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The Visionary

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  1. Snowbear said: “Don’t slag off the charity” I see no justification for the accusation that I ‘slagged off’ OCD UK Snowbear said: “You clearly aren’t aware of how much it has already achieved” The OCD UK website does not mention any lobbying work Snowbear said: “You seem to have a set idea of what help should look like” I quoted the NICE guidelines
  2. There is a need for some organisation to lobby the government to provide specialist care for people with severe OCD. I am disappointed that no one reading this forum thinks OCD UK should fill that need. I disagree with Snowbear’s views. I am suffering, and the diet I’m forced to eat will kill me.
  3. I have to thank you for engaging with me on this issue. In my experience, if you write to a minister they will tell you to write to your MP. If you write to your MP they will either send you a standard reply or ignore it. I live in a Tory safe seat. I honestly don’t think my MP would care if half his constituents were murdered in a terrorist attack. He knows he will get re-elected whatever happens. I did send my MP a registered letter a few months ago when things were very difficult, telling him it was a life or death issue. He did not reply. I don’t think I’m up to creating a social media forum. I worry that if I overstress myself, I will suffer another catastrophic decline in my mental health. I have raised the issue in what I thought was the appropriate OCD UK forum. I don’t think I can do much more for the time being.
  4. It seemed to me that my problems were different from those I was treated with. The therapists did not even try to tackle my problems with food as they considered them too intractable. I do not think that I am going to be cured which is why I need specialist help to cope with the problems I face living with OCD. As I said originally mental health services say I am not their problem, and Social Care say I am too ill for them to cope with. The staff at the ADRU were able to care for us quite well, because they had the right aptitude, training, and experience. People of similar ability should be employed to help and support us in the community. The alternative to providing such care is to allow people like me to suffer and die. I developed my OCD because I was a victim of crime. This was also true of some of the people I was treated with and who also were not cured. It is immoral for the government to spend large sums of money on the care of criminals, and yet allow crime victims like me to suffer and die.
  5. I have always been a very strict vegetarian. When I developed OCD I realised: 1) that ingesting a single molecule of a dead creature was as bad as eating a steak. 2) that whenever two surfaces come into contact, molecules can be transferred between the two surfaces. That means if any surface becomes contaminated by touching a dead creature, that contamination can be transferred to any surface that comes into contact with the first one. The second surface can contaminate any other surface it comes into contact with, and this contamination can be spread add infinitum. My sink had been contaminated by dead insects. Tiny splashes from the sink contaminated bowls I used for rinsing vegetables or doing washing up. This meant that all my pots, pans, dishes, knives, forks, spoons etc became contaminated. The only uncontaminated food I could eat were things that had been produced in a factory and wrapped by machines. Chocolate, biscuits, ice cream, cheese and wrapped loaves of bread we’re just about all I could eat. I could only make myself cheese sandwiches by using disposable plastic knives, and if the government bans them, I won’t even be able to eat cheese sandwiches. I have tried thinking of other things I could do to improve my diet. Unfortunately I am unable to resolve the problems. It all becomes so involved and complicated that my entire train of reasoning collapses
  6. My attention has been drawn to the following NICE guideline. Does anyone know of anywhere in England or Wales where this guideline has been implemented? National Clinical Practice Guideline Number 31 7.4.3.1 People with severe, chronic, treatment-refractory OCD or BDD should have continuing access to specialist treatment services staffed by multi- disciplinary teams of healthcare professionals with expertise in the management of the disorders. [C] 7.4.3.2 Inpatient services, with specific expertise in OCD and BDD, are appropriate for a small proportion of people with these disorders, and may be considered when: there is risk to life there is severe self-neglect there is extreme distress or functional impairment there has been no response to adequate trials of pharmacological/psycho- logical/combined treatments over long periods of time in other settings a person has additional diagnoses, such as severe depression, anorexia nervosa or schizophrenia, that make outpatient treatment more complex a person has a reversal of normal night/day patterns that make attendance at any daytime therapy impossible the compulsions and avoidance behaviour are so severe or habitual that they cannot undertake normal activities of daily