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OCD UK should lobby the government to provide care for those with severe OCD


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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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  • 2 weeks later...

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]

 

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On 09/09/2021 at 10:32, The Visionary said:

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.

This may seem like an obvious question, I know that you're suffering and it can be very difficult to be motivated but why do you feel unable to tweak your diet away from the one you describe?

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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

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Thank You for your explanation, it was unclear from the original post that the problem stemmed from your OCD, which I can see that it does.

Perhaps it could be helpful to start a thread in the main forum about the problems with your OCD, rather than me continuing on this NHS forum, as they are different issues.  I appreciate that you've had treatment that thus far hasn't helped you but your OCD issue isn't very different from many others, only that you haven't found a way of successfully making any progress.  Perhaps you could tell us a little more about your in-patient treatment and why you felt it failed :)

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On 30/09/2021 at 12:30, Caramoole said:
On 30/09/2021 at 12:30, Caramoole said:

your OCD issue isn't very different from many others

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.

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Have you contacted your MP, Health Minister and written to them about your situation and your feelings about the lack of support in the community?  Have you considered setting up a group or forum through social media to make contact with others who find themselves in similar situations?  It might be helpful to connect with others who struggle as you do.

I'm so sorry to hear of the problems you've encountered and that it's had such a detrimental effect on your mental health.  I'm also saddened to hear that you don't feel you can be helped.  It's not a feeling I share, I feel that ultimately there is the potential for everyone to make improvement although I understand that the journey towards that may differ widely and may take many attempts to find the right help.  If you feel that you aren't receiving the medical help you need then it may be worth writing to Ashley, CEO of OCD-UK to see if he can offer and advice.

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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.

 

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Please don't apologise, you were absolutely right to raise an issue that's important to you and hopefully it may be read by others who feel the same way.

As you mentioned in your opening post, OCD-UK is a recovery focused charity and most of our work is about raising awareness, about education & knowledge, about helping sufferers towards recovery and finding effective help & support.  My own volunteer role is forum-based with an aim to share knowledge and experience where and if I can.

I'm sorry that I haven't been able to offer more help in respect of your points.  If I can come up with any effective ideas or suggestions I'll come back to you.

Please don't give up entirely on the ability to improve, even if it's slowly or in small ways.  I know it's so difficult to find the strength sometimes but don't give up on yourself either or the possibility of more treatment.  You deserve nothing less :hug:

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7 hours ago, The Visionary said:

It seemed to me that my problems were different from those I was treated with.

Hi Visionary,

People always think 'my OCD is different/ my problems are more complex' until they understand how OCD works and that no matter how complex the situation you can be helped. Improving things is just a matter of disentangling the problems and dealing with each one in turn.

 

7 hours ago, The Visionary said:

The therapists did not even try to tackle my problems with food as they considered them too intractable.

The therapists may very well not have tackled your problems with food directly, but perhaps not for the reason you imagine.

I'm not a trained OCD therapist, yet it was immediately clear to me on reading your post that your dietary issues all come from OCD thinking. So the correct approach is to treat the disordered thinking, not the food issues.

 

7 hours ago, The Visionary said:

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.

 

Let's look at the wording of 'cured' and 'incurable' with regard to OCD this once and then we'll set it aside in favour of something more appropriate.

If you interpret 'cured' as meaning 'the problem is taken away and you're never at risk of having to deal with it again' then everybody would agree obesity can't be cured. Right? No matter how skinny you get from successfully dieting nobody can promise you won't ever put on weight again in the future. It depends on what you eat.

With OCD, nobody can promise your OCD won't come back in the future, it depends on your behaviour.

Most people also agree that weight loss IS possible, keeping the excess weight off IS possible, and certainly living a more healthy life (even if still overweight) IS possible. Cured is simply the wrong word to use when talking about obesity - or OCD.

However severe it is, whatever complexities have arisen as a result of it, OCD can be treated. Making your life better IS possible. Will you get to a place where you have zero difficulties to face in life and zero scars from these years spent suffering? No, probably not. It's unrealistic to think you will. But if you want to get to a better place then you can. On the forum we can help you better understand why you're stuck and how to get unstuck.

Maybe you will need the help of a specialist centre at some point, but for now the first step is for you to commit to making some changes in your life, however small, and to keep working towards the goal of a better life.

You define what you want that 'better life' to look like, not anybody else. So get your thinking cap on, set aside all the rules OCD currently imposes on you and let your imagination take you to a place where things are as you'd like them to be. Picture it. Imagine yourself living that life.

That's your goal. :) Now you need to work out how to get there. Think about what has to happen (what has to change) for you to reach your goal. Write each thing down as you think of it, make a list.

Next we put the items on the list in order. Which ones can be tackled straight away? Which need a bit more time to organise? What help do you need to make each thing happen? All you have to do is decide where you want to start. What change would make the biggest difference to your daily physical and mental comfort while things are still getting sorted? That's where we start. :)

7 hours ago, The Visionary said:

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.

 

Not all help has to come from employed/ official sources. Happily the alternative doesn't have to be suffering or dying!

