1Littlefoot

I have just posted the below on the OCD support group ....I wonder please , as family members of sufferers, you too can also contribute with your ideas , tips , thoughts .. anything you think can help please . I posted on the sufferers group as my son said that the only person in our family who really understands is his aunt - my youngest sister who has suffered schizophrenia since her late teens and is now in her 50's ..and like my son was a really wonderfully able person with a really promising future ahead of her but it was plucked away . We and my son don't the same to happen to him .... he has the opportunity to get foresight/ insight from all you lovely people - ( 45 yrs ago no such opportunity existed for my sister - aren't we lucky now !) ...... please see my request below - THANK YOU. : " I My son is now in mid 20's having suffered from OCD and depression for 10 yrs. He is feeling quite low currently, angry , upset , demoralised - regretting the lost years and what might have been if he'd not got ill - wishing it had never happened. .. even wishing he had an accident instead as people understand that ; feels he is still stigmatised by others /society - asking why isn't he where he should be by now ; and the women/partner stakes feeling bleak to him - feeling judges badly . BTW he's handsome , kind, loving, caring , considerate , v intelligent, sporty ( when not stopped by OCD) , values world not money and greed ; ... .. I know I am his Mum but women do swoon on appearances and grandmothers love him too ... really ! Many were envious of him at school . But I guess the grass is always greener on the other side .. So pl can you help .... .... my query .. : I am keen to know if anyone with similar concerns and has successfully moved forward ( I recognise its v hard) can share any tips / resources / models of recovery/ websites/ articles / anything that you've found helpful in your journey please. The late teens and early 20's are tough at the best of times - and he is now seeing how his friends are getting on - he was a top A level student with a plan of how he wanted to help the world be a better place for all. So my own view - its hardly surprising he feels this way and need not beat himself up about it .. the fact he is now actually saying it, I think is a good step .... I hope it is .... the trick is for him to turn this horrible feeling into something positive and helpful . I have been picking up info in the hope its worth sharing with him / suggesting to take a look / or at least proving insight from it e.g. models like SAMSHA (https://www.verywellmind.com/what-is-the-recovery-model-2509979) , the stages of grief https://www.psycom.net/stages-of-grief / the change curve ; things like acceptance and anger management ; ... .. stuff that helps him understand his feelings , so he can see its a phase that if he understand it is another step on the road to recovery and he can use all the energy spent on regret with much more positive things that might help him find the strength to tackle OCD head on .... to see the NOW and make the best of the cards dealt and 'do' things to make his life the one he wants, not what OCD dictates ... still with so many may years ahead of him... just like the tale of the hare and the tortoise .. he can do this ! Plus, although hard for him to see, its hard to see how , with the hard knocks that OCD throws, that he is stronger than he can ever imagine, to have come this far ; and has learned things that will help him ... and make life easier .. and help him move forward well. Anyway .. that's where I have got to ... so anything at all that you've found helpful would be brilliant!! I could compile what I get if people are happy for me and share back in full . Many many thanks

My son is now in mid 20's having suffered from OCD and depression for 10 yrs. He is feeling quite low currently, angry , upset , demoralised - regretting the lost years and what might have been if he'd not got ill - wishing it had never happened. .. even wishing he had an accident instead as people understand that ; feels he is still stigmatised by others /society - asking why isn't he where he should be by now ; and the women/partner stakes feeling bleak to him - feeling judges badly . BTW he's handsome , kind, loving, caring , considerate , v intelligent, sporty ( when not stopped by OCD) , values world not money and greed ; ... .. I know I am his Mum but women do swoon on appearances and grandmothers love him too ... really ! Many were envious of him at school . But I guess the grass is always greener on the other side .. So pl can you help .... .... my query .. : I am keen to know if anyone with similar concerns and has successfully moved forward ( I recognise its v hard) can share any tips / resources / models of recovery/ websites/ articles / anything that you've found helpful in your journey please. The late teens and early 20's are tough at the best of times - and he is now seeing how his friends are getting on - he was a top A level student with a plan of how he wanted to help the world be a better place for all. So my own view - its hardly surprising he feels this way and need not beat himself up about it .. the fact he is now actually saying it, I think is a good step .... I hope it is .... the trick is for him to turn this horrible feeling into something positive and helpful . I have been picking up info in the hope its worth sharing with him / suggesting to take a look / or at least proving insight from it e.g. models like SAMSHA (https://www.verywellmind.com/what-is-the-recovery-model-2509979) , the stages of grief https://www.psycom.net/stages-of-grief / the change curve ; things like acceptance and anger management ; ... .. stuff that helps him understand his feelings , so he can see its a phase that if he understand it is another step on the road to recovery and he can use all the energy spent on regret with much more positive things that might help him find the strength to tackle OCD head on .... to see the NOW and make the best of the cards dealt and 'do' things to make his life the one he wants, not what OCD dictates ... still with so many may years ahead of him... just like the tale of the hare and the tortoise .. he can do this ! Plus, although hard for him to see, its hard to see how , with the hard knocks that OCD throws, that he is stronger than he can ever imagine to have come this far ; and has learned things that will help him ... and make life easier .. and help him move forward well. Anyway .. that's where I have got to ... so anything at all that you've found helpful would be brilliant!! I could compile what I get if people are happy for me and share back in full . Many many thanks

