Mum vs SS constant battle making me ill

Hi, I joined a while back but have forgotten if I posted. Loss of memory and many other symptoms due to stress! Mainly caused by SS in general (attitude to family carers) and the local CDLT and particular SW specifically. My son, 30, has a mod learning disability with particular language processing issues and an ASD. Sadly, since 2015, also an unrelated, eventually and unpredictably terminal, brain tumour which has caused occasional but nearly deadly seizures. And then (scarcely believable) in 2020 first psoratic arthritis then on discovery of a lump, unrelated Hodgkins Lymphoma which has scarily been treated with chemo throughout the covid crisis. Praying he gets his jab soon as well as the Agency staff. He has lived away from home (just me) for a long time at res. college then so called supported living but I have had to be very active, and have him home during medical and (many) other crises. All this stress has been magnified hugely by the appallingly poor standard of care from SS - placing him unbeknown to me in a residence with drug addicts and alcoholics, cancelling his appointeeship and providing no supervision in the evenings so he could go out and spend hundreds of pounds getting very drunk with these other tenants. Despite this leading to him getting arrested and losing his beloved voluntary job my complaint about the SWs poor decision making that led to all this was thrown back because someone from the council rang my son out of the blue and asked if he wanted to complain. Never liking hassle and easily manipulated he said no. The problems have continued despite me boldly moving him out and finding him a new flat and carer and of course now SS hate me! As a carer I can get a carers asst and (pre covid) go to coffee mornings etc but I seem to have no power at all even to raise concerns about very serious issues. My mental health (I already had Bipolar Disorder) and physical health (IBS, high BP, insomnia) have been badly damaged by my interactions with SS and their negligence but I don’t think there is a box on the carers asst for this! I just have to live life with constant anxiety not only from my son’s medical conditions but because of the troubleshooting I suddenly have to do in yet another crisis. At least in a medical crisis SS are not involved and health professionals, by and large, seem to listen and defer to me as I have all the information and can warn about difficult behaviour.

Sorry for the long rant but it all needs to be said and there is lots I left out . Any other carers in a similar position? I want my son to live as an independent life as possible but he must be happy and safe. I can’t trust SS to do this but feel like I’m fighting a battle with my hands tied behind my back. Any thoughts?

Hi Carolyn,

Your poor son with so many health challenges, life can be so unfair.

Well done you for sorting out a flat and care worker for your son - no thanks to social care - and no doubt very stressful to do.

I have read other carers who have adult children or relatives with autism (often mental health issues as well) who have been placed in unsuitable accommodation.
What happened to your son is a safeguarding matter - were adult safeguarding involved? This is different to making a complaint.

Are the learning disability community nurses involved in your son’s care - if you get a good one they can be good intermediaries to help deal with social care.


Yes, I have a running battle too, I can’t get them to do the simplest thing, and now I’m like a ping pong ball being pushed round each SW in a large team, none of them ever finishing anything properly.
Even something as simple as checking his bicycle takes years!!