Posted: Tuesday 28 June 2011
Guest post from Glen, on the difference one caring mental health professional can make.
In 2009 I moved to London and to the care of a new support worker at the local Community Mental Health Team (CMHT). Annie was my third support worker that year, but she was amazing from the start.
Annie was there at every turning point as I settled back into life in the city. She helped me get over the hurdles of getting housed by the council, researched welfare rights advice for me, and even helped with my housing repairs. Above all, she was always there for me. In my very rough patches, she helped me to get back up, dust myself down and gave me the encouragement to fight another day.
Five months into my care with the CMHT, I found out (from the back of a sicknote) that I had been diagnosed with Emotionally Unstable Borderline Personality Disorder. Despite having had several diagnoses for the two years previously, this was a real shock to me.
Annie sat me down, and went through each of the characteristics of being borderline. No one had ever done that with me in the past. When she had finished, I didn't feel like I had a label hovering above my head. She taught me that there were issues that made up my diagnosis, and helped me to understand them. I would see Annie every two weeks or so for a cuppa, and a pat on the back for getting as far as I had done.
Towards the end of last year, Annie told me she was leaving. My heart sank. I felt as if I had just been dumped. There was an overwhelming feeling of loss. A month later, I met Annie for the last time. She gave me a hug and told me that she was proud of me. A year of her support, encouragement and warm smile was now over. I walked home almost unaware of the pain caused by biting my bottom lip to stop me from causing a flood with my tears.
Three months after Annie left, I received a letter from Julie, my new social worker at the CMHT. The first thing that glared out at me from the letter was that she had 'agreed to offer some short-term support' - wow, thanks. I phoned Julie, and asked her why it was deemed 'short-term': my borderline hadn't gone away (boy do I wish it had done); I was still suffering and it was getting worse.
Julie told me that as I was on the waiting list for therapy, she would only be supporting me until I started the CBT. She wasn't very considerate about the explanation. When I asked why it had taken three months to get a new worker, she told me it was all down to budget cuts. She said I needed to get used to standing on my own two feet, so wouldn't be seeing me that often. Yes, I thought, I need to stand on my own two feet, but at my own pace.
At my last meeting with Julie, I asked what would happen when the CBT ends. BPD can't be cured, you just learn to live with the emotions. She asked me what I meant. 'You will need to see your GP if you have any problems' she eventually replied. I asked about the care of my partner — could he talk to someone about caring for me? 'Budget cuts mean we don't have the staff to do that, but he can speak to me and I can refer him to a charity'. My feeling inside was clear — you can't even speak to me with care, how do you deal with someone that is watching his loved one virtually self-destruct as he bounces off the walls?
When the therapy ends, I will be alone, having to fight through my GP's automated appointment line to see him for having a 'wobbly five minutes'. It's clear that the care and compassion I received from Annie back in 2009 has gone.
I feel like I'm just seen as a diary entry, and a chance to air a grievance about cuts that are already obvious to me. Since when was care and compassion from a fellow human being something that came out of a financial budget?
It's true that I often see things in black and white, but this has never been clearer to me: my care shouldn't be black and white, it should have colour and warmth. Like it used to.
Glen
Sadly services really ARE black & white now - you're either critical or 'in recovery' on your own, there is no middle ground, no enduring difficulties and no longer term support - not only for BPD, people with a psychosis diagnosis are also only getting depot appts and little else. Services are even more medical model now but this is insidiously done using the rhetoric of 'recovery' which means in-and-out of services asap, returned to 'productivity' with everything being time limited. What matters to most people and what individuals need don't come into it.
Although this is essentially about cost cutting and paring services to the bone what I find most galling is that health service management are telling us this is for our own good and if anyone dare have more than 'short term' needs they then get the trite little remarks you received Glen about 'having to stand on your own two feet' which is ridiculing people's intelligence.
I really feel for you after reading this post. I can understand the value of a consistent helpful worker who believes in you, and the pain on losing them especially when no replacement is there. It can be a harsh reality to sample much of the rest of the mental health system realising that not all staff care that much, they are not so psychologically minded and they regard BPD as an 'only' condition rather than a severe mental illness.
While endings are highlighted as important in the NICE guidelines for BPD it seems as though this wasn't recognised in your own case as you were just left for three months. Why give a diagnosis and not follow the NICE guidelines except when it suits them (the professionals)?.