Any advice please on best way to go about switching care between one county and another WITHOUT being put to the back of the queue again and having to wait for over a year to be allocated a psych as was my sons ( age 25) experience several years ago - despite having an appointed psychiatrist and known risk of self harm? I believe patients are supposed to have continuity of care between county boundaries - that's not been our experience. instead it took over a year tpo get all the medical records transfer and the new county NHS to act for him. Despite the fact I and the family GP made sure all his records were sent at great effort! My son is no longer in one county at unie but living at home with parents now in another county. He is under the care of the psychiatrist / on meds at the unie county - has had a long bout of therapy which has come to an end. He has talked to the psych twice - no video just voice - in the last 2 years by phone - has had no follow up routine blood tests as he should due to the meds he's on. He 's asked for therapy just recently - he's been having suicidal thoughts and asked for therapy and was told to self refer to IAPTS ( which in that county is only for mid level of need |) he is getting now proper care - his progress has flatlined. Our family GP at the parental home county where our son would get re-registered has advised that to say to his current pysch and GP he needs to move counties and ask the pysch to send a letter to the family GP saying he needs continuity of care and then its then up to the family GP to make sure he gets it. the of course we are into the journey that awaits in our family borough - which we are told is the worse in the Uk for pysch care. ... talk about out of the frying pan and into the fire comes to mind! we afear this too as to get any care for our son n when he was much much worse took official complaints and involving the MP. What do you think ? Have things changed / rules changed that give him more traction this time round? Am conscious of the horrendous effect of Covid and the lack of pysch staff . Is there anything more that my son can do to make sure he gets proper care - gets continuity of care - and not just some odd locum psych that fiddles with my sons meds without seeing him / doesn't ensure routine physical checks as he should and shows some better understanding of the therapy that is required. My son has never asked outright for therapy - s this is a really important step and a great opportunity - which will be gone if he doesn't get it pdq. Any ideas welcome please. many thanks

mmm I can try .... they've not previously offered occupational health .... I can dig around in the area nr unie and see what there is so he can ask directly - see if any offered remote .... might then prompt action .... thanks

Hi all, Just wondering if anyone has any tips please for transferring my son ( adult - 25 - OCD+ depression + miserable and loosing hope - he's a very able chap - high intellect and has had to leave unie Biochem at a prestigious unie so feels somewhat urghh to say the least - plsu all hte pandemic added .. having tried so hard after many attempts all twarted by damn ocd ) NHS psychiatric care and GP from one borough/ county to another - back to family home/ GP having been at unie in another part of the country. He, parents and docs, have until now, decided that was best to leave him where he was as at least he's in the system - especially since it took a whole year to get him properly transferred and into the NHS mental health system when he moved care from London to his unie location. Now with the pandemic demands we have been equally reluctant .Yet his brother, who has remained in the home system and also has mental health challenges has easily re-entered ( for the third time - but he does have T1 diabetes too - think might help??) the NHS mental health system and has got help - not a psychiatrist or therapy but occupational health support - which will help boost his confidence and get him occupied and out of the house ( we are paying for private therapy and psych) . Occupational health support would really help the son stuck with unie location support structure that is now too distant and stops him from getting the wider support beyond meds - and an easier hope of the possibility of therapy. Any ideas pl. to : - get an easy effective transition - so he doesn't go to the back of the queue with ZERO support - and all his papers follow him ( I had to do the lot last time - urghh !) - get any other occupational type support ..... : ........... - he's at home in the circuit of Kings College / Maudsley/ SLAM Recovery College etc ... (so maybe could get support as brother of the son who is in the local system? ) - any charities that might be able to help - ano ideas please. many thanks

Ah thank you - I know Brain Lock - thought I recognised them! Read so much - lose track in a quest to find things that might resonate with son. ?

