Sound Advice for All : A little like the Post Office... - Mencap

Mencap

8,204 members2,213 posts

Sound Advice for All

veryfrustrated profile image
19 Replies

A little like the Post Office scandal, care providers tell us and make us feel like we are the only one with issues but I know there are hundreds of not thousands of people experiencing the same and worst but there is no collective to unite together!

After clicking on some of the posts in the couple of weeks since I have joined, most people have written about single set queries relating to their current situation. Due to an two and a half year battle with my 30 year old sons current care provider, I feel I have covered most issues and wanted to share some advice. I would absolutely recommend Power of Attorney for your loved one if they have Mental Capacity for Health & Finance both of these were easy to apply for and free from the GOV UK website for a person who has a disability, solicitor wanted £600 to do it so I did it myself for free!

Court of Protection Deputyship is for people that lack Mental Capacity and is more costly and in depth I presume.

With current events, I believe if I did not have POA with the lies and collusion between local authority, care provider, staff and inaction of the five CQC complaints for my sons house, he would now be under the 'control' of the local authority, with all decisions being made for and about him taken out of my hands

My sons care provider were informed of my POA when I sent it to them. The care provider mounted a challenge that I was an unfit parent to have it. They want all tenants to be mute and all families dead, buried or uninterested, it makes their life much easier. Lies and falsehoods fed to the local authority about how I control my sons finances, do not let him spend any money! I welcomed any challenge as I had done nothing wrong and had eight years of spreadsheets to back all his finances and free spending up. I did not realise that what you cannot prove, you just make up and falsify!

When asked if my son could have a Malibu & coke in the pub, I replied, no, he has epilepsy and alcohol is a trigger for seizures. Can he buy a packet of ice creams when shopping, nope, buy just one ice cream as he cannot rest in the house till he has eaten them all in one sitting. Can I buy this picture I like for £130, nope we have just booked your 30th birthday party that you have asked for that will come in around £1000's. Always generally advice, agreed with my son with his agreement and discussion to weigh up the pros & cons after 30 years of knowing him but the new carer that has worked with him for a week, knows and understands his condition better than me and feels his life is being restrictive! God forbid that they are interested in listening to your reasoning and explanation.

Unbeknown to me a local advocate was despatched but she had a little chat to the staff first...first question to my son, are you scared of your mum? His response, of course not, that's bollocks, what sort of a question is that, I love my mum-advocate recorded his answer down as NO. Would you like to sort your own money and spend what you want, when you want? My mum helps me with my money and I am fine with that, advocate recorded his response as my mum would never allow that! They were only two of the major discrepancies.

At the end of the advocacy meeting, what should have happened was that she read his responses back to him to confirm but in fact when he had asked her what she was writing, she replied, Oh nothing, I'm just doodling. After I raised to my sons social worker that no one has ever read his report back to him, she obtained a copy and went through it with him. The conspiracy with care provider, staff and advocate came to light I have raised an official complaint.

In addition my son has a communal money tin between the five house tenants that they all contribute towards equally for cleaning products, loo rolls and all associated other things needed in the home. I have currently suspended payment to be held in a holding account as I have been asking for 2.5 years to have sight of the spreadsheets to see where all the money is going to no avail. I am told it is because of GDPR a curtain that a lot of care providers hide behind. I am not sure why if all gents contribute the same amount monthly where the GDPR comes in for toilet rolls, bread and milk ?!?!

Then.....I am sent an unofficial work WhatsApp group by a member of staff that has left, disenchanted with a company that she has raised safeguarding concerns to that went ignored, that have called her a liar and troublemaker to the point she left the company. Eight months of WhatsApp messages between a Team Leader, House Senior and staff and it was horrific. The level of personal insults, salt in parents tea when we visit, staff being told by a manger, write a report and make it sound terrible. Keep going people, remember parents are irrelevant, we are doing the job that they can't. looking after their loved ones and much worse!!