I am also receiving fixed term therapy and expect to go back to my GP afterwards. I know I am fortunate to get this as psychotherapy services are reduced with budget cuts (unless its the ones in primary care that see people for six sesssions). Mental health treatment has changed so it is time limited interventions and crisis management (short term, weeks not months). I don't see how this can heal the inner pain of a long term condition either, one that still has a stigma unless you find professional workers with a different attitude, who can work with who you are not the label. Gps are just going to become frustrated when finding they are still spending a lot on A&E attendance and signing sick notes due to long term debilitating emotional distress.
In some areas there are specialist services for PD you could ask about, but it sounds like you just wanted to be heard and someone to be with you as an individual, -in a mental health system cut to the bone this is getting even harder to come by now.
I wonder whether you had a choice in whether to have CBTm if this is the right sort of therapy for you too. You do deserve more. I am sure that so many others have similar experiences and just have to take it, and be grateful for what they can access short term.
I can completely relate to your post. In May I was diagnosed with severe depression and an eating disorder. I was told I could have therapy, but it would be a long wait. In the mean time I was given new anti-depressants and contact numbers for the CMHT if things got 'worse' - at that point I was suicidal, so I struggled to see how much worse they could really get. However things did get worse - this resulted in an overdose and I ended up in A&E. After that, trying to get support has just been impossible. The GP has said there is nothing else they can do, as I’m referred to the CMHT, but the CMHT will not provide any support. I was told 'not to sit around moping' as that will only make things worse for me and that 'I couldn’t rely on the CMHT to cope when things were tough and I couldn’t keep phoning them' – despite the fact that was the first time I’d ever asked them for help! I wholeheartedly believe it's not a good idea to become reliant on a service for a long-term solution, as the cuts are going to impact greatly on the service they can provide. However, to phone the CMHT, with them knowing you're actively suicidal and them basically saying 'you're wasting our time, we can't help you' just leaves me wondering, where on earth do you go for help and support at such a difficult time???
I agree with the comment about the misappropriation of the "recovery" concept. As a survivor and now a psychiatric social worker it sickens me to see how the medical model has twisted the movement (in much the same way Cameron's "big society" is a cover for cuts) to do less for the people who need and want help while at the same time becoming increasingly punitive and custodial to the people who want nothing to do with statutory MH services. Any self-help or similar techniques I try to promote with the service users I work with are routinely derided within my team, which is very nurse-heavy and medicalised. The status quo seems to be "take your medication like a good child" or "you're wasting our time, get lost" with nothing in the middle, no room for the importance of discovering and repairing one's identity or sense of meaning.
Although it worries me personally and professionally, I do wonder if this coming crisis in psychosocial approaches to mental health (I know CBT is being trumpetted and promoted everywhere but for all the goodness that it does (and it does) there is a certain "conveyer-belt" aspect to it; you have been restored to factory settings... I've seen how crises can lead to opportunities and that gives me tenuous hope...
I really sympathise with your predicament. Until recently I saw the same doctor at the local mh clinic every three months. She has been very supportive and I could always phone to get an interim appointment if things took a turn for the worse. Now that has all gone and I have been 'returned to Gp's care'. I was told that if I felt I needed more support I could access this on an ad hoc basis through my GP. The reality is that I went to see him three months ago because I am finding it increasingly difficult to deal with this current depressive episode. He said he would refer me to the local MH team and that was the last I heard from anyone. (Except for a brief phonecall from the team just after my doctors app saying they hadnt forgotten me and would be in touch soon.)
It seems I am completely on my own.
As the mother of a daughter with BPD I find your comments so bleak. My daughter has been told what sort of therapy she needs, but then informed there is no money available to supply it. I've been in touch with my MP and am still awaiting a response, but even the kind of support Glen was given (and then lost) would be so helpful and constructive. There seems to be nothing available, just a brick wall for banging your head against.
