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Fibromyalgia Action UK
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Problem with Care Company

My elderly Mum 94 has carers 3xs a day and they used to write in a records book all the details of each visit. Any health visitor could look up Mum's health on their visits and I kept a close watch on Mum and knew if she was well enough for a walk on my visit. Now the care company has gone digital and the carers have to input the details into an app which has security on it. This was 6 weeks ago and I still don't have access to her details. I was told it would be given after her care review which was weeks ago and now they want to set up a direct debit as they want payment of £10 per month for access. This would only be for myself and my brother, not for any health visitor or dr. I am in the UK. Is this correct? Surely we should have access to her records without paying for them.

Also, the carers used to get travel time between each client but now that has been taken away the carers are always arriving 10 mins late and leaving before the hour is up. This adds up each day. Is this right? We have complained about it and the carers are rushing around trying to get away early, this doesn't seem right either, just out to cut corners with everything.

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I am a full time carer but not in the UK anymore.

Does your Mum have anything paid from Social Works for her care? Have they assessed her needs?

If you have signed a contract with the agency/Social Works check exactly what it says. If it has changed without your approval then you must take this up with them.

x

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Social pay half for the care and have assessed her needs. She has had care for a couple of years now but 10 months with this company.

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Sounds like they can't meet her needs so contracted out. Nothing new there although I always fought against it for my husband.

I have just emailed a friend who works with Carers UK. She will know more.

x

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Sorry I personally can’t help as no experience of this, however my suggestion would be either making an appointment with Citizens Advice Bureau for advice and your rights etc. Also, ringing Carers UK or similar charity might be able to help you :) All the best Emma :)

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It may be due to the new confidentially rules that came in last year paper records can get read by others if left around .

Some care company's allow travel time between visits and some are included in visit times .

Not a lot of help to you or your Mum I'm afraid .

I would speak to Social Worker about your concerns as you should know if Carers have been and what thay have done for Mum.

Does Mum have any other expenses that she pays due to her disability for instance does she pay for a cleaner, shopper, rent equipment like Personal Alarm encase of falls ,Pay for Taxies on a regular basis if so did you know you can claim for these which would bring her contribution of care down .

Just need to request Disability Expenditure for from your Council

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You’re right GDPR might have been involved here too

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Thanks

Its a minefield when people do not know what thay are able to claim for

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This doesn't apply in Scotland though.

x

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The council took my care allowance away to put towards Mum's care and Mum pays a certain amount, although I still visit 4xs a week and use up petrol etc. I try and take her for a walk which the carers won't do owing to safety issues! She has a walker and the pavement is flat. So I don't get anything for keeping her strong and fairly active. I have to look after her house and garden and sort out problems.

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Hi

Its not a Carers allowance have a look at Bananas5 post she has posted a link to it which does explain

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We get care through a care company not the council but my Mum pays towards it. This is the third care company as the others were hopeless, couldn't even work the stairlift and the carers were climbing over it!! I would have thought basic care training would have covered that! Mum has cameras around the house so I can keep an eye on her and it is astounding what the carers do even though they are told there are cameras and they are on display. She also has dementia sadly.

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You must go back to Social Works and tell them all this.

It is appalling. They have a duty of care to older people and this clearly is not being provided.

x

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Hi there my mom used to have carers in 3x a day u fone up the agency or council and demand copies for the week/or daily.Yes the carers come when they wanted to etc .Mom came home with a cafeteria (wee bag) the morning carer come I asked her to empty bag carer told me that’s not there job they are not trained.The district nurse came I was telling her about the carer the nurse said they are trained and is there job.The evening carer come she told me that it was there job and they are trained to do it...

Also the one carer was putting times and dates incorrectlyI took fotos of there work sheet cut a long story short my friend emailed the agency and council.Two girls were suspended then I was told they ad both been sacked..

Contact the agency by email and council

EMAIL only as it leaves a paper trace which covers yourself (as things cud be lost)

They have to give you the information I was never told I ad to pay and I wouldn’t have done....

U cud also get power of attorney over mom as well.

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So my brother who has POA demanded the records and the owner of the care company now say they have given us 4 weeks notice and the records will be given to us at the end of the notice period! They are the best carers and Mum loves them, they go out of their way to help Mum, she calls them darling.

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Hi, I worked as a community care assistant over 20 years ago and I was always chasing my tail trying to get to everyone on time. My boss was excellent and paid me for travel time. Then she retired and her business was sold to a bigger company who cut out payment for travel time. Even if your mother's carers arrive late, they should stay for an hour as that is what she pays for. I would discuss this with the social worker who should be able to improve your mum's care package. The data protection act that changed this year is probably why the journal has gone digital. £10 month seems a bit cheeky, although the information does belong to your mum and not you and your brother. It would be worthwhile researching what other companies charge, if anything. The social worker will be able to tell you what you can do. If you're not happy with the result you might have to resort to looking for another care company.

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If it is because of GDPR it is so stupid, the only people she has visiting are people concerned with her health and always check the record book. She has dementia so cannot remember much. She lives in her own home. It only has her bowel habits, her daily status, what she has eaten or drunk and any other notes and care plan. No other personal information. Just the family contact phone nos. Rules gone mad!

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I agree with Katy1972, you would benefit from finding a more compassionate company. You would expect home carers to be able to have an arrangement where you can have access to your mum's records if the information is only very brief. Medical information is protected, there must be a way you can get access without paying. Maybe you could have your own diary where you ask carers to document what has happened each day.

