Hi Tracey I am so sorry to hear this I know exactly what you are going through . I am
In the exact same situation . I am alone and family do not want to know about us . My son is 44 now and has been under section 3 for 27 years . He is due to move to support living in the next two weeks he has been staying at his new placement for the last two nights for the first time . He spent sometime at home with me today . He looks shattered said he did not sleep last night . Has a blood shot eye . I asked him what did you do the last two days what did you eat ? He replied pot noodle for breakfast. Out for junk food and buying vapes with a nurse. Back home three small pizzas from the freezer . Watched 4 films in his new bedroom thats around 6/7 hrs watching tv . Today he put the tv on and turned it off very quickly put his hand to his face and said I canāt watch anymore tv . Is this what support living is about sticking my son in his bedroom to watch 6/7 hrs of tv in one day. Out for an hour to the shops . No proper food in support living . I know they have just opened up as a business for 6 residents but my son is the first one as a resident and trying to transition my son into support living in the meantime. But why no proper meal? My son has been in hospital for 27 years and does not know how to cook and look after himself independently.
I asked my son do you prefer hospital where you are now or your new place he replied the new place . Next question do you prefer to live at home or the new place he replied at home . I have the space as his sisters moved out years ago I have three bedrooms one for myself . One for my sonās relaxing room with tv and sofa and a bedroom for himself and one shower room / toilet downstairs .
I am 66 now and retired last year .
We have a special bond between us he is extremely vulnerable and would need escorting at all times .
Do I let my son go to support living and a possibility of relapse due to the amount of stress put upon him ie food shopping , cooking for himself , washing his own clothes , etc
If he relapses he will end up back in a psychiatric ward number 23 in 27 years or do I look after him at home.
What happens when I reach 85 and my son then will be 63 years of age .
Whatās happens if I canāt cope
I could never put him back into psychiatric ward again after moving him back home that would break him .
My son is always saying mum what will I do without you when your gone who will
Care for me ?
I always say adam we will
Always be together .
Do I do the right thing as a mother and let him come home to live and when I get older he goes back into support living for good and at least I did something for him.
I would have given him some normality living at home for a while at least or do I leave him
in support living .
What care package would I get like myself having time to do things for myself hair done , little time at gym to unwind so basically having some respite where a support worker would then come to my home to support my son a few days a week.
I know 100% my son would never be able to live on his own .
I adore my son he is a wonderful young man but unfortunately so unwell but liked by so
many staff within the hospitals . He does get a bit angry and becomes delusional . He gets angry not towards me yet ! But when he talks about someone he dislikes he gets angry . Then calms down ā¦
He is extremely stubborn but adorable
What is the best advice please ?
Make supported living work.
Who arranged the funding?
Have you seen the contract with the provider?
From my experience SL managers are just promoted care workers who need a lot of training!
Morning
Thank you for this
I am a mother of a severely mental ill son
I am his birth mother
My son has been in hospital for 27 years
3 years ago HPTF moved him to support living and went horribly wrong .
The staff were not fully trained to care and look after my son no nurses and relapsed within weeks resulting my son being transferred to 11 psychiatric wards within Herts area over a 9 month period .
Returned back to hospital .
At present he is being transitioned to support living this happened for two nights overnight stays.
This is a new business and My son is the only resident five more will eventually be residents
Far as I know from speaking to my son he did not eat well given junk food.
He had eaten small
Pizzas for evening meals from the freezer nothing else .
This is not acceptable no change of clothes were given from the hospital for overnight stays.
I have seen no contracts from the provider I only met the manager on one visit of seeing the property for first time before it had even been re furnished.
This has not been organised well as I am entitled to see the property again now this has been refurbished and I also need to meet the staff and ask questions and what are the rules .
Am
I entitled to see the contract from the provider
I donāt have POA my son does not have the mental
Capacity to make his own decisions.
I have decided to have my son live at home what is my next step please
I was in a similar position to you. My son was severely ill a few years ago and his behaviour was aggressive and very challenging. He improved in hospital and was moved to a halfway house with support and then to a council flat. He has had ups and downs but through it all has hung onto the flat.
Our arrangement now is that he spends weekends in the flat and weekdays with me. That way I get some respite, and he takes responsibility for looking after himself for a short period. He never wants to go back to his flat but knows it is non-negotiable.
Would you consider doing something like that? Would the contract be flexible in that way?
The problem is that none of us are getting younger, and like it or not we have to help them to transition them to somewhere other than living with us at home. Itās not easy, my son had to move to boarding school at 16 when I was very ill. Now heās 46, lives in a privately rented flat with carer support. We have gradually made the flat really cosy, heās very proud of it. He knows Iām not well , only came home for 3 days over Christmas, but OK going back to his flat. A gradual introduction to the new place is vital, making sure itās homely.
Yes, you should have full details of his placement. Are you DWP appointee?
Who is supposed to be planning food and activities?
Hours per day?
Hello
Yes I know Iām getting older but he has had such a sad life
Never had a girlfriend
Got expelled from school and lost all his friends .
His sisters donāt want to know him .