Has anyone come across this .... Dr Jeffrey Schwartz's Four Steps for OCD - is USA ... makes logical sense to a mum of a 25 yr old son that suffers with OCD .. is simple - easy to recall when you need it most .... but interested to know what people think - as is not CBT or directly ERP as such .. or is it? many thanks

Thank you. At the moment its hard to even get him out of bed until mid afternoon ....... .. he's cut off even talking to his friends. So your ideas are a great reminder for how to encourage him .... I'm finding it pretty impossible to talk to him in terms of goals, easy first steps ... ... and dreams and hopes conversations get caught up in an OCD cycle of stuckness - ie questions around how does he know any choice he makes is the right choice / doesn't want to get it wrong .... so he continues to do absolutely nothing. he's so sad ....and his confidence is rock bottom. can't find a way of breaking the cycle and now he has stopped unie he has nothing to get up for in his mind .. urghh ,,,,, ? he's reached out to the psch ...( a good thing .. he did it himself) . ... so await a new appointment - but the treatment will be review meds and x fingers therapy - if psych and son thinks that is worth trying - given past history unless son really wants it then doubt the doctor will recommend. Sort of feel I must leave him to find his own way out of this .... .... but know depression doesn't make that possible so well .. and if not careful will end in a high risk situation ( as has been before) ...... ummm ?

thank you - sorry for delay - been somewhat distracted -work/ son's OCD ! and now the fact that he is completely stuck - doesn't believe anything/ therapy etc will help him . I was thinking of the Future Directed Therapy as with or without OCD he has zero goals - so hard to see how he can move forward at all . mmmm. the video looks helpful ....to me anyway! x fingers something resonates with my son.

Has anyone had any experience of the use of Future Directed Therapy ( FDT) - as an adjunct to normal CBT etc - it supports improvement in depression suffered alongside OCD? Seems to make some sense to me .. the Wikipedia entry says it is based on the thinking of Melges who "proposed that the harmonization of future images, plans of action, and emotions restore a person's sense of hope and control over the future: "Thus, with hope, the personal future is not certain and fixed, but is viewed as being open, unfrozen, and full of opportunities." . Clinical trial results seem to say it has good outcomes - better than CBT for those suffering with depression. Not found any trials for those with OCD and depression. Seems for those like my son who have an OCD that is all about fear of the future and having certainty (caused by things from the past ) - when of course there is none - FDT might help ... especially as courses of CBT and other therapies haven't worked enough on their own to get him functioning normally - although they have helped improve things for sure. . FDT seems to package up lots of ways of looking at things that many TED talks and inspirational people talk about ... most seem to be very future orientated and about making a future life they want ( not what they don't want) ..giving hope and light at the end of the tunnel ... something my son doesn't have too much of at the moment. Any thoughts/insight / experience please? Many thanks

Does anyone know anything about Brain in Hand app - see https://braininhand.co.uk/ - it is '"a professional digital support system which helps people with making decisions, managing anxiety, and dealing with unexpected situations. " I wonder if it is helpful for those with OCD ? It certainly seems to tick the boxes for things I know my son who suffers OCD and the other son who has GAD struggle with . I often end up being the support to my sons that this app seems to provide .... and as I am not getting any younger I am naturally keen to see what there is that can replace me! And help my sons be independent! Sooner hopefully .... x fingers.!! many thanks

My adult son is unable to continue his unie studies due to ocd/ depression ( an ongoing 7 yr.+ story) .... ; so after it taking a year to fully transfer him from home in Croydon to Warwick mental health community services where he was at unie and got treatment - we are now looking to get him transferred back home to Croydon. In that intervening year we paid privately for help for him - ironically it was the same psychiatrist that is treating him in the NHS! He is under the care of a psychiatrist in Warwick , has medication and has been having therapy - ; worryingly the therapy is due to end mid-August ( son has only just told me that) and while much better, son doesn’t think it’s helping ( it’s continued in lock down and yesterday he put the phone down on the therapist! ) . Son is now at home demoralised/ lacking in confidence/ still with OCD and depression/ with a bad back (another saga – but much of the pain is anxiety related – albeit there is some actual physical damage – but minor - all fully checked out) plus a badly sprained ankle. He did make friends at unie despite everything and has a girlfriend who has stood by him and helped … there are positives - if only he would accept them and build on them. He can’t seem to find any purpose to his life and feels the normal stuff the rest of us do is all a big distraction …. instead he plays RuneScape for much of his waking hours (much of his time in bed asleep or avoiding general normal functioning life). He hates his life but can’t find a way to stop himself from being stuck in it - the ocd brain block. As we see it a life of great potential – he is very able if only he’d believe it - in danger of being wasted. And him being unhappy – and I fear ending up at risk again. If he loses NHS community mental health support, we will need to pay for help and now at 24 yrs. old and us his parents 62 nearing the end of working life and limited pension - he won’t let us pay. And anyway, he keeps saying therapy doesn’t help …. he has had loads … with incremental benefit. and he’s tried the best – Maudsley, Dr Veale … etc ..etc ..But at least he’s had NHS and decent therapy and he has actually made some progress. .. albeit gradual over the 7 yrs. He’s still on meds – 200mg sertraline and 125mg risperidone / day. So not smarties. So, he needs to be under a psychiatrist. So …. any tips please on how we ensure he gets transferred back to Croydon and gets assigned a psychiatrist – rather than being discharged out of the mental health system and just back into the family GP who is useless on mental health matters. If he is squeezed out of the mental health community support system it will mean he loses PIP; UC will insist he looks for work – he can’t even get out of bed on time … and so, he’ll lose that. Money probs will ensue at home putting even added tension on the family – I have another twin son in a not dissimilar situation + has T1 diabetes …. So, I am desperate to keep whatever help for my son as I can in the hope, he can live independently safely …. and not be reliant on his parents – as the help we can give is rapidly diminishing as we age. Croydon has a waiting list till the next millenia for therapay … and unless he presents as suicidal / seen as a high risk there’s not a chance in hell of help … as it is I had to complain at national level to get help when he was suicidal . Not helped by the fact that to the uninitiated he presents as in full control / alert/ engaging etc … what they miss on all the records - written in plain english as no one reads the records - is that he says he will give no warning he will take his own life. I am the only one who has seen his attempts coming .. a mum’s 6th sense … of closely watching him … like no one else does … So how can I keep the system on his side … he needs it for his own independence .. and safety? What’s the process/ rules/ laws/organisations / authorities that need to be spoken to .. what can I harness / get him to harness ..?? Or do I just let go ….. and see what happens …. It might just nudge him into action? Maybe give him the confidence - after all if the system says he’s not at risk/ not that ill and I don’t fight that then he’ll have to take care of himself? Ie cruel to be kind sort of approach … ?? ( While still being ready on the sidelines quietly to catch/ support if he asks ; Sorry for long post … but this change of situation and past experience is worrying me a lot .. I know what a fight it was before urghh ) . Many thanks