I think I am in the minority right now but it has taken a long time to get there. I am DX with BPD and have recently accessed a group for Mentalization Based Therapy a new concept in the UK in the treatment of BPD. I am currently taking part in the introductory sessions which are 8 weeks long and the actually group starts in September and lasts for 18 months. I also underwent 4 assessments to obtain a place, or which there are only 8 for people in my town. For the first time in all the years I have been in the mental health system I feel more supported. I have access to the CMHT and a Care Co-ordinator and works alongside my NHS Psychiatrist and the therapist who run the group. I write a blog on my experiences which people can find over at ‘Sketches of Chaos’.
i was told all these years since 1985 that i'm too ill to work. i cant face filling in the form for the medical assessment, i should go to nucleus for help and i have an advocate lined up. i make abusive phone calls. the mental health system are now going to abandon me. i should never have allowed myself to depend on them so hearvily. now it's like the rug is being pulled from under my feet. i was trying to live with my borderline diagnosis without further overdoses and abusive phone calls. i am currently in debt . i don't want to work at all. i will end up back where i started in 1984 when i was desperate for help and no one listened and i smashed a phone and window and was put in Holloway Prison for £50 of criminal damage when all i was needing was help, support and a roof over my head. i feel like sisyphus endlessly trying to get well and just when i am 'almost there', the safety net is being taken from me . i am now 51.5, childless, alone and in debt. without the safety net i will not last long. i feel suicidal and refuse to attend this ATOS medical. it is a farce
Hey Anna-Rose,
I'm really sorry to hear that things have been so tough for you. It sounds like you've had a really rough time. Please, if you're feeling suicidal, I hope you feel able to reach out to organisations like the Samaritans.
Perhaps it's worth contacting our infoline to find out if there are services you haven't yet used near you? info@mind.org.uk / 0300 123 3393
Take care.
I understand where this blog is coming from, and it is scary. A nurse from the personality disorder service in my area thinks that the cmht are becoming rapidly specialised, i.e. dealing mainly with bipolar and pyschotic disorders. This leaves out others that need and deserve support, unfortunatly there isn't enough resources available.
I consider myself lucky, my gp is supportive. I now see the nurse again from the pd services, and see a practice therapist. Though before referals were made to see these people I had gone down hill enough over a few months that I was starting to act on my suicidal thoughts! I am also in the process of being diagnosed for aspergers, which the pd nurse thinks will help me to better access services in the future, particularly support housing, and help from the national austic society.
Something that may help you Glen that helped me is social inclusion work. I had an inclusion worker from the social services working with me to choose activities and education (or even work, volunteering), and engage with them. She went with me to interviews, did research for me. I'm now discharged, in part to service cuts and no longer qualifying the criteria, and in part because I was doing well and accessing stuff and sorting my social side of my life out.
I came across the Mentalization website a while ago, and showed it to my daughter. MSLeftie were you happy to access their help, or did you fight it at first? After my daughter had read all the information, she didn't think the therapy applied to her. I find the biggest problem with caring for a BPD sufferer is trying to cope with their constant feelings of ambivalence. She wants to get well, but she seems to fight it as if she's scared of what will be on the other side. This is also her general attitude to most things in her life and I feel I have to keep encouraging and pushing.
I can totally understand this predicament having been messed around by trust after trust only really getting any help when i borrowed money to see a private psychiatrist for a short time resulting in me finally getting a proper diagnosis and being taken more seriously by mental health trusts.
I mean no offence to any capable NHS psychiatrists but frankly the ones I have seen are really terrible to the point of being criminally negligent. If the government wants to start actually helping people to recover and cease to be the massive burden they like to paint us they need to look first at psychiatrists and their ability to do their jobs. The gulf between private and public mental health care is frankly off the scale. They show no interest in recovery only in sedating and making sure you are not a nuisance to 'sane' people. I cant comment on psychologists as i have been waiting many years to see one.
How about a national patient review of each of these doctors and see them as closely monitored(externally) as a teacher would be!
Fortunately I was offered an Occupational therapist as my support worker who has been a massive help to me even as just someone to talk to during dark times. I've have improved more with her help than in ten years of NHS psychiatry/psychologists. The consultants seem to think 5 mins ignoring you, refusing to even looking you in the eye as they scan over your unread notes is sufficient to 'heal' you. We shouldnt underestimate the usefulness of good support workers. They are the only lifeline for most of us!
Why must we recieve second class treatment compared to other areas of NHS medicine? Are psychiatrists even held accountable for the fates of their patients?
Ive been forced to pursue fairly drastic alternative medicine without medical supervision as I have no faith in these people anymore.
I know exactly how you feel.