His father neither
No family both sides he only has me .
I have decided to have him home Iām sure this is why his illness is not improving
Hospital for 27 years since he was 17 years of age .
Hoping his illness will improve then May be move him into support living later .
Itās a lot to think about
Iām not sure what is a care package does this include a carer or support worker to come to the home to give me time for myself for a couple of days a week few hrs each time or not ?
No I donāt have DWP appointee his solicitor does which I was never asked .
I am filling in forms now for court of protection to have this solicitor dismissed .
The placement has only just opened and Adam
Is the only one there .
He went for two nights last week and when returned he looked knackered . They left him to watch x 4 films this would have been around 7/8 hrs watching tv .
This is not healthy
He eat 3 small pizzas from freezer with nothing else on plate he told me .
This is not right !
Activity is taking him shopping to buy vapes and lunch ( kfc or subway) and Costa coffee on each day of the two days away .
I did see a plan from his social worker (placement officer) 3 hrs a day if not used up can be transferred to another day .
He relapsed badly last time they put him into support living ended up in A&E twice .
They moved him to quickly from hospital with no transitioning .
He is such a lovely person every one loves him he literally is tall and very handsome and he knows it.
I want to give him
That chance to live at home and see if he gets better he hardly smiles since he was restrained when he relapsed he suffered with PSTD .
Mutism and catatonic.
He did smile last week on Christmas Day at home which I have not seen for at least 2 and half years since he had been restrained.
Twenty seven years in hospital, reduced to 3 hours a day care in supported living ā¦ I agree I canāt see that working.
What is your sonās diagnosis.
Especially as it sounds like a new set up with inexperienced staff, with inadequate training. Is there a care manager in post?
I can understand you wanting him home but be aware it will be a fight to get adequate support for this to work. Also, although he has never got angry with you, there is more is a chance of this happening when you are both spending a lot of time together.
If he has been allocated 3 hours support a day, in theory that should be transferred to home. However, the care plan probably says what the three hours are for eg meal prep (I know they arenāt doing this), help accessing the community etc, laundry etc. You will either need to get that changed to reflect the sort of support you envisage happening or you will have to use the plan as itās been used eg get them to help him with making his lunch at home etc and this is the important bit - you need to say what you arenāt prepared to do. Unless you say there are things you wonāt do - they will likely cut his support as you are providing all the support he needs.
A compromise might be as @bowlingbun and @StarFish_1502 have suggested and keep his supported placement open. Work with staff re an activity and meal plan and have him home too.
Having been in hospital all that time he must be very institutionalised and currently incapable of planning his day or even knowing what an ordinary way of life looks like.
The care workers are incapable of this too, due to lack of experience/ training/ willingness etc so unable to organise a structured day for him.
He sounds like a lovely man, I hope things work out for him this time. Please let us know how you both get on.
Thank you
He has treatment resistant schizophrenic and Iām sure he has ADHD and autism as the social worker told me that two years ago when he was transferred to Addenbrook hospital A&E after restraint at a psychiatric hospital and withdrawing clozeril medication.
He was hitting everyone except me and his sister .
But he was also suffering with PTSD after being restrained and suffering with mutism since he relapsed in the previous support living .
It was also mentioned from
a consultant where he is now at the hospital but they never put into writing .
This could be they are sweeping this under the carpet because 27 years in hospital not one consultant or psychiatrist picked this up .
As a mother I see that he has adhd autism traits now on a new medication .
He was so over medicated on clozeril it was masked .
As you know support living is for more able residents and Iām so worried this will go horribly wrong and there will be a treatment order in place meaning soon as he stops his meds he will go straight back into hospital .
I think I met the care manager on the day I visited the care home.
They have never invited me back I have no idea what the staff are like . What it looks like now its refurbished.
Not seen any contracts no contact numbers just an email from one member of staff who tells me when he will be collecting Adam for overnight stays.
I was fuming last week when they arranged for my son to go in Boxing Day .
I soon sorted that out and told them no itās Boxing Day and Adam is coming home with me today this was already arranged with the clinical manager at the hospital .
I have put in a complaint about that .
Elysium healthcare took over cornerstone house in Elstree almost two years ago .
Itās become like a prison putting more restrictions and security in place .
So thatās what the 3 hrs is then ,they did not describe that to me on day of visting the new placement .
The social worker was with me when visting and kept rushing me to agree if I liked this for my son . I told her I have to think about it Iām not sure .
If he was at home I would cook for him and teach him.
The previous support living only lasted 3/4 weeks no one helped him cook all he did was eat junk and unfortunately started smoking cigarettes.
When returned to hospital where he is now they encouraged him to use vapes which is now 15 vapes per week Ā£60 out of his benefit .
Itās disgusting he is so addicted to vapes now .
Itās likely then, that assisting with medication is also part of the care plan.
@Ula ās daughter has her medication via depot injections. Would this be an option for him?
Pick your battles carefully or you will burnout quickly. My biggest stress is fighting with Sās ācareā provider. He lives at home and goes to his college day service. In my heart of hearts I know he needs to move out to his own place with 24/7 support, before Iām too old and worn out to fight and make it as good for him as I can.
