A need to offload!

[TPrider]

I hope you do not mind. I am not seeking help or advice, I just need others who may empathise might make better readers.

My daughter has her own tenancy but needs constant care.

I took on direct payments for the care of my 30 something disabled daughter last July. A care provider was appointed to do 24/7 care 1/1 including waking nights.

By the end of August I became suspicious that they were not doing the waking nights. I tried raising it with the provider and they assured me that, of course, they were doing waking nights. However, there was bedding left at her flat and personal items, the sort one might use when sleeping.

As time went on the relationship worsened between me and the provider. To make it worse, I was getting zero support from the care management team (social services).

Every question I asked the provider was then forwarded as 'harassment' to social services. They wouldn't talk to me but they were intent on making me out as the villain! Bearing in mind, it is me paying their invoices!

In the autumn I issued a safeguarding notice to social care stating that it was my belief from all the evidence I have seen, including daily record notes, that the provider were not providing waking nights and this was putting her at risk. Nothing happened.

In December I had a meeting with three high level people in social care. During that meeting they apologised for having done nothing about the safeguarding notice and that they would deal with it. They also agreed to a mediation meeting that I suggested and to investigate the provider.

It all went quiet again. I had already followed the internal complaints process and as of now, an investigation is current with the ombudsman.

I said to social care that we needed to change the providers as I knew for certain they were placing her at risk and I was told I wasn't allowed to make that decision on my own, it required the input of them. I still do not feel with direct payments that it did but look, I get at most an hour of energy a day, I wasn't fighting a no win battle with them.

Eventually, my daughter was allocated a social worker. We agreed that looking at the evidence which they now accepted was substantial, my daughter was at risk and I made it clear it was they who now needed to find and engage a new provider as I was done with direct payments due to the lack of support. They agreed.

A week later the provider wrote to me and seemingly everyone in social service given 28 days notice of them quitting! Their reason was the unreasonable expectation that they would provide waking nights and, were we to decide that actually, my daughter could manage with sleeping nights, they would love to remain engaged! Thus confirming what I had been saying the entire time!

So, a couple days shy of those 28 days and we're stuck. I had to interview two providers (why me?) and then move them on to my daughter if suitable. I narrowed it down to only one worth introducing to my daughter which we did on Saturday.

Of course, the social worker doesn't work weekends so I need to wait until tomorrow (Monday) to hopefully have her instruct the new provider ready to get going on Tuesday at 5pm when the rubbish ones stop.

It is totally not good enough. Effectively what has happened is that social services have allowed her safety to be compromised for months, months during which time we could have chosen someone else and done a lovely transition but no, now it's all rushed and because the social worker doesn't work Fridays, I was left to do the job for her!

You know, I have barely scratched the surface of how bad this has got but I have given you enough to get the point.

Yes, I contacted the CQC and they instructed social services to investigated. They declined because it was direct payments! So, that fell flat. I do not expect the ombudsman to come back with any action worth worrying about, it's all too late now anyway!

Last week, at my request, a community learning disabilities nurse visited my daughter as I queried depression and anxiety. First thing she said to my daughter was that she was there as the social worker had asked her to visit! FFS!!!

Seemingly she referred my daughter to a consultant psychiatrist but must have missed out the inability hold a phone call as she was given a telephone consultation for May!

About me, I have ME which is really debilitating. As said, I get an hour or so of useable energy each day unless I pretend I have more and push myself. If I do that, all sort of other things go wrong to the point where I am having to keep going to bed as I cannot function, I am also in a lot more pain like that. That good hour for me is like most peoples 2am feeling, mostly I feel like I've jetlag and it's now 4am. The past few weeks one of my hearing aids has been dead, the one I have left was never programmed right for speech so I've totally had to manage on lip reading.

Honestly, I just need this to be sorted, to be over so I can start pacing my life again into manageable chunks, so I don't feel awful all of the time.

Thanks for reading. I feel what I have written will ring true for many of you and, sadly, it's typical of England in 2023

[BenjiB]

I think supported living is such a cop out for social services. My sister in law has had similar problems with my nephew. They push it on to parents when it’s not really suitable because it’s cheaper and easier. That’s why we chose residential care for our son .

it’s totally unacceptable. I’m sorry I don’t have any advice but i didn’t want to read and run. Hopefully someone else will be able to offer advice. Have you spoken to Mencap? They have a help line.