I suffer from Bipolar 1 and have several co-morbid mental illnesses. Unfortuanately I'm unable to take any medication as I have almost died several times due to severe adverse reactions to all classes of medications currently used to treat mental illness. I have also been refused psychological therapy due to being "too unwell."
Despite the fact that I am unmedicated, and that my mood is in a constant state of maddening flux (ranging from psychosis to sucidal to catatonic), I'm an after-thought to my CMHT worker too.
My CMHT worker is supposed to visit me every 2 weeks but I frequently go months with no contact from him, and when I try to make contact I can never reach him. Also, he will often phone me within an hour of my appointment time to tell me he can't make it because he has to go to a meeting, see someone else, has an 'emergency' etc.
I've begged for help.
I read the appropriate NICE guidelines for my illnesses and quoted them in an attempt to appeal to a 'higher authority.'
I studied neuropsychopharmacology to try to find medications that I might be able to tolerate - which I did, but I was told I could not try them as they are not licensed for use in my illnesses in the UK.
I've even considered making a formal complaint but, after 3 years, I'm too tired to keep fighting.
I'm tired of being made to feel like a burden because I am, as my psychiatrist and CMHT worker put it, "a complicated case." I have given up, and tomorrow none of it will matter any more.
I begged for help.
@someone who doesn't matter.
Dont give up on yourself because of the actions of these health 'professionals' often their arrogance means they will simply blame the patient if their judgement proves unsuccessful they will just start seeing you less and less and hope you go away.
Maybe you can look at more natural approaches with looking at your diet and maybe herbal drugs that might be of help there is alot of info out there and try to ignore the nay sayers. This has helped me a million times more than the anti psychotics,antidepressents and mood stabilisers which just made me lethargic and morbidly obese (im still taking them because I know what will happens when i begin withdrawal of dangerous drugs that aren't of much benefit)
Also if you can get yourself stable look at what charities can offer in the way of activities. I attended a brilliant arts program that really set me on the right track to recovery, they also offered gardening etc I know how it feels to be so unstable but even the tiniest bit of structure and enjoyment can help you start to see some light at the end of the tunnel! There are people that care and wish to see you regain some quality of life no matter how complicated a case you are!
Sadly all these comments and Glen's blog are indicative of what we are all having to face in these world of cuts. My local service like many others is moving towards a model of short-term interventions and a 'so called' recovery model. The truth is, locally, there is a move away from supporting anyone unless they have a psychotic based illness. We are currently moving to a new service model and the two existing Psychiatrists are 'fighting' over being attached to the psychosis team. Neither wants to work within the intensive Community Team, which will support anyone who does not have a psychotic illness or mild to moderate depression. If MPs or there loved ones had to endure the real nhs mental health service things might be different.
I also have a diagnosis of BPD and am still on the waiting list for psychotherapy. If I didn't have counselling at a local place for young people I would have no support, except seeing my GP every so often. I have a history of overdosing a lot, in fact a few weeks ago I overdosed 3 separate times in one week, but no extra support was offered to me, I was just assessed by psych each time in hospital and then sent home.
I feel that I am just a name now and they don't care, they just send me home however much at risk I am and tell me to see my GP. Even though my GP is great, seeing her for ten minutes every few weeks is hardly enough support and my counsellor is not a specialist in working with people with severe mental health problems, she has even said she finds it tough working with me and feels I need some more specialist immediate support.
I feel I do not have enough support from my local NHS menta health team, but every time I state this I am told I am on a waiting list, which I could still be on for at least another 6 months. It feels like they don't care.
I just wish there was something we could do. The nature of many of our conditions hinders direct action like marches. Id love to see a protest march on parliament with all our carers,family,friends and supporters who have seen the effects first hand of government policy made by the over privileged elite.
If we could get numbers that can not be ignored by the Tories and equally the press whose coverage of the 'The Hardest Hit march' was pretty terrible. We might finally get a voice and show them we are not the easy targets for cuts they thought. We have to start standing up for ourselves as hard as that may be and look out for one another!
Join the Mad March!
It's not just 'Cuts' as the dire predicament Glen relates is common and has been for years, particularly for those diagnosed with personality disorders for all the Department of Health's claims that personality disorder is no longer a diagnosis of exclusion.