Apparently my son canāt take depot injections because he was falsely restrained and in shock and falsed with a injection he refuses any type of injections for the last 2 years
Burnt out I have been through immense stress the last 3 years I was accused 4 weeks ago of causing a bruise to my sons face when I returned him to hospital one Sunday
There was no bruise whatsoever .
The police were involved two days later on his birthday and they refused me to take him out for his birthday . I paid out x 2 cinema tickets that day Ā£50 .
They said a social worker for safeguarding escalated to Hertfordshire trust I am not allowed to take my son out anymore until itās investigated .
The police were at the car park when I arrived to take my son out for a whole day and told me I must leave the car park not just seat in my car .
Surely I can report the police treating me like this I had not been arrested and there was never a crime number the police officer told me later .
He did tell me the hospital social worker wanted someone arrested for common assault on my son .
How can they say this there were no evidence.
I cried uncontrollably and my son was calling me 30 times that day on my mobile asking why canāt I go out for my birthday .
They have neglected my sons dental health for ten years as he is in pain with his teeth the police officer who kept in contact with me said he has looked at the cctv at McDonaldās and Costa and no evidence of him coming to any harm.
He also said there was no bruise on your sonās face when I met him.
He had a little swelling on his right side probably due to his gums he told me.
I also told the police I was outside the dentist hiding in my car because I knew the staff from hospital was due to take my son to the dentist .
I waited and waited and no support worker and no Adam.
I went into the dentist and she told me that the hospital have made 4 appointments to have my son seen by a dentist since October and not once have they bought him in .
The dentist have reported the hospital to CQC.
The police officer told me I must do the same and he is sure they have blamed me for his swelling on his face because they have neglected my sonās dental health and that I reported them to CQC back in July this year .
I opened my mouth and told that awful social worker at Barnet lane clinic in Elstree that I will report you to CQC again which I did in July .
She was angry with me and said what do you mean you reported the hospital to CQC I replied not allowed to say anything .
That was a day before my sons birthday 27.11 she did not mention one word he will not be allowed hime for his birthday just she told me he had a bruise on his face and took photos thatās all she said .
The case is now closed this was on Christmas Eve.
I was desperate to have my son home by Christmas morning .
I even called the police headquarters in Welwyn garden city to get this case closed literally on Christmas Eve .
They emailed the police officer involved and he did contact me apologising the delay in closing the case which he will do now by contacting the hospital.
I had to rush out and buy Christmas food an hour before closing .
This is the stress I have been put through .
I love my son to pieces and would never let anyone harm him.
With regard to the 3 hours a day, it might be 3 hours one to one support working on the assumption that the home is already staffed 24/7? My sonās care plan was written like that once, although as no one else lived there, there were no other staff!
Your son should definitely have a detailed care plan, and also
a Support Needs Analysis, which turns needs into hours of care.
Also you should see the contract between the social work team and the home.
Be very persistent!
I just heard from his social worker his support is now reduced to 1 .5 hrs per day
No way I will let him live there
This is not going to work
All about money !!
He needs 3 hrs even thatās not enough after 27 years in hospital .
She clearly told me 3 hrs per day when I visited the new place with her .
She kept asking me are you happy I said no I have to think about it she kept saying she needs to now soon as it will be given to another person .
Thank you mi have emailed the social worker asking to see the providers contract she just replied she will get this itās only a standard nhs contract
Is this right
Itās the the providers contract who owns the home nhs do the funding by the way .
I wonder what a āstandard contractā looks like?!
From my own experience the average social worker has had zero hours learning contract law or any finance training. I did both a degree level, which worries them. Many homes/agencies Iāve met are of the opinion that they can do whatever they want, take the money whether or not theyāve provided it!
Unless his needs have reduced over night (which obviously they havenāt) they canāt cut his support hours. Any change of support hours up or down has to be done via a new assessment.
@bowlingbun has a point - are these hours 1:1 on top of the general support at the supported living place?
It sounds like the hospital got worse since the change in provider.
Hello
Thank you
The social worker placement officer says itās 1.5 hrs for total support I am wondering if this is when they take him out .
I have heard from her since I told her why you changed from 3 hrs to half that time.
I will talk to my sonās care co ordinator before Adam is moved out of hospital .
No advocate I know that because I called Powers few weeks ago .
He use to have one but he does not talk to people he is not comfortable with . Then they stopped visiting him.
The only person he really talks to and sometimes non stop is me his mother .
Iām
100% he has autism as well .
@debbielorraine
Hello
I hope you and your son are okay today,
I am impressed by your determination and love for your son,
I recognise the impossible experience you have had fighting for your sons life and wellbeing,
Our life has been similar for ten years of caring for our daughter
ASC, dyslexic schizophrenia,
Many hospital admissions.
So little help.
We find when daughter with us no support from services,
This leads to us all becoming unable to cope,
Your doing amazingly there are no easy answers to these dilemma s the services our adult children need are so often just not in existence.
Sometimes we write to ur MP to help.
Take care of yourself warmly Ula