[TPrider in reply to BenjiB]

My eldest is in a care home but one with a difference. They are each individual flats but, they share carers across the flats. It works really well with the only worry being management and ownership. If they sell the company or management changes, we have issues but, thankfully, his team, those who actually work with him, are fantastic.

Our compromise for that was that he's the other end of the county 45 minutes drive away.

Sadly, when he first left home and my direct care (on my own), the place he went was not so good. I discovered considerable abuse going on. He was drugged to keep him calm and left alone for hours without checks. I used to do unannounced visits and would often find him in the common room laying on the floor in his own urine clearly having had a seizure. Took 3 weeks to get him out of there.

Our loved ones being cared for should be safe and secure, all too often it just isn't. I am convinced it is the stress of caring for so long which made me susceptible to the illness I eventually got and, of course, I'd do it all again because they're my kids,

I have two healthier kids who I know will take over from me when the time is right. Sadly, their mother was never interested in kids once she had them, she only liked babies hence my raising them alone.

[Bluewatersixtysix in reply to TPrider]

I am so sorry to hear about your experience with your daughter. I am empathise with you too, and had a similar experience, where I had to do everything myself, instead of social services, this is exactly why we need an adult's disability commissisoner for England!!! as ,mentioned in my post and petition. Please do not give up, you are doing a great job, look after yourself too

[Tracidu]

I am so sorry to read your post , it makes me so angry that authorities do not take your concerns seriously in the beginning as it turns out the agency wasnt providing waking night after all as you suspected . Its very worrying as to what will happen when we are unable to keep an eye on what is happening to our children or we are not around anymore . I watch the news and various media talk shows , I never hear anyone mention learning disabled people unless something drastic happens and then it quickly forgotten .about .

I hope you find the strength some how to fight for your daughter , I know it must be incredibly difficult for you , I also have a lot of pain and care for my adult son on my own. Your story makes me feel very worried about his future as I have frequently read of similar stories to yours .

I know Im not much help but I understand that a little empathy can help . Take care

[Sugar59]

I'm so sorry about what you're going through. Sadly it's all too typical of Social Services generally - not enough resources or leadership.

I'm trusting that you'll do your daughter proud and then be in a better position to take good care of you.

All the best.

[TPrider]

The care agency I chose bowed out today. Their competition was awful and the third option has so far not contacted me at all. We have 28 hours until her care abruptly ends!

[MontyCat]

Like the other readers who have posted here, I am so terribly sorry (and angered) about the situation you and your daughter have been placed in, through no fault of your own. It is absolutely disgusting that social services and so-called care companies can absolve themselves so casually of any responsibility towards the care and safeguarding of our vulnerable children, yet all too often this is precisely what happens. We had similar, but not such extreme, issues a few years ago with my (now) 28-year-old daughter in supported living because of failures by care companies and social services, so I truly empathise with your situation and fully understand how exhausting it is to have to fight the authorities all the time just to try and secure the basic rights for our loved ones. Do you have anyone who can support you in this regard, either family/friends or a representative from MENCAP or another organisation? It might help to have someone with you so you don't feel so alone in your battle. I'm sorry that I can't offer any specific advice, other than maybe appealing on behalf of your daughter through your local councillor or the press (it can be astonishing how quickly services can be implemented in a "name and shame" situation). I really hope you manage to get something in place - I cannot imagine how helpless and desperate you must be feeling. As parents all we can do is try to stay strong, against all the odds, and continue to fight for our children who cannot do so for themselves. I wish you every success.

[TPrider in reply to MontyCat]

Update for all of you. I couldn't work out why the chosen agency opted out so I contacted them. No one else did so it was left to me. Apparently they didn't! It was a miscommunication. They had actually said that the team from the post code area couldn't do but, that was all. They said they did explain that they were still interested to the part of social services which mattered. So, I got back in touch with social services and informed them of their mistake and all is now sorted ready to go at 5pm tomorrow!

