No cover at agency

[Blue Mermaid]

Here I am again doing the night shift, (caring for Mum), because the agency doesn't have anyone to cover the night sitter who called in sick this evening. I know it was last minute but shouldn't agencies have bank staff? There are situations when carers have to leave there and then (that's happened to us too), so, surely there should be cover however short notice it is?

Our last live-in carer walked out 2 weeks before Christmas, without notice and the agency had no one to cover her either. The CCG could not find anyone at that time of year and in the end, we were left for 6 weeks with no live-in care. I made a formal complaint to the NHS (Mum has CHC funding) and that got things moving almost straight away.

It was actually a blessing in disguise, as we had so many problems with the live-in care and had been asking for day sits for a long time but the CCG always said it was too expensive. I don't know if it was the formal complaint to the NHS that did it, (see above) but they agreed to day sits after that!

So, my question is, as I said, shouldn't care agencies have a team of bank staff to fill in at short notice? If not, I see a gap in the market for an agency of bank care workers!

Lord knows if I am going to get any sleep and it's another new day sitter tomorrow, so I will have to explain everything from scratch again. She is due to arrive at 7 am. If Mum is having a bad day, I won't get any sleep tomorrow either with someone new here. Even if I go to bed, I will just lie awake worrying what's going on down there.

[Greta]

It's all very difficult. We had agency carers and CHC, but didn't need all day and night. When I went away for 2 weeks for respite, we did have a night carer in. CHC suggested that they got a live-in carer for 2 weeks instead of just night, quite a good idea, but our agency said that would have been a different agency, so I didn't take the risk. In our case we had already got a relatively expensive agency because so few were prepared to send double-handed care to our location (traffic problems). So can your CHC not get a different agency in too? But that leaves you with more new faces, exactly my problem. I was not having unfamiliar carers in for 2 weeks while I was away. I suppose better a new face than doing it yourself for 6 weeks - I agree it's unacceptable.

[william _1702]

12/02/2017

No cover is not unusual, I have had two occasions when cover was required.
1. My doctor admitted me to A&E but made no arrangements for my wife even though I carry a card saying I am a carer, end up discharging myself until arrangements could be made. A&E were not interested.
2. I fell and cracked my head wife called ambulance, PARAMEDIC called agency to arrange cover got told NO STAFF. they admitted both of us to hospital :- one bed needlessly blocked.
So I say don't hold your breath as far as agencies are concerned.


I do hope things improve for you.
Regards

[Blue Mermaid]

Hello Greta and William

Thank you very much for your replies and sorry I've taken a while to say so.

Sorry also to hear of your experiences. Did the night carer prove to be good Greta? It's terrible what happened to you and your wife William. It feels like nobody really cares doesn't it? It's shocking that the medical profession can sometimes be the least caring of all.

I did the night shift for another 2 nights this week as well. The first night, they had arranged cover but nobody turned up! Turned out the manager had forgotten to put it on the carer's rota before he sent it to her! Second time, it was last minute again and no cover.

Tonight, we have someone new from another branch of the agency. So, it will be yet another night of starting from scratch, explaining everything and then not being able to sleep, wondering what is going on down there and are they as useless as most of the carers we've had. Sometimes, I'd rather be doing it myself, as they can be more trouble than they're worth.

The day carers are driving me mad too. I had high hopes for the day sits instead of live-in care but they're not working out at all. I only trust one of the day carers (and one of the night carers). The rest are so unprofessional. Just sit around watching tv and chatting on the phone. I asked one of them to mute the tv whilst I went for a nap. Not for my sake but I was worried she wouldn't hear Mum call. She has a very soft voice, due to Parkinson's. The carer did not like it but in the end, reluctantly muted it.

After going upstairs, I realised I needed to come back down for something and to my amazement, she had turned the volume back up! When she realised I was there, she muted it again. For the rest of the day, she muted it when I was there and turned it up again as soon as I went upstairs. She also made 9 phone calls that day! One of them was made in the toilet and I could hear Mum calling. No one there. I called outside the door, that Mum was calling her. She apologised and said she was talking to the agency's 'out of hours' (it was a Saturday), about her shift the next week. I did not believe her.

Then the day sitter the next day was just as bad. I came downstairs to find her fast asleep with her hat pulled down over her eyes and the tv on. I went in to check on Mum and found out she'd had no medication for 7 hours. She was very thirsty as well. I could see the carer waking up in the next room after a while but she did not bother to come in. Her phone rang and she was chatting on it for a whole hour! After that I noticed Mum's pad was soaking wet. I could see a puddle forming between the sheet and the mattress. Her top was wet as well. I called the carer in to help me change her and the bed. She said we should wait for the drop-in carers, as they said they were coming early. I said no, we needed to do it straight away. Right decision, as the drop-in carers didn't turn up for another hour.

