Dear Friends May I ask your advice; my blind friend in a care home wanted me to be one of her advocates; we left the message on the social worker’s answer machine 3 times but she deleted them; I got a reply today saying I can’t be an advocate; Because my friend was saying things like I want to die, I contacted the crisis team, psychiatrist saying i was concerned; I am so disappointed; social worker’s response below; it;s all wrong. On wedneday when I visit i will record susan saying she wants me as an advocate; I feel like i am being penalised for trying to help my friend; we have asked for an indenpendent advocate and best interests meeting. i was also told i would never be allowed to see her care plan; it feels like I am being treated like a criminal
Good morning,
The meeting at the home would include yourself, the home manager, DH (Sue’s requested advocate) and myself.
The purpose of this meeting is to ensure that there is clear understanding of each ones’ role. Unfortunately, concerns have been raised in relation to your involvement with SY.
I appreciate you may wish to provide SY with support; however, this can continue as a friend. SY is a vulnerable adult, and unfortunately some of the steps taken by yourself have at times, have caused a negative impact on SY. Such as arranging and requesting for a move although, this was not something SY wished nor was appropriate due to her level of needs.
Also, contact with health professionals on behalf of SY. Sy has stated who she wished her advocate to be, therefore her wishes and stance are to be respected. However, as previously stated if you did have concerns, could yourself inform the care home, as it is within your right to raise concerns; as well as safeguarding concerns via Liverpool city Council or CQC.
Hi @susan_170912 I’m not sure that recording her saying anything will be accepted. It’s very clear that an independent advocacy worker is already involved and the boundaries have been set by the local authority. I can’t see a reasonable argument at this point for you to be able to take forward any alternative proposal.
I think your safest bet is to talk to her advocate about any concerns you might have: it’s their job to make sure SY’s voice is heard. I honestly believe that if you try to record SY, or to undermine the advocate, this would give the care home the excuse to ban you from visiting as they can say that you’re a danger to SY. It’s very clear that there are already concerns about the situation from the letter you’ve quoted.
Advocacy is a touchy subject for me. M rings me every night without fail. He chats to me about anything and everything. From buttons on his shirts that need sewing back on, his hedgehog finding it’s way into his shed, where he’d like to go on holiday. He has severe speech and learning difficulties, but as his mum I can understand more than anyone else. If he raises something his care manager needs to know, I ask him “Do you want me to email D?” and then email her straight after the call ends, so I don’t forget. Too often this is then interpreted as what Mum wants, not what M wants”. I wasn’t invited to his last review, he had an advocate he’d never met before, and it was decided he “wasn’t interested in steam engines any more”. Utter twaddle, when we took both engines to the Great Dorset Steam Fair. M and a friend were looking after the roller and they won the prize for the Best Steam Roller at the show, the largest event of it’s type in the world! That meeting wasn’t held at his flat, where the lounge has engine pictures on all the walls, including a poster size copy of the front page of a national magazine showing M driving up a hill another year at the same show, dad steering!!! Some of his support staff are so disinterested that they haven’t noticed it’s M driving until I’ve pointed it out! This year they even managed to take him to Swanage Railway, without telling me or checking what event was on. It was Diesel Day!!! M was so annoyed, but staff didn’t take him back for the Steam Gala the following weekend. Advocates are worse than useless in my area. I would love M to have one that was good to take a lot of pressure off me.
It’s horrible being perceived as an enemy when I’ve always done my very best to ensure M has as near possible the life he would have had if he hadn’t been brain damaged at birth.
His flat is lovely, he has everything he ever needs to do what he likes with carer support, now I have so many health issues I can’t look after him for long.
At his request he has a Kenwood Chef and a Magimix at his flat to make the things he loves, yet staff won’t even make a crumble for him, then they get frustrated going from shop to shop to find some ready made!!
My knowledge of the benefits system means that he has plenty of money, in fact his income is far higher than my own, so if staff were more imaginative his life would be so much better.
Dear Bowlingbun I am so so so sorry to hear this; this cannot be right ; here in Lancashire we have some advocacy groups; I will try one of them to support my friend; have you asked for a best interests meeting or an independent advocate; sending warm wishes and kind thoughts Susan
The phrase “You can lead a horse to water but you can’t make it drink!” comes to mind.
For the last assessment I found out about, I had an advocate, who worked with me to write a very good summary of the situation. However, she was not allowed to attend the review. She had to send her summary to M’s advocate. M’s advocate didn’t turn up at all, she had car troubles, so without any input from my advocate or M’s advocate, it still went ahead, rather than rescheduling it. The meeting was due to start at 2.00. M had asked me to attend (he hadn’t had any of the paperwork about what a review meant, what to think about before the meeting, etc.) in fact he asked me what it was all about? He hates meetings as he needs lots of time to think about his answers, and lots of appropriate support. Otherwise, as my eldest son says, he just agrees to the last thing someone says!!!
Since then I asked for the advocate I’d had earlier that year to support me again, but she’d left. I’ve asked the advocacy service at least 3 times for support since then, only to be told someone’s on leave and will get back to me, then two other requests have been “lost”. In fact the recent Carers Assessment, copied from an ealier one, says I want an advocate at meetings, but not provided!
I should be the easiest person to do an assessment for, I know what should be provided and never EVER ask anyone to do me a favour. I just want M and I to have the support they should provide. I’m not even asking for any more money, just that M gets the support he needs without me being constantly left to fill in the gaps.
Here’s a simple example. I used to wash and dry his duvet at the change of season, I have a large capacity washing machine and a huge conservatory. I used to lay it over 2 clothes airers, turn on two enormous fans, and it would dry in a day. I’m very arthritic and can’t do this any more, so I specifically asked fortaking the duvets to the dry cleaners/laundry be included in M’s Needs Assessment, especially as I’ve had lots of health issues. It hasn’t been done, and in my latest assessment it just talks about “seasonal jobs”. No mention of washing the duvets, or net curtains (which now have holes in them and need to be totally replaced. Guess who will take them up and make them fit? ME of course!)
sorry to hear this Bowlingbun; I have been thinking about our situations this afternoon; it is so so hard; I cannot imagine how hard it is for you to have looked after your son all these years. i really cannot imagine how exhausted you must be at times; it really is all wrong. With my friend Susan, she could have such a different quality of life, if she was allowed to choose her own care home. I have surrendered the situation and will just support her as much as I can from my house with phone calls. I am visiting her next week with a golden retriever for her birthday
Thanks for all your support Bowlingbun; I do hope your son gets a great advocate
Hi @susan_170912 I suspect your friend doesn’t want to make a fuss and is telling the social worker she wants to stay where she is.
Unfortunately, I think the only way this will progress is if your friend has an advocate who is made aware of all the issues and who your friend builds up trust with so she can say what she really feels and wants. The quality of advocates varies. It might worth contacting SENSE as they understand the specific needs of someone who is blind and has more complex needs.