Any how, I am taking them on, speaking to a public law solicitor Monday, not for compensation, because I cannot get the last six months of my families sanity back to to make them have to stand up and be accountable for their abhorrent apathetic behaviour.

In 2.5 years we have had three safe guarding issues, seizures not recorded on house paperwork, five months to get a risk assessment to go swimming, four staff that have raised issues finished or moved, staff involved in safeguarding issues moved to other house rather than disciplined and sacked and even more horrors.

You may ask, why don't you just move him? One of the staff is marvellous with him, he did have two but they just finished her for raising a concern, with immediate effect! My son lives near his Nana and me and loves the local area and most importantly....to where, everywhere is full!

In eight years of supported living, we have only ever had three great vocational staff, one at his previous house and two more recently, they are few and far between!

Supported living is a cash cow, HMO's and housing associations come under different rules for housing benefit, it is basically a licence to print money, my sons house with five tenants receives £1180 per WEEK in rent from the local authority, £236 each tenant. If I rented next door as a private tenant to move my son in, for a two bedroom house LA would pay £124 per week housing benefit, but they pay my sons care provider £1180 per week for theirs.

If I could do it all again, never pick a care provider that owns the property because if it all goes wrong, you cant just change provider if they own the house but if it is a housing association owned house you could if all tenants in agreement to change.

Life is not great at the moment, too much worry, I need to find a forever home for my son in case I have a heart attack soon which is what they would love, I think.

While I still have a breath in my body I will fight for my son to have the home and life he deserves to have. He is the most amazing person and a joy to be around but I moved him out for independence for him and comfort for me to know he will be looked after when I am no longer here. Little was I to know what a complete shower of s*#t that some companies are allowed to be.

Protect yourself and your families and do a POA or COP Deputyship tonight! It gives you some protection at least for your loved ones.

I am sure there are great providers out there and great staff too, just not where we are at the moment!!!!!!!!! Not sure if this current nightmare will be resolved without an empty bungalow appearing soon with a space on the ground floor!

Written by
veryfrustrated profile image
veryfrustrated
To view profiles and participate in discussions please or .
19 Replies
Jofisher profile image
Jofisher

hi please can we talk please as I’m a deputy for my son and have had five years of hell and it’s ongoing.

veryfrustrated profile image
veryfrustrated in reply to Jofisher

I would love to talk but unfortunately so much if my life is taken up trying to work full time and manage the continuous barrage of lies and information raised against me, I have no energy left to take anything else on board, sanity is waning. I'm so sorry that anyone else feels like I do x

Jofisher profile image
Jofisher in reply to veryfrustrated

I can totally relate with everything you’ve said. Take care of yourself I’m now having mental health support all caused by what we’ve been through especially in the last five years my son is the same age as your son. There’s social subscribers now attached to your g o services there’s time to talk that you can tap into and carers health team one or all of these might be of some interest to you. All the best with your battles it shouldn’t be like this but sadly it is.

LaVerite profile image
LaVerite

And I thought it was just my experience! You are describing exactly what I have been going through. Dealing with narcissistic, manipulative 'professionals' who are past masters at hiding behind the system designed to milk these poor unfortunate victims of their blatant corporate abuse, and whose mindset is not far behind the beguiling Putin.

In my case, as much as I want to make my experience public and name names, my family has been gagged by a Transparency Order by the Court of Protection, and now the 'lid' has been firmly shut, the key thrown away and my relative trapped in this profit centre disguised as a care home.

Why isn't there a body with the resources and teeth to expose thus state of affairs? The reason is because DARVO (no, not Bobby, but look it up) behaviour makes the perpetrator out to bee the victim. Local Authorities, Health Trusts, Doctor's, Dentists, Podiatrists just swallow it up because they too are not interested in our relatives care, but their wages and 28 days holiday.

On the flip side, there are true caring people out there but these are at the bottom of the pecking order, and if they speak out or whistle blow, their life is made hell.

Can't we collectively petition Watchdog or some investigative journalist to expose thus poison and bring about positive change?