Here on the forum we have members with a wealth of experience and knowledge who are only too happy to support you on your journey to recovery. Note, I said recovery, not 'cure'.  I define recovery as becoming free from OCD and living the rest of your life the way you want to live. Not how anybody else thinks you should live, not how OCD dictates you must live, but your choice. That's the recovery we talk about and aim for here. :)

On 30/09/2021 at 12:30, Caramoole said:

Perhaps it could be helpful to start a thread in the main forum about the problems with your OCD, rather than me continuing on this NHS forum, as they are different issues.

Caramoole is right, this discussion has gone as far as we can take it in this forum (which is for issues relating to the NHS, not helping and advising an individual person.)

Would you like me to split this thread and put the relevant bits in the OCD support forum where we can continue to talk about where you personally go from here? Or would you prefer to start a new thread in the main forum, introduce yourself to the community and get the ball rolling that way? :)

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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.

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Visionary, you're entitled to your opinion.

OCD-UK has done a great deal over the last 2 decades to improve the help available for all OCD sufferers, including lobbying, working with various government departments to improve services, and educating both public and professionals.

Don't slag off the charity for not taking action when you clearly aren't aware of how much it has already achieved, or the ongoing work the charity does daily.

 

On 03/10/2021 at 17:15, The Visionary said:

I am suffering, and the diet I’m forced to eat will kill me.

 

OCD can indeed cause people to neglect their health. So yes, carry on as you are and you probably will die of something related to self-neglect. :(

But you don't have to continue neglecting your health. Help is available, even for someone as disabled by OCD as you.

You seem to have a set idea of what help should look like and reject anything that doesn't come in that form. It's time to think outside the box and do something differently, even if it's not the kind of way forward you expected.

There's no magic fix to OCD. Going to specialist inpatient services won't fix you unless you are willing to change.

Lobbying the government and getting the perfect OCD treatment service available to all isn't going to fix you. You can't access the services already available? Then work on your OCD and get to a better place where you can access them and benefit from them.

In the main forum we can discuss every aspect of your OCD, including your diet and how OCD impacts on that. We'll help any way we can and work with you to improve your life - but you have to want to change.

So, simple yes or no answer, are you willing to make some changes to start to overcome your OCD?

Simple yes or no answer, do you want our help?

The ball's in your court Visionary, the next step towards a better life is down to you.

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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

 

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On 07/10/2021 at 09:30, The Visionary said:

Snowbear said... Snowbear said... Snowbear said...

Snowbear also says, 'When someone fails to answer a simple yes or no question, it usually means the answer is no.'  :(

 

What I meant by 'you seem to have a set idea of what help should look like...' is that you quoted the NICE guidelines!

As if that was the only way forward and you're resigned to being stuck until specialist services, or help from social care and mental health services, is available to you.

Well, I'm saying there's usually a lot can be done even without any of those services getting involved.

On 01/10/2021 at 16:42, The Visionary said:

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

 

If you're expecting specialist services to help you live with OCD (help make life easier while accommodating OCD's demands) you'll be sadly disappointed. :( Treatment is never about a goal of 'living with OCD',  helping you make just enough changes to make life more bearable. Treatment is about challenging your beliefs and behaviour at its roots and stopping all OCD-related behaviour (even if it has to be done in stages.)  The specialists aren't interested in helping someone who isn't ready for change.

However, if you're not ready to challenge your OCD yet there are people here who understand that. People with experience of living through OCD and making the best of things while you wait for treatment to begin. We can help you get to a place where you're more ready to tackle your OCD.

I'm willing to bet there are things that could be done to improve your quality of life even while staying within the rules OCD has set for you. A fresh pair of eyes can see opportunities that someone living through a hardship day on day can miss.

I've lived with OCD for 50 years and have learned that maintaining quality of life means being willing to think outside the box and sometimes accept help from unlikely sources. Be prepared to consider things from different angles, however unconventional. In particular, I use the insight of what living through severe OCD is like to suggest things the professionals simply wouldn't think of (or view as allowing OCD to win.) Sometimes a person isn't ready to change or isn't able to face ERP and that's ok. No judgement from me. I believe we're all doing the best we can in the circumstances we're in at the time. When the circumstances change we can do better.

Which is why I hate to see someone resign themselves to being stuck because circumstances beyond their control aren't changing. Often we can't control our external circumstances; what happens to us, or what the government provides etc. But we can control our internal world - our thoughts, feelings, behaviours, reactions and choices. Small changes there can make a huge difference.

So I'll give you another chance and ask again... :)

 

On 04/10/2021 at 22:40, snowbear said:

simple yes or no answer, are you willing to make some changes to start to overcome your OCD?

Simple yes or no answer, do you want our help?

:)

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Hi Visionary

When you say that you have been transferred to ‘social care’ does that mean you have been assessed by the social services of your local authority? The carers provided by the local authority are employed by private companies who contract with the local authority. The vast majority are on zero hour contracts at and just above the minimum wage. To employ care workers who are also competent mental health workers would involve a substantial pay rise to attract suitably trained people. Unfortunately this would be politically very hard to achieve. Have you thought about moving into sheltered housing as your living conditions sound dire? They would be some support available. It is easier to do this if you are in a council or housing association property because if you own your property you will have to sell it and social housing alternatives will not be available. There are an awful lot of people who cannot managed their own properties yet remain suck in them. Good luck on improving your living conditions and getting day to day support.

Edited by Angst
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