional minor relapse. The brain knits like broken bones – it takes a while and you’ve got to hang in there. All the best to you Amanda, and others who’ve contributed here.

  • Tina

    I have a diagnosis of Borderline Personality Disorder and have also been treated unacceptably by my local GP surgery, unfortunately I can’t change practice as they are the only one in my catchment area. My past experiences of services have not been positive either – constantly being turned away or ‘slipping through the net’. I have also had bad experiences with some that work in the CMHT as well as the ‘out of hours’ service quite recently. I’ve spoken to lots of people with mental health difficulties who have had very negative experiences with services. However, I would like to say that I feel exceptionally lucky as I have an amazing CPN and support worker, who both show great understanding and compassion. They also treat me as a person and not a diagnosis. Thanks to there support and confidence in me I am currently doing the ‘KUF’ Personality Disorder training with Emergence, and fortunate enough to have been accepted to become a Personality Disorder Trainer – I feel really passionate about those that work with people with personality disorders having a better understanding; hopefully changing some attitudes and the stigma attached to personality disorders. I have posted this so that those that are struggling may feel that there is some hope out there.

  • Claire

    I’m sorry to hear of your terrible experiences of the NHS. I feel like I should be relieved to hear about this… that it isn’t just me that is repeatedly treated in this way. This still happens to me despite already receiving apologies for other things following an official complaint I made. It had taken me a long time to face making the complaint, I put it off because I didn’t feel I could cope with it and was trying to move on but things didn’t get better. Guess what? They lost the complaint. They have also *mislaid* part of my medical notes, which I reported to the Information Commission before the NHS would even admit.
    But I don’t feel relieved that it’s not just me, that it’s not just all in my head – because it makes me more angry, more frustrated, more despairing – and I don’t know what I can do to simply get someone from the NHS to return a phone call when they say they will, or not have staff mess with my head by telling me something different nearly every time I speak to them – never mind trust them to help me with the bigger things.

    I just can not understand HOW they can get away with such poor and dangerous treatment of patients.

    Amanda, I have not heard of you or read anything by you before. I followed a link from Emergence to this page. I thank you for speaking out, because as you say, there are many many other people suffering in the same way that are not able to do anything about it, be believed or be taken seriously. Thanks.

    • Hannah

      Hello there Claire, I’ve just read previous posts on here and thought I’d let you know something that may give you a laugh in particular? Although it may be it quite a hollow one… I also sent a letter of complaint, this was to the Royal Edinburgh Hospital and they also *mislaid* it. They strongly denied any possibility that they could have received it, even gave me some grief about how they ‘couldn’t answer for the royal mail’. Until I sent them a copy of the recorded delivery receipt complete with the signature of the member NHS staff who had signed for the letter when it arrived at REH. Ah. Then there was an *enquiry*. Phantom enquiry more like. But anyway. Sadly think this kind of rubbish quite possibly goes down rather allot! But hey. At least we’re not just singled out. Regards, Hannah.

      • amandagreenauthor

        Mistakes do happen in all walks of life, all services and all care systems unfortunately – it is ensuring that we help to make sure they know their mistakes so they can make changes to ensure they do not happen again, that is important.

        Amanda 😀

        • Hannah

          Hello :). This is certainly what should happen, I agree. However, just based on current form in the NHS, the word of others the country over and through personal experiance, I for one wonder just how many of these kinds incidences really are genuine’mistakes’,- wheather or not the NHS actually wants to be acountable for it’s service failures, let alone improve them. One example out of Many (and that’s just mine!): I had an appointment with a senior nurse involved in community support groups at the Royal Edinburgh Hospital. Shared with her my complaint and she asked which Dr it was about. Told her I was nervous about sharing it with her, in case she knew him or something. She wrote down a name and asked if it was him. And actually, it wasn’t. But she then went on to explain that this particular psychiatrist had only recently had a complaint upheld by the Ombudsman against him. And that it wasn’t the first one that year, either…Indeed, he gets them every year. And this, in turn, has been going on for many years. Wash, lather, rinse, repeat. And yet new patients are still referred to him, not knowing this guy could literally paper his office walls in all the complaints he receives. This is just one example of the NHS clearly not making adequate changes to prevent incidents happening again, despite them being pointed out. And it causes one to question: Just what does it take? What is the final push beyond service users assertively speaking up when something goes wrong and services actually seeing that something is put right for patients in the long term? There is, sadly, a lack of accountability and willingness to be responsible in too many parts of the NHS.

          • amandagreenauthor

            I think we could say that all kinds of service providers have issues, and the NHS also do a wonderful job, so it is a balance. We are also very lucky in the UK to have the NHS as a free service 🙂

  • sinbad king

    and so much more ,and so many.To have found recently 50 years of abuse by various doctors I had trusted, how what they were recording did not match what they were saying tome,unsupported prejudice in the face of contradictory x ray results denying physical illness in order to misportray my presentation as personality disorder;including their throwing things at me,intemperate outbursts of angey and other abusive manifestations of their problems, including emotional exploitation, including failing to record and report my concerns regarding my son which have come to be accurate after years of abuse by his mother and finally being taken into care after CAMHS for 3 years said they could do nothing with him, but made no appropriate referral and reinforced him being maintained in an environment causing his distress for a further year, and my contact being so constrained as to be damaging to his perception of fatherhood, when there has been no Child Protection proceedings focussed on me and when he was 3 I looked after him for 10 months in a private fostering arrangement(which has to be validated by Childrens Services)——and more and more

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