HELP!

veryfrustrated profile image
veryfrustrated in reply to LaVerite

I know I am not the only person experiencing this behaviour, no one wants positive change, too much hard work to make staff actually do the job they are paid for! Yes, let's hope a journalist reads this website!

Mybestfriends profile image
Mybestfriends in reply to LaVerite

Absolutely should not be like this!!Life shouldn't be a fight to Care for our loved one's & make other provisions, in their best interest, for when we are nolonger able to be there for them, we can't trust these so called 'care providers' all but a few individuals. The system is corrupt, I feel that us as Lived Experienced Parents, Carer's, Relatives, Need to have an Independent Governing body, overseeing all, CQC are supposed to, but I suspect they will have their own Red tape, they cannot cross, so hide behind the Curtain if pushed for change. Keep fighting 💪 💖

my Son currently living at my house, waiting to win a Bid for independent living property. He's in & out of Crisis, because of past Trauma & inpatient stay, added Trauma, but paperwork says, 'Signed off, Considerably stable & in the Care of Mum' His Psychiatrist is on Annual leave & we have no Lead, as Signed off. They did send a Letter to the local Community Aspergers Team, asking to see my 34yrs old Son, we are still waiting for contact.

I don't think any of these Services, know what they are doing, apart from Money & Holidays!!

LaVerite profile image
LaVerite

It is a shocking and painful place to be squashed into. I guess you can't name names either, but can you say whose local authority your son is 'under'? It rings so true that I'm convinced it's the same as mine!

veryfrustrated profile image
veryfrustrated in reply to LaVerite

It won't be as I believe the issue is national, all I can say is I'm from a popular seaside town xx

LaVerite profile image
LaVerite

Well, that's interesting, so are we 😲🏖️

veryfrustrated profile image
veryfrustrated in reply to LaVerite

With a tower?

LaVerite profile image
LaVerite in reply to veryfrustrated

😄 Yes, but not that tall lol!

Jofisher profile image
Jofisher

just been thinking I’ve had to employ an experienced social worker to help and super me she works for herself now and she’s been amazing. I do pay her with my son’s benefits as it’s all about him and for him if it’s of interest I could give you her number.

Bluey203 profile image
Bluey203

Totally agree with everything said on here.It is definitely a national problem. Parent and sibling carers regularly comment on here about their difficulties with 'care homes', even the 'supported living' is hugely problematic when parents/siblings are no longer here to oversee that their loved ones are looked after and have quality of life.

How many times do we have to see sickening hidden camera footage of verbal and physical abuse, installed by desperate relatives of those most vulnerable unable to speak out.

Yet parents are treated with total derision.

We have a lifetime of knowledge about our loved ones and deserve to be taken seriously.

My son is still at home, the future terrifies me and all others in the same situation. Almost everyone in the country will experience the broken care system at some point in their lives.

It shouldn't be like this, yet nothing changes.

We need a new government controlled body which is there for carers to turn to when in time of need, that will act on their behalf.

A body that the CQC, NHS, social services, and care companies are answerable to.

At the moment they walk all over carers because they can 😔

Watchdog is a segment of the one show now -

bbc.co.uk/send/u23123288?pt...

An investigative journalist Nick Wallis who brought to light the post office scandal may be interested in the problems experienced -

nickwallis.com

Thinking about it, I guess we are all writing on the one collective that could represent and unite all our voices....Mencap, except they apparently no longer do national campaigns but instead 'give support for individuals to campaign in their local area'🙄

They need to get together with Alzheimers Society and the Down's Syndrome Association as they would all have the same problems and experiences with the care system. The Downs Syndrome Association successfully campaigned for the 2022 Downs Syndrome Act, 'supported' by Mencap. Personally I think it should have been 'The Learning Disability Act' .

Marzano profile image
Marzano

Hi, So sorry to hear that you're having such a hard time with it all. I think many of us parents experience the same things despite also having POA.

