CHC Funding - Direct Payments

[nita]

My mother has had funding for over a year now. She is bedbound, incontinent, probably in the late stages of Alzheimer's (although she can still converse sensibly at times and is able to answer questions, so does not fit conveniently into any category) with severe arthritis and chronic pain - which she has suffered from for 15 years, 9 of them pre-dementia - but which has been exacerbated by her dementia symptoms making her care problematic. I live with her and look after her, apart from her personal care.

I won't go into too much detail but suffice to say I am not happy with the care she is receiving from an agency. I am afraid I have been inactive about changing the situation due to a "better the devil" you know instinct.

I now feel I ought to do something about it, although not sure I can lessen my mother's distress at being moved and attended to. She needs careful, gentle treatment which I realise is hard to give under the circumstances, and some discomfort is unavoidable on moving. Have others experienced upsetting distress for their (immobile) relatives when personal care is being delivered? I am sure this is often the case. I find I am unable to judge whether my mother is receiving appropriate treatment although I have found a few of the carers are much better at handling her than others.

I have had numerous other problems, one being the timing of the visits is not always convenient nor suitably spaced for my mother's needs. I did originally request specific times but they seem to have slipped and now are very erratic, to say the least.

My mother needs a double carer visit four times a day. It seems that agency carers will not work with me as I am not an employee of the company - some sort of legal/health and safety issues. Also, I am unsure if I can take on the role of carer, being untrained though I have had to assist at times and also change and turn Mum myself. I find this a little difficult as she cannot move herself at all. This would mean employing two carers or more to substitute.

I am now considering the direct payment route if the NHS will agree to this. If I change, does this involve a long process of the assessor coming out to re-assess Mum and going into the reasons for my wanting to change? I don't want to be involved in some sort of dialogue with the care agency and possibly prolonging the situation. Will it be complicated and take time, in short?

Can anyone help me with this situation, having been through a similar experience?

I believe we have a local agency that can help with the financial aspects of employing carers which I would use as I think this might be too onerous a job for me.

I apologise Stanleypj - I see you have had a similar experience but I have not followed all of your thread. If you could give me some pointers, I would be grateful.

 

[Chaucer 1931]

Hello Nita, I can say my past situation with my late mother,was almost identical to yours,the last few months of her life and the problem of having care agency not enough staff to do 'double ups' and unwilling to let me assist just one carer as you wanted to do with your mother,as it all comes down to insurance and health and safety and basically covering the agency's back in case of a liability..

I was told 2 weeks before my mum passed away (late January)that she had been awarded CHC (the week before Christmas apparently)..
The care agency I had been using weren't able to provide two carers at the times that my mum would actually benefit from the visits..
In the end I just carried on as normal caring for my mum,I must say her/our GP was brilliant and got the community Nhs end of life care team in to help mum the last week of her life.. I would say to you to ask her care co ordinator and GP to see if your local team can be of help,they made sure mum was given adequate pain relief( oromorph) and then the final weeks a syringe driver and a airflow bed (she was only in it for the last three days of her life),arranged by district nurses and a OT..
I'm sure you may get some level of help or suggestions through going through the gp..
My intention and mums wish was to be cared for at home,which I did single handedly and the promise I made to her I kept,but it has cost me my health and mental health,as I coped on my own for some years without any sort of help or input..
I would think careful about the direct NHS care arrangements,if you can arrange wages,pensions and red tape for hiring an independent person to assist you,then I would say do it,
I'm sure there are more experienced carers/loved ones of PWD on here,who could give you more advice and input than I have,I just wanted to reply to you having been through similar difficulties with arranging help for my mum on my own..
I apologise for rambling,but I do understand and I hope you and your mums care package can be sorted without much more stress.
Thinking of you both. It is hard...
X

 

[nita]

Thank you, Chaucer. My Mum has had a hospital bed and Piezo airflow mattress since 2013. She has Fentanyl patches, pregabalin and oramorph for her pain; has been bedbound for nearly 3 years. She has got to the stage where she doesn't move her limbs, only her hands a little. I am not sure if this is due to the course of dementia, her arthritis or being immobile and her muscles wasting.

I wouldn't be able to move her alone; not being able to assist in turning herself to have a pad change, she is a "dead weight" even though only about 9 stone. Even doing it with one other person and the aid of a slide sheet, it is very hard and can strain your back.

I am just concerned that she seems to be in so much distress when being moved and seen to, I am not sure whether there is any better way of handling her. She has pain when touched but it is unavoidable at these times. I know she is less upset when I assist sometimes, maybe just because she knows my voice. It is awful because she calls out for me or for her "Mummy".

I hoped others with persons in such a position could enlighten me as to whether this level of distress is acceptable. I realise that her dementia is part of the problem, it's not physical pain alone but also not understanding what is being done to her and the reason.

 

[Chaucer 1931]

It might be worth speaking to the GP about reviewing the pain relief,my mum had hers increased as I mentioned her discomfort when being moved,she had been bed bound for about a year and suffered with osteo arthritis-and yes you're quite right to want the best way of handling your mum with minimum discomfort,as it impossible to move just on your own..you know your mum best.. A slight groan from my mum,when I or the carers moved her had us ringing the doctor and upping her pain meds.. I'm sorry to be vague,hope you get some comfort soon for your mum,just do what you think is right. X

 

[Sue J]

Hi Nita

Sorry to read of the distress your Mum is experiencing when given personal care. DO the carers talk to her during it or do they just get on and do it? I suspect her vision is quite poor and if they don't talk to her reassuringly all the way through it is probably quite frightening for her. The fact that she is better with your involvement sounds like she needs a familiar voice and reassurance.

Love
Sue

 

[arielsmelody]

My MIL has recently moved from LA (not NHS) funding to direct payments. The actual process of changing to direct payments was relatively simple - we discussed the change with the social worker at the LA and she made the change, in principle it was as simple as that. She has been reassessed by the care agency but that was because the LA had changed the care plan. The LA put us in touch with a charity who help people deal with direct payments, and that charity put us in touch with a payroll company because we were employing a personal assistant - if it had been done via an agency we could have just paid their invoices and not worried about payroll.

The LA has set up a bank account for the direct payments, and my OH can access it online and has a bank card to pay bills. The main problem we have had is that the social worker was incredibly slow to put things in motion so it took weeks (about 6 weeks) to actually set up the direct payments bank account and there was confusion over the start date of the arrangement which has left the account short of money although we are promised that it will be refunded eventually. (I'd recommend starting at the beginning of a month to minimise confusion.)

It has all been more stressful and more complicated than we'd anticipated, partly because the arrangements we wanted to make are slightly unusual. I wouldn't take it on unless you are happy dealing with the admin side of things and keeping track of invoices etc.

 

[stanleypj]

Hi nita, I can certainly empathise with your views on the agency. I went through a stage of putting up with unacceptable things because I wondered if there was a clearly better alternative.

Our situation changed for the better when I bit the bullet and told them not to come back. I'd already started to employ our 'own' excellent carer/PA for 'extra' hours to supplement the agency and she, and family members, helped to fill the gaps. But it was only when we got CHC funding that was back-dated a few weeks that we really got a comprehensive enough package in place and we still had to use staff from a better agency the District Nurse had mentioned until after some months we got a second carer/PA who was also very good.

As your mum is already CHC funded I would say you should not have to put up with 'care' you're not happy with. Has a personal budget been mentioned at all? It seems pretty common now and it would ultimately give you more freedom of choice though there might be a period of uncertainty until you recruit the good staff you're looking for. Please contact me by posting or PMing if you have any questions I might be able to answer.

I expect you've seen the 'sticky' CHS thread.