living. [GPP] 7.4.3.3 A small minority of adults with long-standing and disabling obsessive- compulsive symptoms that interfere with daily living and have prevented them from developing a normal level of autonomy may, in addition to treatment, need suitable accommodation in a supportive environment that will enable them to develop life skills for independent living. [GPP] 10.7.1.2 OCD and BDD can have a fluctuating or episodic course, or relapse may occur after successful treatment. Therefore, people who have been success- fully treated and discharged should be seen as soon as possible if re-referred with further occurrences of OCD or BDD, rather than placed on a routine waiting list. For those in whom there has been no response to treatment, care coordination (or other suitable processes) should be used at the end of any specific treatment programme to identify any need for continuing support and appropriate services to address it. [GPP]
  7. My advice to Becky would be: if you haven’t been treated at the Anxiety Disorders Residential Unit (ADRU) of the Royal Bethlem Hospital, try and get yourself referred there.They are not successful with everyone, but they do manage some amazing successes. In my experience, everyone who managed to cope with the conditions there improved during their stay; the main problem was a lot of people relapsed after discharge. While you are a patient there, you get three, one hour therapy sessions every week. The therapists are very good. You also have a room in one of two shared houses. It’s better to be in the Longfield house. Everyone is very supportive, it’s like becoming one of a group of close friends. Most people don’t want to leave. If that doesn’t work, I would suggest marrying a German in order to qualify for treatment in that country. Apparently treatment for OCD is much better there.
  8. OCD UK webpages say: “Our core belief It is our belief that everyone affected by Obsessive-Compulsive Disorder should receive the most appropriate and highest quality of care, support and treatment. That society needs to be more understanding about OCD…”. However it also says it is “a recovery focused charity”. My concern is that there is no one speaking up for the OCD sufferers who do not “recover” but remain crippled by their illness. When I was at The Anxiety Disorders Residential Unit (ADRU) of the Royal Bethlem Hospital, they claimed that they had a 65% success rate in curing people. I believe this is an exaggeration, but even if it’s right, that still means that over a third of people are not cured. I developed severe OCD because I was a victim of harassment and attacks which the police absolutely refused to do anything about. I have been treated for my OCD but the treatment was not successful. Mental health services have discharged me to Social Care and say I’m not their problem. I have been assessed by Social Care three times (because people who are concerned about me keep referring me to Mental Health Services and Social Care), and on each occasion they concluded that I was much too ill for them to cope with. I therefore receive no care or help of any kind. As far as I can see, this will not change under the government’s new proposals for Social Care. I am a type two diabetic. Before I developed OCD I ate a very healthy diet, with lots of fresh vegetables, pulses, and grains; and my blood sugar levels were excellent. Since I developed OCD, I’ve been living mainly on cheese sandwiches, chocolate, biscuits and ice cream, and my blood sugar levels are frightening. This has had a very damaging effect on my physical health; my GP and his diabetic nurse have expressed concerns about this, but there’s really nothing they can do to help. Social Care say they can’t possibly help me. I also have difficulty in making simple decisions and performing simple tasks. Because of worries about contamination I can’t let workmen into my home to fix things. My heating hasn’t worked in years, and I have broken windows. A crack in my bath causes water to pour through the kitchen ceiling every time I use it; this has caused a section of the kitchen ceiling to collapse and the rubble is everywhere. It has also short-circuited all the lights on the ground floor of my house. I have to sleep on an ordinary kitchen chair, which means I sleep very badly. When I was at the ADRU, there were three other patients who also had difficulty performing simple tasks and whose homes were in a very bad state (heating not working, broken windows, problems with vermin et cetera). Two of the others had also developed OCD as a result of being crime victims. One of the staff told us “there’s nothing unusual about the current intake; we get people like you in all the time“. The government spends a fortune on the care and rehabilitation of criminals; It spent £13 million on the Yorkshire Ripper alone; but crime victims who develop severe OCD are just left to suffer and die. The staff at the ADRU were able to care for us quite well, because they had the right aptitude, training, and experience. People of similar ability should be employed to help and support us in the community. If OCD UK does not make our case to the government, then who will?
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