In fact Glen was very lucky to get the service he did from Anne in 2009 as back then most local mental health and care services, including Mind and many of the other big provider charities, were championing short-term CBT courses as a near miracle cure and also supporting the ' 'modernisation' away of day, respite care and other core mental health support services they felt people had become too dependent upon.
The sort of services people like Anne worked for.
So the seemingly more distant and bureaucratic Julie isn't simply a product of the 'cuts' and its unfair to her - after all, she's just doing what her managers are telling her to do - and hypocritical of Mind to help create the impression that she or others in her position are intentionally less caring as most people who work in or around mental health know that services were pared down to the bone to suit the savings driven Recovery ideology long before the Tories ever came to power and realize that the cuts agenda just mechanically rakes over the dry bones of services to extract more.
This situation not only leaves people like Glen unsupported -and GPs have an appalling history of dealing with people with personality disorders, particularly BPD - in many cases it also leaves them more exposed to DWP benefits reduction schemes that take no account of their PD at all other than as a label to target and this additional emotional stress and financial pressure means carers also get pushed to the wall as well.
It's not enough for Mind to just blame the cuts , the mental health charity sector screwed up badly too and that's why personality disorder remains a diagnosis of exclusion.
I've stated before how I feel that PD goes right to the heart of the matter of all which is wrong with the psychiatric system, it is the moral and political front line of diagnosis. Dave is quite right, people branded as PD are more at risk from benefits reductions and from being left with no support because psychosis will be prioritised as the 'proper' illness. PD has never been taken seriously as a condition and danger to self is meaningless, CMHT's and psychiatrists have even told people to their faces that they don't take suicidal or self-harming feelings seriously in people defined as PD because that's apparently the normal state for them. I watched a couple of friends live and die with their PD diagnosis, treated like shit because it was all their fault and under their control and no one took them seriously. Then when they died, oh well it's because they were BPD, couldn't have had anything to do with the fact they got little support and what they did get was blaming, patronising and cursory. These are some of the reasons why I will never go along with the promotion of PD as merely misunderstood, it's a deeply flawed concept which takes away meaning from people's lives, identity and experiences, and is little more than a clinical insult. The best hope people have in terms of getting support is try and get your diagnosis changed or at least get one which is taken more seriously added to it. Look up the diagnostic criteria and say NO when that checklist is gone through. Service users now have to fit the categories and criteria's of services, not the other way around. I think user groups now need to help people in 'how not get diagnosed as PD' because this is where it's at.
@Dave,
Point taken. I would like to reiterate that opinions on this blog don't necessarily reflect Mind's views! The guest posts are a platform for people to share their experiences and voice opinions - they don't necessarily signify endorsement by Mind (stated at http://www.mind.org.uk/blog) - Mind is certainly not 'blaming the cuts' by publishing Glen's post.
I hope this blog can represent a variety of experiences from people who use and work in mental health services.
@Anna
Mind's views on this subject are important and shouldn't be ducked as Mind isn't floating around in some higher objective reality, it's a funded mental health service provider and rights representational body - so already struggling to manage conflicting provider and service user interests - that selectively chooses what to feature on its website and my point isn't to negate Glen's desperate experience nor to praise or denigrate mental health professionals but to put Glen's lot into its real social context, as systemic service disintegration and failure occurring over a timeframe of at least 4 or 5 years in which provider organisations like Mind have contributed to the problems people with borderline and other PD diagnoses face through blindly supporting ' modernisation ' in a vacuum and promoting the idea that CBT offers near instant Recovery for everyone .
Furthermore the recent appointment of Stephen Fry as Mind President satisifies the corporate celebritisation of mental health agenda but it doesnt do very much for people like Glen . Mr Fry has championed his own diagnosis and needs alongside a stream of other celebs, and good luck to them, but isnt it about time the lack of treatment and concrete support for people with PD , still very much a diagnosis of exclusion , was put under the spotlight by organisations like Mind as most people with a PD diagnosis arent seeking media coverage ,pop stardom or careers around having the diagnosis, they are simply seeking stability and a better foothold in life from a crumbling mental health system that just wishes they'd go away.
http://www.guardian.co.uk/commentisfree/2011/jun/28/uk-mental-health-not-in-crisis
What is everybody complaining about?