For us the "small" specialist company where our daughter lived happily in Supported Living for more than 15 years was taken over by a large nationwide care company about 5 years ago. Again the care and the accomodation are linked via 2 companies under the same ownership. The care team in the house are excellent but they are understaffed & the extra niceties of life rely on the staff going above and beyond their normal duties. Head Office are impersonal, almost impossible to contact (even if you manage to find out who to contact) and basically have absolutely no interest in communicating any relevant changes to care with parents. A recent change of tenancies to HMO basis has been presented to the tenants with very little clarification except to say "If you have any questions, consult a solicitor." Needless to say we have (and still are) questioned some of the legalities in the document. It just goes on and on.........

Anyway, it seems to us that the only thing many of these companies are actually interested in is making money - not caring for our loved ones. They can certainly "talk the talk" but NOT "walk the walk".

Take good care of yourself!

49Twister profile image
49Twister

OMG, I could have written this myself. My son has been in supported living for 8 years and it's been the worst 8 years of my life. Lies, lies and more lies, covering their backs all the time, will not admit to anything. I honestly feel as though my son is doomed to an early grave with these people. He is 50 and I am 75. I have just recently applied for POA for both finance and health. Even though he does not have capacity for finance and health he does have capacity to appoint me as his LPA. All the time I was telling them he doesn’t have capacity they took no notice and still even when it's proven nothing changes. The social worker also responsible as they don't endorse the help they need enough. God help those who don't have parents who watch out for them. Love to all of you.

Shedman1 profile image
Shedman1

I’ve posted on here before but want to share my experience of POA ie it does not necessarily give you any power and can leave you very exposed. I have POA for finance and health for my brother but when I asked his supported living home what regular cash withdrawals were being taken for, I ended up receiving a letter from the Office of the Public Guardian saying I was being accused of restricting spending. It has and is an ongoing nightmare and I know from my solicitor that there are numerous cases where family are working in the best interests of their loved ones but are being taken to the court of protection and risk losing POA. I totally understand the reasons for wanting LPA but just understand there are also risks.

Bluey203 profile image
Bluey203

That's terrible, sounds like the supported living home were scared when confronted and wanted to report you to the OPG before you reported them. I wonder if family with POA or Deputyship and concerns such as you had, would be safer to go with their concerns and evidence to the OPG first, before approaching their loved ones supported living or care home, as they obviously are quick to protect themselves 🙄Hope all is sorted for you soon!

Shedman1 profile image
Shedman1 in reply to Bluey203

I did raise my concerns with the OPG before I was reported but their helpline seems to be staffed by very junior staff and simply suggested going to social services if I had concerns and also getting a pre paid bank card to limit spend - which I’m glad I ignored as might have been used in evidence that I was restricting his spend. Incidentally I did raise my concerns with social services who simply told me to stop questioning staff as it made them feel uncomfortable.

veryfrustrated profile image
veryfrustrated

In addition to my original post. I did call the Office of the Public Guardian when I realised the Care Provider was questioning my 'level of control' over my son. I explained the situation and asked if I could send them the bank statements and spreadsheets I had to prove my sons free spending at that he carries his own bank card to spend as he wishes with guidance and advice from me as his mum. No, I was told, just wait until a challenge is raised and you can prove whatever you need to if it reaches a hearing. It seemed strange to me that a parent that is offering up information to sort before it came to a hearing was ignored.

You may also like...

Fuel bill debt advice

managing his benefit money and his energy provider (Boost) keeps “lending” him money to pay his...

Safeguarding in supported living

Son has been in supported living service for 18 months. I have deputyship for finance and medical....

Advice required -suspected Neglect

leaves on his own with no support. He’s 3 hours drive from us. I am visiting him , but only see...

Threatened by court of protection by social worker.

experience for him. Staff have been late for visits, no communication around this and now lies...

Advice Needed changes in behaviour

new here.. I have a 21 year autistic son who seems to have become agitated at the day care centres...