How do you tell a good care company for a bad one? It’s a question I have been grappling with for the last two weeks. I am in the midst of what they call personalisation. Basically, at the moment, we only pay part of the cost of my care, the rest of the bill is picked up by the local council, but as things are, I can only ask for care from the council run carers, Cordia. My social worker has made up a pack of information about my needs and so on, to put to the council and if they approve, the equivalent amount that they pay to Cordia will become my personal budget. From there on, I can choose anyone to supply my care, that I feel is best for me. The meeting with the budgeting department takes place later this week and by that point, I have to narrow a list of six companies that operate in my area, to just three. It’s really hard to know which ones to pick when I know nothing about any of them.
It was really easy to get one off the list, as my searches online, showed that the police are investigating them, for a case of cruelty towards one of their clients. Other than that, I couldn’t find a single thing online that is independent of the companies own sites, by way or reviews, complaint or recommendation. All I really have to go on is what they say about themselves, and of course, the Care Commission reports. I spent most of yesterday afternoon, trawling through pages and pages of information, that at the best was dry and at worst mind-numbingly boring. Reading reports and so on is something I am finding more and more difficult. I get through one paragraph and can’t remember the one before. I simply spent ages going around in circles. On nothing but small niggly little things, I took two of the list, but I still have one too many. There really isn’t anything to separate the remaining four, and I would have been surprised if there were. So how do I choose? What on earth are you supposed to do and how do you know if you’re right or not? It really is coming down to whether I like their site layout and design or not, and I know that sounds flippant, but how do you choose these things with so little to go on. Once we have our budget approved, well then I can contact them, have them round to the house and if you like, we can interview them. Something I am equally not really looking forward to.
To be brutally honest, even though the care is for me, I really could do without all of this. I don’t actually feel up to it. I know it’s not the way life works, but in all honestly, I just wish this entire part was over and done with. I wish that I had been satisfied with Cordia, but between them not always being able to supply a carer at the agree time, or being able to send them even to the correct address on two occasions, well my confidence in them has been knocked. They have at last managed to supply continuity in who is here, but that has only happened in the last three weeks. Prior to that, it just kept changing. The carer who is showering me now is fine with most of the work that I ask her to do, apart from two things. Firstly, she has bad knees and winces and groans every time she goes down on them to dry and cream my feet. Clearly, I have empathy for her pain, which makes me feel bad about asking her to do it. Secondly, her favorite topic of conversation is how badly her manager is organising things and her likes and dislikes, of other members of staff. I was never one for gossip, even when I knew the people concerned, but I don’t and that somehow, makes it even worse.
On the upside, ahead of the budget meeting, I have already been approved for the Pendant Alarm. They phoned me yesterday, to let me know that they will be here to fit the sensor and set up my alarm for me on the 27th. When they were on the phone, they questioned the fact we had put down only Adam, as an emergency contact. I explained that there really wasn’t anyone else and that we had looked into having a keysafe fitted, but due to the fact that the outside of our building is made of sandstone, it wasn’t suitable. She then told me that they could hold the key which would give them enter to the close, but not the keys to our actual flat. We would then require a keysafe, fitted to the wall by our flat door to hold the keys for that one, that wall is made of brick and does meet all the requirements. Not only could we have the keysafe, but they would fit it for us as well, saving us the £60 fitting that they company wanted if we asked them to do the work. This was something that hadn’t been suggested before, I thought straight away that it was a great idea. So I went online and I bought one, all Adam has to do this weekend, is go and get some keys cut. The doorbell went this morning, and there was a delivery man, with a parcel for me. I couldn’t think for the life of me what it was, especially when I took hold of it and nearly dropped it. Its weight was over 2kilos according to the label, but it told me nothing else and I still didn’t have a clue what was inside, but there it was, our keysafe.