Hi Dave, we agree our views on cuts are important and can be seen in our blog posts like - The end of the NHS listening exercise http://www.mind.org.uk/blog/5198_the_end_of_the_nhs_listening_exercise and The Government must listen to the Hardest Hit http://www.mind.org.uk/blog/5044_the_government_must_listen_to_the_hardest_hit among many others. I don't think Glen's blog is the right place to discuss these issues. We don't agree that we have contributed to the problem, and we don't think that we promote CBT as a recovery solution for everyone. Mind is adamant that you should get the talking therapy that suits you - we're campaigning hard so that people can have a choice of talking therapies (http://www.mind.org.uk/campaigns_and_issues/we_need_to_talk). If you'd like to discuss this in more detail please email our Policy and Campaigns team on action@mind.org.uk. I'm sorry to read you don't think Stephen Fry will be a good president, we're really exicted about the positive changes he can help us make for everyone with a mental health problem, no matter their diagnosis. Take care, Taryn from Mind
I've got a similar story. I had CSWs that were just what I needed. Its not like therapy, its more practical and also informal. Without going into depth about things. It was suddenly cut after years of intensive care that I was used to. Although I was using less hours as time went on.
One thing that annoys me apart from not getting my treatment is when people say that I don't need it because the money has gone. It wasn't me that changed! I would rather they wrote proper report saying that this is the package that she needs but the funding is not availalbe at present for this part or that part.
At least then you could use that to re-apply when the wind of change blows in a different direction next time. Or something to wave at charities when asking for help.
Also if they want to push more peoples needs onto the voluntary sector then the volunteers should be supervised by professionals. Otherwise you could end up on a wild goose chase with a volunteer that is not really well enough to be helping someone else. Ive had this experience before and I end up having to sort out the issues of the person helping me which obviously takes up all my time and energy.
Hello to Stephen Fry I'm a fan!
thanks for listening
I was really moved by your blog entry, Glen. I feel I can empathise because I too had the experience of having found a particular member of staff so helpful and I was devastated when they left and I could no longer see them. I think when you’re vulnerable it’s so easy to come to rely on the support, which is an understandable reaction especially when you’ve built up trust and rapport with the person. It got to the stage where I felt I hit rock bottom because I found the new members of staff I was seeing so unhelpful and I was so depressed at the time. I ended up making the extremely difficult decision not to see anyone from the service anymore even though I was still very unwell (I’d recently self-harmed and was feeling suicidal).
I didn’t know how I would cope and didn’t think I would be able to cutting off contact completely. While I struggled for sometime, I found I really did learn to draw more on support from elsewhere, family and friends wherever possible and other sources, and slowly felt better. Because I was still struggling somewhat, I sought out help from another mental health professional from a completely different service and they were absolutely fantastic! I saw them occasionally to build on the progress I was making to help me recover and I no longer have any contact with mental health services.
I wanted to share my story in the hope that it might help in some way and at least provide hope that there are definitely more Annies out there – they are not always easy to find, and you might have to look elsewhere to find them, but not to give up in trying to get the right help and support to help you recover, and also not to underestimate your own strengths and coping strategies, which is the mistake I made. You should be really proud, for instance, that you got through the three months after Annie left before you were able to see the new support worker, which must have been an extremely difficult time for you.
Take care
On an additional note, in line with some of the other comments posted, I wanted to mention that I really feel that the personality disorder label really must be one of the worst diagnoses to have, (if not the worse) due to the amount of stigma that surrounds it, not just from the general public, and the media, but worst of all, within the medical profession itself.This is so clear from the experiences given on here and other experiences I have heard about. Author, Clare Allan, wrote an excellent article relating to this in the Guardian recently: http://www.guardian.co.uk/society/2011/may/03/boderline-personality-disorder-empathy-simon-baron-cohen
I really think more research is needed in the area, and more campaigning for change.
Perhaps Mind might consider a campaign in relation to this… :)
(Btw, fantastic news that Stephen Fry is the new president for Mind! Excellent choice!!)
Hi all, I've created a new category for personality disorders on the blog - http://www.mind.org.uk/blog/filter/personality%20disorders You can now read all the blogs on personality disorders there. Hope that is helpful! Best wishes, Taryn
I must agree with Dave about the corporate celebritisation of mental health agenda, will Stephen Fry speak out about welfare, the state of services and the treatment of those branded as PD? I doubt it, he was asked on twitter to speak up on welfare, and in an interview made a reference to at least not having a PD diagnosis
Louis Appleby is deluded, to state we have the best mental health service...sectionable!