Thank you dksea ...is good to hear from others who have experienced this ... and recovered. I'm mindful too that in so many ways he's much better and of course more mature - although I think the illness makes the whole growing up things more complex as he's missed out on so much of 'normal'. i'm heading towards the psch .... I keep flagging the need to do a meds review ...no ones seems to be listening yet. If he's getting better i'm thinking that maybe he could reduce his meds .. but he has taken another year out of unie as he was struggling ....but as he's at home safe with us then I wonder if it's worth a try to see if eh gets more motivaton and aliveness back! So is all swings and roundabouts . Your note gives hope. and noted re girlfriend. .. my first duty to my son always. thank you.

My son ( 22 yrs) is struggling with OCD ( mostly mental rituals - Pure 'o' ) and depression - being treated with Sertraline at 200mg daily and Risperidone - 0.75mg and 0.5mg/day. He seems to be unable to really understand his emotions or show the normal highs and lows of life. Since diagnosis and taking medication he has rarely shown the severe lows of total despair ( when he'd get angry or cry uncontrollably) ... but equally sees no real joy ... he can seem happy enough when in the middle of activities ( when distracted from OCD ) especially with demanding children but often expresses that he wasn't really happy/doesn't really know what he was feeling. I guess the meds stabilise his mood and so help prevent the severe self harming effect of the illness and moderate the intrusive thoughts etc ....... but does that mean he should be missing out on basic love and joy and upsets that go with what is essentially human life? I ask especially, as he's had an on off relationship for a year with a girl that loves him greatly and has so loved him and understood the illnesses and can see the 'real' person underneath the illness.From the photos and my sons replies and behaviour you'd think he was equally besotted. But then he's miserable by it all, confused, unsure. this time he has not only broken it off ... again... but in a very blunt and final way and in an unemotional way with no consideration for the young lady ... in a way that is not him and certainly not the way he was brought up to behave towards others. I know OCD makes him uncertain in all his relationships and emotions. And when I have asked him about how he feels he just says 'I dunno' and shrugs his shoulders then retreats to his room / bed - disengaging .... making me think he's not happy at all. It's all so confusing for us parents looking on and for the lady - who is calling me seeking explanation and understanding and is distraught. I worry my son will never find love and happiness. Any thoughts/ insights welcome and any guidance as to how I can help him understand what's happening to him .... so I can also explain to help the lady ..... just in case son regrets his actions and wants the relationship on again. I'm trying not to get involved but is hard when lady is crying down the phone and son is disengaging. I've Any thing we should raise with the Psychiatrist re meds.? And I'm pretty useless on this front anyway- I've been married for 40 yrs .. and this is my sons first and only relationship . So I do wonder if some of his behaviour goes with the territory of learning ..... his teenage yrs ruined by OCD /depression. Relationships can be hard enough but with OCD/depression .... mmmm Thank you.

that sounds helpful - thankyou I'll show him .... see how he responds - now you've described this process I recognise bits from what he has told me ...... by knowing this in full it will help when he finds it just too challenging .... you don't seem to set time limits on allowing ruminating ... is more black and white ... perhaps easier to work with uncertainty is rife with OCD. Will let you know .... xing fingers! Litllefooot