I am actually finding all this coming and going, form filling, changes and phone calls that I have to respond to, rather overpowering and even somewhat disturbing. If I look back even just to four months ago, my life has been turned and twisted in ways I never thought of and I quite honestly don’t recognise it as mine. In some ways, I do feel and see the benefit of it, but I would just love for everything to settle down and become quiet as it used to be, but it’s something I doubt it will ever be again. I realised the other day that once I start having someone here to cook my lunch for me, I am not going to have a single day to myself, which is something I’m not sure I want. I have spent so many years where my weekdays have been mine, which I actually loved, but now, every day is being eaten into, even if it is for only 15 minutes when the nurse is here to administer an enema, it’s still a day disrupted. For that reason, I am thinking about changing the lunches to just three times a week, then I can still have my two days of isolation. It wouldn’t hurt me to have two days of cold food, after all, that’s mainly what I have lived on for years. I still have time to think about that one, unlike the choice of the company who I’m going to employ as my disruptor.
Please read my blog from 2 years ago today – 22/09/2014 – A new peace
Two Rooms Plus Utilities 
Hi,
It always irritates me that we the chronically sick are left organising it all. When the whole point is that we are too ill to do normal everyday stuff.
I have family but they live over an hour away from me, so there really is only my husband here in an emergency. I have ended up giving my close friends a key so that if I couldn’t reach him in an emergency I can contact one of them. They know it would have to be a proper full on emergency for me to do that but it makes me feel bad that I have to give them this responsibility. I asked my gp about setting up a care plan for emergencies and he gave me a website address and told me to contact them. No thought was given at all to the fact I am so poorly at the moment that I don’t have the energy for this battle. It is disappointing that those who are supposed to care don’t.
I wish you well with your search for a care company. I know through my sister what an absolute nightmare it can be. Especially when you have specific needs and set times for which you need them.
I really do hope you find a team that care for you as you should be cared for.
Rach xxx
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The help they offer is limited, but I have to say that I couldn’t have got through any of this without the help we have had from the social worker. I really didn’t want to bring social services in to the equation, but I am so glad that I did. She was the one who sorted out the whole of the pendant alarm, my first contact, was that phone call to sort out the final details.
It is though extremely wrong how we are left to sort out the actual company who will be my carer. I understand that they can’t show favour to any one company, but at it would help hugely if there was a website where we could leave reviews of the companies we employ. It is those personal recommendations that would make the whole thing so much easier. 🙂
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So, more news you probably don’t want to hear. You will find all service providers will be much of a muchness. It is useful to deal with one person in the rostering office once you have established the kind of carers you prefer, the times you better manage to have help. And for how long. You can always go up the chain of command in a company before you jump ship &go through all the teething problems with another agency.
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I do fear that that might be the case, but I can’t believe that they all can be quite as disorganised, as the company I’m with right now.
On the good side, I now know what to ask, what to request and how to sort thing out from the very start. For me, I think that is partly why things haven’t worked out too well where we are. We simply didn’t have a clue, having never having any contact with anyone in that line of business. I also think that I played in as part of the problem at the very beginning, I was looking at them as I would the NHS, rather than a business supplying a service. This has been a huge learning curve.
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Hi, I’m probably being completely redundant, but if there’s just one thing that I can suggest that is different or makes you think of a better idea, I figured it might be worth commenting. You’ve been at this a lot longer than I, you live across the pond, and I haven’t been reading long enough to know whether Adam is your husband, brother, father, cousin, boyfriend, roommate, pimp, or drug dealer (I feel all are equally likely right now, but as I’ve been reading I’m leaning more towards one or two than the other).
Anyways, I assume you’re familiar with this place? http://www.skillsforcare.org.uk/Learning-development/Endorsement/About-the-Endorsement-Framework.aspx
Could you or your social worker call the number at the bottom of that page and ask for suggestions from a consumer perspective? Or a name of someone to talk to if they can’t help? You’re in charge of choosing a healthcare provider, yet the tools and information to make a fully informed decision are sorely lacking.
I don’t know if working the phone presents a challenge or not – I have a laptop that allows me to make voice calls from it, so if it’s available to you could be useful? (just trying to think of as much as possible)
Also, on this website (http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/national-homecare-providers.aspx) I found the following: “However, some agencies provide services nationwide and these will not show up as a local result if you search for local services (even if their services are available near you). ” Would that explain any lack of information or nah?