I agree - Mind should consider doing a campaign on personality disorder. While campaigns on mental health and employment may reach a people already working, and try to improve work place practices, they don't help those excluded both from health services and work long term (and under pressure to enter it at a time of job scarcity where employers have a huge number of high calibre applicants). I don't know how an employer would react to a diagnosis of BPD or seeing scars, so perhaps its existing campaign should go further rather than just the positive reasons for retention at the point of diagnosis or recurrence.
The short term nature of mental health services also needs to be highlighted and campaigned about, it has become very factory line, a few months at a time. Commissioners treat mental illness in the same way as physical ill health despite the obvious differences. This allows a payment per episode tarrif (rather than block contract) but not the holistic care required. When you are diagnosed with BPD life has usually dealt a good many blows and it is often too much to live with to be rejected by services, especially having been damaged by them in the past. How can professionals use the language of PD and managing this disorder while endorsing recovery for all, it's disingenous to assert that the time limited changes in services are about anything other than saving money, its not doing someone a favour by enabling them to recover (and then what?, to where? the voluntary sector doesn't always have the right projects to meet our needs or the amount of skill in staffing, GPs and these projects are ill equipped to provide ongoing support that used to be available until deemed too expensive)
I think one thing they tried to do with wellfare reform is to make the public think badly about us hoping that we would feel ashamed. As if someone that is ill can go to work because they are ashamed!
having a celebrity on board I feel improves the image of us so that helps indirectly. Disabled people can't usually work unless theyget a luicky break. Obviously some do because they are famous!
maybe they could offer some people a 'deal' where they can take less benefits but earn as much as they like on top of it. When I was just a little bit younger I thought its a shame that I could work some of the time but am not allowed to if I'[m on benefits! I would need to earn about 30k before being fully self supporting because you need to make savings to cover periods of illness. So you should be able to earn money on top of your benefits up to say 30k
then some people would do it and that would save some money
thanks for listening
I agree Fiona, I too believe that PD is the worst diagnosis to be given in terms of how it's perceived and treated and there is even less intellectual rigor from the 'experts' on this than other diagnoses [although what is said about others is also debatable]. You can get the diagnosis on the basis of 'looking like it' with some consultants.
Mindreplyer, I'd like to see a campaign also, but not in terms of trying to make a deeply flawed concept more acceptable. Does anyone know people without a flaws in their personality? I also don't want to see euphemisms for it because it still amounts to the same thinking and practice. I favor all out removal of PD from the DSM and to start again with how people's distress is described and named. Frankly I'd like all diagnoses junked in favor of 'formulation' where we use plain English descriptions to describe needs and difficulties [in the service users own words]. Until that point, starting with PD would be a good starting point because I reckon a lot of people getting diagnosed and reclassified as PD in order to get them discharged back to GP because PD has no priority compared to 'illness' diagnoses. There is a campaign: http://www.causes.com/causes/615071-no-more-psychiatric-labels/about
As for Marsha Linehan DBT architect [which Bateman says isn't much good] "coming out" at 68 as having been diagnosed in her youth - great marketing. Interesting that she makes no reference to early trauma or perhaps she doesn't want to look at it - a bit like DBT. It doesn't add up. I think she should be asked how she feels about her treatments and diagnosis being used to justify appalling misogyny and treatment. I know it's in vogue for high profile people to 'come out' these days but I can't help but feel somewhat cynical about motivation to do so
A friend of mine was being treated for bipolar disorder for several years but in the last year received a diagnosis of BPD. Because of the new diagnosis, the CMHT stopped his medication then discharged him saying there was nothing more they could do for him. He committed suicide a few weeks later. I don't really understand this condition or what the CMHT are obliged to do, but it seems to me that if you have a life long condition you should receive life long support.
Dear Eric, What an awful and shocking story. I'm so sorry to read about your friend's experience and suicide. I hope you have had some support from family and friends for yourself. We think that if anyone needs help, or to access services, they should get it no matter the diagnosis. If you wanted to make a complaint against the CMHT we have some info here http://www.mind.org.uk/help/rights_and_legislation/how_to_complain_about_health_and_social_care Take care
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