New and frustrated with poor services

[Diane_1605123]

Well, I am not actually new. I joined about 2 years ago but have not posted for a long time.

I have a severely disabled daughter who is a full time wheelchair user, a mild learning disability and she needs help with everything from feeding to toiletting.
She goes to activities 3 days a week and her carers are very good. They are kind and my daughter enjoys being with them but my frustrations come from the respite service.
It is just a little thing but to me speaks volumes about how the service is run and lack of courtesy from staff.
The door to the respite unit is heavy. When I take my daughter there I negotiate this heavy door, pushing the wheelchair in, wedging it against the door so that I can drag through her little suitcase and a portable stand for transfers. The staff seldom assist me and the same when I collect her. They see me struggle but just hold the door for me but not actually help by bringing the case or the stand.
In fact on the last occasion I collected they told me that it is hard work pushing her around so can she have a power pack on her chair or bring in her powered chair!
Yes it is hard work I know I do it all the time but they can walk out after 8 hours I can't.
Don't even get me started on the, not one, but two occasions when they sent her soiled pyjamas home in a bag with the offending solid still in there, they hadn't even flushed it down the loo!

I need this service so badly but is it really so hard to do the basic things? If you work as a carer surely pushing a wheelchair around is part of your job. Putting faecal matter down the loo and not sending it home in a plastic bag is what anyone would do. Do others have problems with their services? I find it hard to appear grateful for a service that could be so much better.

[Edwina_1804]

Hi Diane

I feel your frustration with Services. I was saying tonight to my other half how the policies and processes in this country have stopped us being humane! Nobody truly understands the situation you are in as to them it's health and safety, risk assessments and what is written down on a piece of paper to if they do it or not, just another number.

I'm recently caring for my mum who has a chronic lung condition. Similar situation to you, she attends pulmonary rehab - can barely walk. The centre she has to go to has a heavy door and god forbid if I wasn't there to help my mum through it because I think she'd just be left out in the cold. I get the impression, the ladies on reception are more concerned about keeping the heat in and how cold they get with the draft than the struggle.

I wish I was able to offer you a solution to your problem but other than suggest to speak with the management or bring it up in a review (which I'm sure you have already considered) it's easier said than done. I hope you find a way to resolve the problem and wish you and your daughter all the best. Carry on doing what you're doing - your daughter is very lucky!

[Diane_1605123]

Thanks for your reply Edwina.

It is the little things isn't it?
When I am out shopping I don't think twice about holding a door open for a complete stranger, like lots of people so surely for someone that you know, that is in your care, who is a vulnerable person for those reasons alone you afford them more care?
Increasingly I find myself at odds with those who are supposed to be supporting me but just end up causing me more stress.
Being asked endless questions for a care plan only to find that the staff don't follow it or don't brief agency staff that are unfamiliar with the individual. I have complained on several occasions. The person that deals with complaints is very sensitive and understanding but apart from a letter saying how sorry they are that I had cause to complain and that they strive to continue to improve services nothing changes.
Oh if I ruled the world........!

[jenny lucas]

Diane - I suspect the Bad Fairy of Elven Safety is behind this!

There will be some kind of stupid guidelines that forbid staff to assist, in case they do more damage inadvertently and you sue them blah blah blah. Ditto with the faecal deposit, lest they contract some deadly disease and then the staff sue!

[Karen_1612123]

I am caring for my elderly mum who has some behaviour issues but no diagnosis of dementia or mental ill health. I cannot get any access to services without a diagnosis and even when her behaviour is extreme and a risk to her health I am struggling to get support. I am not a registered carer
and don't know how to do this, I work part time, any advice would be welcome. Thanks

[bowlingbun]

It's not the diagnosis that matters, it's what someone NEEDS.
So has mum had a Needs Assessment, and you a Carers Assessment from Social Services?
You don't have to "register" to be a carer, you are a carer if caring is having an impact on your life.
Is mum receiving Attendance Allowance?

[Karen_1612123]

Hi thanks for your reply, I have asked social services but they say they won't help without a diagnosis and the GP won't refer as he says mum has capacity, I keep going round and round. I don't want any benefits I just want support and am getting nowhere. I think that as long as I keep supporting mum there is no urgency for anyone from services to get involved. Frustrating for me and very stressful .

[jenny lucas]

Karen, what support are you after?

So you want doctors and nurses to see your mum, and apply treatments to physical conditions? Do you want care workers coming in to help her with things like getting up in the morning, showering, making meals, getting her to bed, etc etc?

Other than that, there isn't any 'support' from the SS and NHS anyway! (Other than she goes into a care home to be looked after there)

What's your mum's financial situation? If she has over £23k in savings she will have to pay for her own carers anyway, the SS won't provide them free.

Would your mother agree to have careworkers come in and help look after her, or would she refuse?

Does she only want YOU to provide the care? (Totally common in the elderly, with or without dementia - I booked a careworker to do my MIL's supper for her, and she wouldn't let her in the second time. But nor would she make her own supper either...)

You say her behaviour can be dangerous to herself - that will be the key to getting SS/NHS involved.

The point I'm making is this. If your mum can no longer live independently on her own, let alone if she is a danger to herself, then she NEEDS care. That is indisputable.

BUT, always remember YOU do NOT have to provide that care! Legally none of has ANY 'duty of care' for anyone, including our parents. BUT, while YOU provide the care, no one else will - your mum won't agree to paying anyone to come in, and SS won't provide any.

The key is to step away entirely in order to force their hand - both your mum's, and SS. Both the SS and the NHS are broke, so are only too glad not to provide anything they can get away with not providing.

You HAVE to withdraw your support first - and THEN that will trigger safeguarding issues etc, and force the SS/NHS to step in (which they will do, if it is for safeguarding etc - and not feeding oneself etc is safeguarding!).

As for your mum, what she has to accept - like it or not! - is that the choice is not having either YOU or Careworkers, it is having you AND careworkers OR nothing at all. She does not get 'just you'.

It requires playing hardball on your part - both with your mum (who will kick off!) and SS/NHS who will try and persuade you, nag you, and sometimes even LIE to you that you HAVE to care etc, but in the end it can and must be done.

With me, had my MIL not let me place her in residential care (she wasn't keen!), my only option would have been to have phoned the SS and her GP, and told them that there was a vulnerable 89 year old woman, incapable any more of looking after herself, who had sent away privately booked careworkers, living on her own, and the lady in the flat next doo had a key......and now it was Over To Them.

[bowlingbun]

Complaint to the HQ of Social Services and your MP. There is nothing in the Care Act about having a diagnosis before you get anything. Some people never have a diagnosis of anything!

[Diane_1605123]

Yes Karen, it is needs driven a diagnosis is not needed. Loads of elderly people get help from SS regardless of a diagnosis.
As said before if your Mum is a danger to herself she should not be on her own ,if her behaviour is challenging and she could be a danger to you then you need the help even more.
Don't let them palm you off. Speak to her GP or take her to see GP but make sure you speak to him beforehand about your concerns.