The other thing I can think of is having 4 print-outs or check-lists of the care commission standards (if that’s a thing…), and then see what goes beyond that for each place based on their websites ? Once you find out how (or if) any of them go beyond what’s required, you can see which list has extras you’d like or ones you could care less about.
As I said, probably all things you’ve already explored/done, but on the off chance… Hope the whole process goes on with minimal stalling and general complications. 🙂
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Wow, you’ve been busy, thank you. I probably didn’t make it clear enough as I mentioned it only once I think. The list I am trying to whittle down, is one that was supplied by the Social worker. It contained the six companies that offer care in our part of Glasgow. Private care is something that is reasonably new in the UK, and only has become available to the majority, since the government brought in personalisation. The first thing I did when looking at all of them was to go to the care commission site, to my surprise, the one that is under police investigation, came out scoring about the same as the rest of them. I discovered the police investigation, thanks to there name coming up on a search in the local newspapers. I tried searching there, as I thought that complaints and so on, were more likely to appear there, and they did.
I hadn’t seen or heard of the first site you listed, but the NHS site only really gives the guide lines and I have found that it frequently concentrates on England, totally ignoring the different laws and so on in Scotland. Which is where unfortunately where the first site you found also falls down. They only cover England, so even if they could help those down there, they wouldn’t be able to help us.
The NHS has nothing to do with outside care, they seem to see themselves as above getting involved, and of course, like all of these things, (including my Social worker) has to remain impartial.
For the record, Adam is my husband and has been for the last 17 years. (If he were a drug dealer, we would be able to employ anyone we wanted without all this hassle) I personally do have huge issues using the phone, that was until I handed that job over to Adam as well, his time though is limited. I spent nearly 5 hours over the last couple of days trying to sort this all out. He simply doesn’t have the time, but we did spend an further 2 hours last night. Today is the day that we have to hand over our selected three. We have brought it down to three, the one we ditched was because I thought they had too many fingers in too many pies.
Thank you again for putting so much thought into our situation. It was really kind of you to take the time it must have taken you. (((Hugs)))
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Ew, so basically the differences between England/Scotland/Wales are like all the crap dealt with between states over here in the U.S.? Stupid little things that you’re like, hey surely this is the same between these two neighboring states, but NOPE.
Slightly disappointed Adam is not a drug dealer or pimp, but husbands tend to be better long-term, I think 🙂 You’re welcome though – I’m a helper by trade who hasn’t been able to do her job yet, so for me it was a worthwhile use of my time!
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You are totally correct, it is just like the differences between individual states, and yes, it is normally stupid little things that make us different, although Scotland is the one of the three, with the most differences, we’ve been at it longer than either Wales or Ireland.
I’m glad he’s my husband for just the reason you said, as I wouldn’t be without him. Thanks again for trying to help 🙂
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If I am getting worn out reading through your process, I honestly can’t imagine how you feel. I am only going through our work insurance rejecting a short term disability claim, because the wrong form was apparently submitted, well I never knew there was a different form, and I still haven’t seen it to date.
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I quite frankly shudder when I hear the word “form”, granted, some aren’t too bad, but the longer you are ill, the more daunting they all get.
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Thinking about lunches there are options available there too. Have you considered ordering from a company that supplies really good food, to people who are like us and rely on care of others to make meals.
I hadn’t given it a thought until I was visiting my mum and ended up at a WI meeting.as a guest.
… yep! you read right! I was by far the youngest there 😀
Anyhoo!
The reason I went was because there was a company doing a talk about these meals that they do and provided a buffet of things to try. They weren’t bad for microwave meals and made with quality food. Far superior to regular microwave meals by the way! and not actually that expensive if you only wish to fend for yourself for a few days a week. You can arrange how long you want them supplied for & how many days a week etc, it is up to you. A very nice person comes to your house and delivers your order to you in person too, and usually same person every week so you can get to know them which is always useful 🙂
I was very taken by it because Mike, my hubby, does all my meals except breakfast because he doesn’t get up until late morning. Plus, it would give him a break at making lunches and evening meals so much. Well, I mean we eat everything freshly cooked so he spends a lot of time in the kitchen.