Of course, had I not contacted them then there would be no provision tomorrow. The other provider never did contact me and tomorrow would have been too late so, Dad saves the day again and I can only say how pleased I am that my council tax money is being spent on ... hay, hang on, why am I doing this again when they're paid to do it? Ah yes, because I give a ****!

[MontyCat]

Well, thank goodness you will have care in place for your daughter from 5pm tomorrow - that must be a huge relief. Sadly I am not surprised that social services did not understand the information the company sent, neither am I surprised that they did nothing to ameliorate what was potentially a serious safeguarding matter, or support you in any way during this whole horrendous episode. It does make you wonder what we pay our taxes for.......and why unpaid carers (even if they are parents, and/or receive the pittance they call carers allowance) receive so little acknowledgement when we save the country's economy millions every year. Well done - I hope things will improve now for your daughter.

[Tracidu in reply to MontyCat]

Parents who recieve the state pension but are still careing 24/7 are not entitled to carers allowance . They are saving the government millions as residential care costs thousands of pounds a week . No one really cares about carers or thier views . We never stop . Im so glad you have care for your daughter now and that the situation you were in doesnt happen again . Best wishes too you both .

[sl20]

Hi I am afraid I having nothing useful to add to your post but to say how sorry I am that you have been put in this awful situation. We do the best for our disabled family members often in very difficult situations. I think the whole care sector needs changing as it is not fit for purpose. You sound like a wonderful dad. Don’t forget to look after yourself too.

[flaounes4T]

So sorry to read of the difficulties you have . No advice i'me afraid, but POTS of sympathy I agree with your opinion fully, As a 84 yr old Mum with age 52 son ,ASC/ LD, but Visibly 'capable' he will end up alone when I go. Scary, but No help in sight. We do need to Shout , Loudly, even when we are alleged as Silly. There seem to be No professional bodies to give support. Try to keep well and be determined. flaounes4T

[TPrider in reply to flaounes4T]

Aww, bless you! My fear has always been once they got to adulthood and them being left to get on with it. Thankfully my disabled kids have an able brother and sister so I am sure they will do OK when I am no longer able.

Sadly, many of my troubles have been my gender, a female dominated world of mums doesn't much comprehend a man in the role.

I still get asked 'what does her mother think?' despite mother having not been parenting in 23+ years and, actually not doing it before then either, she just lived with them!

Late last year I had a letter addressed to 'mrs'. It's just the default and annoying

[flaounes4T]

Difficult , I can see. I was mum & dad between my sons 2nd & 10th years after divorce. teaching 'good behaviour' and 'fun' Its hard doing both, but Glad to hear you have other family for support in Future---- Try to smile, and think Positive----it's the only way. Good luck. flaounes 4T

[LearningLot]

I hope you get somewhere with your complaints process because this is completely unacceptable. Make sure your MP is aware of what has gone on too.

[TPrider in reply to LearningLot]

I have not found our MP to be useful in any way. He doesn't even live in our county so, his interest level extends mostly to something where a camera is involved.

[TPrider]

Project Care projectcare.co.uk/ who were the previous carers will likely get away with what they did.

They refused to apologise. They still say that the difference to waking and sleeping nights is one of interpretation.

I got lied to so many times it is beyond belief. I was paying them and yet, they refused to talk about anything they didn't feel we would agree on, such as waking nights.

When they finally realised they couldn't hide it any longer they landed my daughter in a mess with just 28 days to change provider. They were asked but never provided any transitioning provision. Thankfully, one of their better carers came over with my daughter and was able to transition even if just a little.

One of their most recent claims was that they never made any profit when they moved onto waking nights, it all went to their staff. Am I to presume that the staff got the entire £18.90 an hour as a salary? That is the sort of thing I had to put up with.

As for the final invoice, it took three attempts to get it right and not overcharge. On the first one they tried to invoice until 02/04 when they stopped providing the service on 28/03! Even the last one they claimed they'd tucked in a good will gesture! I don't want good will gestures or any form of discounting, just the right amount and, to be honest, the last one looked very close to right.

Everything I have written I do have the evidence to back up. I would strongly advise anyone thinking of using them ask the right questions and never assume that something which seems obvious will be obvious to them.