She was here today and just as useless. I found Mum thirsty, hungry and in need of her medication. The carer carried on lounging, watching the tv, whilst I helped Mum. She also refused to give Mum her medication when she wanted/needed it this morning. Said she couldn't have it until 8 am. When I questioned her about it later, she said other patients on that drug (for Parkinson's) take it every 4 hours (I'd already instructed her on her other visits to give it to Mum as soon as she is awake and able to swallow). She doesn't know what she is talking about. Every Parkinson's patient has an individualised medication regime. Like all the carers, she has had no training in Parkinson's whatsoever. They all think Parkinson's is just a tremor. That drives me crazy as well. They tell Mum to stop stiffening up when they are doing personal care! As if she has some control over it! They try and force her fingers open as well (when washing her hands), which is extremely painful. She has Dystonia in them and they are permanently in spasm (contractures). A carer noticed they were more flexible yesterday. That was because she'd had a rolled up bandage inside for a whole night, so they were slightly open. She said to Mum that she was opening them for her now, as she had learned to trust her to be gentle. Utter crap! Mum has no control over the contractures! They are all idiots!!! Of course, they don't know what Dystonia is, even though I explain it to them and none of them are interested in researching any of Mum's illnesses. I show them an excellent booklet from Parkinson's UK, explaining how to care for a patient with Parkinson's (aimed at nurses in hospitals). They're not interested in reading it though. Of the ones that do seem interested, they just flick through a few pages and lose interest. Hopeless!

I complained to the agency Manager yesterday and told him I wasn't happy with the majority of the carers. I asked to have a different day sitter. He said nobody else was available. All the other day sitters had their regular clients. He did say he would talk to the carers in question (and all the night sitters who fall asleep - supposed to be waking nights. Another major problem) but I said not to if they were going to continue coming here. It would just cause bad feeling and then we'll have to live in an atmosphere on top of them being useless.

We're still waiting for a Personal Health Budget but that could take 6-12 weeks. I bet it will be even longer. When we finally get it, we'll be able to change the agency. The one we wanted is fully booked now. I don't know how we'll decide which one to go for, without a personal recommendation from someone and I don't know anyone else with carers in our area. It would be good to choose our own and employ them direct but we'd need a big team for the package we have, to allow for illness and holidays too. Would be very stressful and difficult to find a good team of carers. There are introduction agencies as another option.

I still feel like our home has been invaded, even without the live-in care. Sometimes, I feel like screaming for them all to get out of our house!

By the way Greta, we are on our second agency from the CCG/CHC. The first one was even worse! The CHC team are always less than sympathetic if I have a grievance. They would not be happy if I asked to change agencies again. They make me feel, like I am the one causing problems. That's why it would be better to wait for the Personal Health Budget.

[Blue Mermaid]

I know we are lucky having the CHC package, when most people are turned down. We are also lucky, having finally been awarded funding for 24 hour care. It was a fight but we won in the end.

I just thought some of you reading this and struggling to care for your loved ones on your own or with not enough outside help, might think I shouldn't be complaining and how lucky we are to have funding for such a large package.

I did struggle alone for a very long time caring for Mum. Then doing the night shifts was still a struggle, before we had night care, as I was still needed in the day as well. Believe it or not, it is still a struggle, even with all these carers. I am sorry if I sound ungrateful though.

[MrsAverage]

Blue Mermaid
No need to apologise and I thinks its obvious even with a full package of care that you struggle, and I think everyone's sharing of experiences on here is very beneficial and helpful.
It must be galling after such a long and difficult fight to find that even the top package is not without its problems in reality.

This is a forum for all carers and your posts have shown what a long and difficult journey you've had.

How long since you had a proper away from it all break,and when is the next one?

Xx
MrsA

[Greta]

Just to answer your question, Blue Mermaid - but our situation was nothing like as bad as yours, I just wrote to put my piece in on a change of agency. I'm sorry to read about your continuing difficulties and hope you are soon in a position to change agency again.

In the two weeks I was away in October, the agency had difficulty finding a night carer. So for the first week we had a really good one who I knew and could discuss things with in advance. But to be honest, the night carer had little to do in our case, as my brother was bedridden and didn't call out. He also had good hearing so he would watch TV a lot of the night, but not very loud. The first night carer did try to persuade him to eat and took a proactive role. But when I was there outside holidays, I did nothing at night! Cup of tea before midnight, breakfast at 7.30 am, and between that I was upstairs in bed. They put a night carer in for safety reasons.

But the second week, the agency couldn't find enough night carers so it put it a woman my brother can't stand. I had great difficulty persuading them to stop her coming in the following weeks on the evening call too. I had already twice asked for her never to come again even before the holiday. But fortunately she did not have to do much, just be there for the sake of safety. When I got back I found the cat's bowl had not been cleaned and its food had gone off, so it wasn't eating. I hadn't of course told her to wash the bowl and clean out the old cat food every day because I thought it was obvious. All the carers knew our cat was extremely greedy and it was not normal for it not to eat.

I can see that if the night carer had been needed as much as yours, we could easily have been in the same position. And actually most of our carers were really good. They did not all take over things proactively, but I had none of the idiocy about meds you describe. Of course we had CHC too, but as I said, and as you know, you are rather trapped with your package then, as everything would be more complicated or impossible to change. I've got a friend with a daughter with advanced MS and not long to live who has similar problems with night carers. They sometimes simply sleep themselves.