Here’s a link to the company I saw the talk about so you can read what they are about and see for yourself what I’m talking about. After all they explain it better. I don’t know if they are where you live or not that is the only issue 😮 There will be other companies that do similar things though I should expect.
Here’s the link
https://www.wiltshirefarmfoods.com/
Take care and wishing you wellness, hope you manage to get your care company sorted with minimal energy Xx
Huge Fluffie hugs
Carole SIan 🙂
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Thank you for the suggestion, the problem I’m having though, is with preparing food, but with both the cooker and the microwave. I find it almost impossible to not knock the container, burn myself with either the steam or the liquids involved, or in the case of the cooker, the pans and trays.
I haven’t prepared a meal personally that took more than 5 mins to put together, in the past two years. I used to enjoy many of the microwave meals that can be bought in the supermarket, all delivered to my kitchen by their delivery drivers. But after accident, after accident, stopped me cooking anything in the past years and when I have tried, I had an accident. As I said I’m more than happy to keep eating cold food a couple of days a week, but I am really fed up of eating it all the time.
Thank you for your suggestion, but it really isn’t going to be of help for me, but I’m sure it will and does help many. 🙂
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I understand 🙂 I make sandwiches and toast and damage myself so do understand. I haven’t cooked a main meal in about 5 years 😮 I do still have my moments when I’m allowed to oversee the cooking of the Christmas ham or prepare a salad but hubby doesn’t like me chopping stuff because my hand eye co-ord is really bad LOLOL I don’t doubt his judgement.
When he goes away I end up living off cold foodstuffs too. Hope you find a solution 🙂
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I had this a long time ago faced with choice. I choose the one nearest home and built up relationship with key admin etc and also they are company who allocate carers mainly to you….OBS interchangeable hols sick and days off. But they have kept mainly same carers new one come as others move on. It’s not a world we imagined ourselves in. I ve talked to one lady who has agency who allocates same carers too. I d look and ring if they offer this service of same carers as the carers like going to same people too as it works both ways.
I ve been lucky and so has other lady I spoke to. I d ring and tell them your situation of consistency and also I have been told your entitled to ask before hand whose coming they can easily send out rota.
As for alarms and pendants that sounds a nightmare too. I don t know, sorry.
Oh boy this is no easy task.
Personalisation look up Simon Duffy he writes alot about it.
Have you ever read spoonydoc s blog I don’t know her but she just has PA s but she is very poorly ATM but has written an excellent blog and is worth a read.
Sending lots of love and understanding.
Another thing I know that happens is when you get or choose the direct payments to employ a PA and an agency along side..I ve heard that works well if you can do it.
Once a good relationship established with agency I hope things can work out for you and Adam. Not a task anyone can envisage in our lives.
I do write long winded so sorry,do my know if helpful or not as I have this full-time stage to come soon.
All the best.x
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Thanks for the tips, I will look into those two blogs you name and see what they have to say. It’s really hard when you don’t know people who are using the same care companies. Some straight forward, simple references would be nice at least.
As you say, none of us expect to find ourselves in this position, it just sneaks up on you and suddenly your in the middle of a nightmare. The social worker has been wonderful, but she is limited by the law, as to what she can really say and do. Yet another situation in life, when it would be nice to have a friend who’s been there ahead of you, not that I’d wish this on anyone.
Thanks again 🙂
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Hi there, I thought about you when I saw this article:
http://notable.ca/canadian-doctors-have-successfully-reversed-the-effects-of-ms-in-a-patient-using-stem-cells/
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Thank you for thinking of me, I have already looked into this and unfortunately, it is only of help to those recently diagnosed, since I’ve had MS for over 30 years, it won’t be of help to me, nor most people who already know they have the condition. 😦
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I know. It sounded like it unfortunately. But I have such strong admiration of you and your fight for your condition, that when I see anything about MS, I think of you as a role model. I know you go through many things everyday that I won’t even remotely understand.. and even if I do, I still don’t remotely appreciate how difficult it is for you. That’s why I respect you – whether you had a good day or a bad day. You don’t give up the fight and your posts are so honest…that I wish I can do something to help you as well as others who are affected by this disease. But I also know I can’t help much except to be a supportive reader of your blog.
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Thank you (((Hugs)))
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