My son has been badly let down by Adult services

[Barbado]

Hi,

I have posted months ago saying that my30 year old son mental health was not great. He has OCD and ASD. He has to come and live with us as he was living in squalid conditions in London, not looking after himself.

The story is very long and I will try to be as brief as possible. When he came back in September, we made an appointment with our GP to express our serious concerns. The GP referred him to secondary care who rejected the request and was referred to Primary care, this took 4 months, to be told by primary care that he belonged to secondary care.

In February, we had an appointment with secondary care who classed the assessment as routine, how could it be a routine as he hadn’t been seen for over 5 years. By the way 5 years ago he was badly failed and let down by the same service.

2 months later on the 11 April, he went to the same, place for another assessment? To be told that he is on a waiting list for treatment and the waiting list is very long and there are lot of people like him waiting for help..

Here are the symptoms: he neglects himself and doesn’t wash. Hasn’t had a shower for weeks, doesn’t brush his teeth or change his clothes but washes his hands non stop or using hand sanitizer . He started this spitting habit, checks doors over and over and is starting to control our household. He also makes very weird noises and talks to himself, mind you has been doing it as a child but more frequent now. He also doesn’t go out any more. It is very tiring for my husband and I as we are not getting younger.

I am desperate and don’t know what to do or where to go for help as the system is obviously failing my son.

Thanks for taking the time to read and maybe respond.

[Jofisher]

hi I think it might help you to talk to my consultant she’s is extremely knowledgeable with the social care field she will be able to advise you and guide you in the right direction. Surely this is self neglect and it should be raised as a safe guarding with adult social services. But let my advocate see what she thinks if you would like to contact her she’s been an absolute godsend to me. Her names Vanessa Evans [phone] email [e-mail] I wish you all the best. I would also register with the carers Association as they can be a great support as well. Have you spoken to MIND or Rethink for advice. ? Both of these are charities working in mental health.

[Barbado in reply to Jofisher]

Thank you so much Jo. I live in Wales though. Haven’t contacted Mind or Rethink as was expecting to get help from my local authority, sadly not.

[parasiticworm in reply to Barbado]

Was he seen by mental health services or learning disability services. That makes a huge difference what team he's under. LD are much better the MH services in my opinion.

[Barbado in reply to parasiticworm]

Thank you for your reply. The answer is MH and when I mentioned his neurodiversity , they replied that they only dealt with the OCD.

[Jofisher in reply to Barbado]

Area doesn’t matter so give her a call as she’s a wealth of information

[Barbado in reply to Jofisher]

Thank you. 👍

[outdoorsy1]

im afraid your story is very familiar. After an episode that hospitalised my son, he was released into the care of the LD team, who ultimately rejected the referral, without telling anyone, not even our gp. I only found out by chasing it up. Months later. They suggested mainstream MH, who bounced it back saying it should clearly be LD - who again rejected on that grounds that as he was now at baseline, there was nothing to be done. Obviously we want some sort of debrief, some sort of insight into what happened and will it happen again. We have just hit a brick wall. Apparently only if he has a crisis will they get involved. I am now trying to see a private consultant - which will cost ££££s and goes against my opinions re private health care... but i dont see any choices...

[Barbado in reply to outdoorsy1]

Thank you.

[Maurice_Mencap Partner]

Hi Barbado , sounds like an awful situation to be in, glad you've reached out for help.

It would be worth getting in touch with Mencap Cymru's Learning Disability Helpline. You can speak to our advisers free on 0808 8000 300 or using the contact form on online here: mencap.org.uk/contact/conta...

I hope that helps.

[Barbado in reply to Maurice_Mencap]

Thank you.

[Mybestfriends]

Sadly very similar story to ours, apart from Son has 117 Support Plan waiting to start.

[Barbado in reply to Mybestfriends]

Morning. Sorry to hear that we are in a similar situation. What are we supposed to do?

[Mybestfriends]

All we can do is, keep everyone Safe & listen to each other & do steps to Wellbeing, have you called Mencap. I must say that I'm finding the Quote 'oh your not in our area yet, so Autism help, we cannot give your Son' Unquote. Extremely stupid, & not ASDc support under area his council tax is paid to, its all Mental health cmht. Boils my blood.

[Rupertthebear]

Hi Barbado ,

I have had the same experience , sadly my son fell ill with similar symptoms you are sharing but during the pandemic but he was not seen for two years by Psychiatrist . That was an awfully long wait . The disability team are notorious for not registering him but the GP had . Basically all the symptoms you are describing seem Psychosis and he needs treatment urgently . If left untreated it can lead to Scizophrenia . Best to take him into an and e in a hospital . Get his social worker involved . Also use Jo Fishers contacts they may advise you.

[Barbado in reply to Rupertthebear]

Thank you for your advice.

[LearningLot]

These organisations might be able to help.

Mind - mind.org.uk/information-sup...

National Autistic Society - autism.org.uk/advice-and-gu...

[Barbado in reply to LearningLot]

Thank you.