county transfer - getting what's due - tips please

[1Littlefoot]

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

 

    

[Gemma7]

Hi Littlefoot, it sounds like a really difficult time at the moment and I really hope you manage to get somewhere with everything. 

Has the mental health team that your son is currently with given you any indications of pathways to transfer him back to the Croydon team? Or have you spoken to his GP in Croydon where I'm assuming he's registered? It seems ridiculous that he can't be passed on to the Croydon team from Warwick. 

As for getting PIP and UC, your son should still be eligible even if he isn't under the mental health team. He clearly is not in a place that he can work. When I last applied for benefits, which might be about 10 years ago now, I was not under any team, I didn't even see my GP ever, but I still managed to get benefits, always after appeal though. Have you ever thought to contact Citizen's Advice? They were a great help to me with benefits and also might have some insights into what your rights are with regards your son's health care. 

It also sounds like your son might need further specialist therapy. Did he improve while at the Maudsley? Perhaps that's something else you could consider. 

Remember that you and your family are not alone in your struggles and it can be really tough on everybody involved. So try to take time to look after yourself too