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Hello there I truly am sorry to hear about this. Unfortunately care is changing in the Community and it feels incredibly wrong. I used to be a Community carer my humble opinion is to get looking for another care company that treats their staff better and subsequently their clients. There are good companies out there that truly care... Others I'm afraid are greedy and self-serving. I do hope you find a more compassionate company.

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Already used up 3 care companies! After a few falls the family decided to put cameras into most of the rooms. This showed up inadequate care, stupid things the carers did. A horror story, no physical or verbal abuse thankfully. Leaving Mum in full sun in the hot summer causing her to dehydrate. Not changing her nappy. She doesn't like to be a burden on anyone so if they ask her if she would like something to eat or a cup of tea she says she's fine. It is in the care plan to give her food and drink whatever she says. But they weren't bothering, just sitting behind her on their mobile phones. She didn't even know they were there. This is the best company and we have run out of options anyway. Her two normal carers love her and joke and sing with her. We are lucky to have found them.

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I hope everything works out for you and your mum it's very hard and no excuses for hideously poor care. I am glad you have two good carers.

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That's dreadful. I don't understand why people become carers if they can't be bothered to care for people.

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My dad suffers with PSP ( a ghastly degenerative brain disease) and mum has carers in 4x a day and they are rubbish, you get told by some they are not trained to empty catheters some are and they lie about how long they stay, my mum in essence does all the hard work. Theywont even assist her to get him on the stair lift as they won’t care for him upstairs anymore and he HAS to sleep downstairs deemed by the OT but dad didn’t want that he wants to be near mum. Also he gets confused at night and someone needs to be with him due to his limitations mobility wise snd is at risk of falling....... the list goes on, my mum feels very let down by so called care in the community and seems these care companies are just out there to fleece people is our experience....... sorry to go on.

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Don't apologise for complaining. We should know about poor care so that inadequate carers are exposed. It's just not good enough. I sympathise with your family. Care these days is neglected, it's not always down to money either.

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This sounds absolutely disgraceful charging you to access your mothers records plus I am not sure about taking driving time away inbetween calls.

Is the company delivering the care the result of a private arrangement by either your Mother or yourselves? If so i would speak to the manager of the care company directly to discuss your concerns, do not approach the carers you will get a much better response speaking to the Manager.

Otherwise you could contact your local Adult Social Care department as the commissioners of the care provided! I would be very unhappy regardless of the fact the care is the result of a private arrangement or through local Adult Social Care.

I would be seeking guidance from the company who monitor quality of care delivered by finding your local Care and Quality Commission and seek their advice!

SUE

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It is a care package worked out between social services and the care company. This was from the owner of the care company herself. Mum pays a percentage for her care. My brother has POA. I shall contact the CQC. The person in social services seems to be the care company owners friend when we have been to meetings. She is always already there and doesn't leave with us. Seems their relationship is not business but more friendly.

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Go to the CEO of Social Care.. Bypass your social worker.

x

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I am so very upset, just when things were going nicely for Mum, 2 fantastic carers whom Mum loves and gets on so well we have just had this reply from the care company....

'As you are aware, due to GDPR and data protection we have made the move to online care planning. It is a safer and more effective way of delivering care and actually a way that is now recommended and encouraged by the Care Quality Commission.

To Council Social Care - please can you find another agency who provide written care plans and notes to take over this package of care?'

'Thank you ........, what a lovely man you are!

Our notice is 4 weeks from today. Please let me know what 'data' it is that you require and I will ensure that it is ready for you at the end of the notice period.

Please don’t email me again. '

Just because my brother and I said we don't see why we should have to pay to access Mum's notes and that it was dangerous for other health workers not to see how Mum is via the records. Only yesterday I found Mum to be very very sleepy and wobbly. I found that the carer did not give her the T3 in the morning as the pill was still in the dosette box but a doctor wouldn't have seen that it wasn't signed for! I am at a loss, different carers means so much more work for me sorting out their problems. These are the best carers Mum has ever had. It is so cruel, I cannot believe it is happening. Every time I think I might me able to have time to myself something comes along. My brother has POA and is very conscious of hacking, he won't even use whatsapp and I can't send him a photo. If it is because of GDPR why haven't we been asked to sign anything? And why is the agency saying seek another care agency if they all have to change to digital because of GDPR.

I am devastated, it will really hurt Mum, every time she builds up a good relationship and calls them darling they suddenly are taken away. They don't seem to have their clients at the heart of what they do, just money.

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That's a really poor attitude from a care company. I don't envy you.

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Absolutely appalling. You are well rid but I understand how you feel.

Social Works first thing Monday morning. As I said before...your Mum has been assessed by them and they have a 'Duty of Care' to provide for her assessed needs.

Write to the CEO and inform him. Start at the top....that gets results.

x

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This was from the owner of the care company. She used to be in the Police. She is very officious and abrupt!

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I realised who she was...not the ideal person to run a care agency.

x

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Late last night an email was received from the owner of the care company saying that she will agree to continue with the care package as no other agency would take on her care package. That she wants her to be able to stay in her own home despite my brothers behaviour towards herself and the company. That she doesn't put up with abuse or threats and should she find herself back in this situation she won't be able to continue care. She goes on to say that the online system has been changed and that it might be of interest to us. Oh my, talking about threats and abuse, I can't believe it just because my brother complained. She is the one abusing us and threatening us with removal of care. Anyway, thank goodness care is continuing with Mum's lovely carers, they are just as shocked as us. Thanks for all your support through this time it is bad enough with Mum having dementia, we don't need this added stress. x

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XXX

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