Carers reassessment result

Hi, I posted a short while ago about my carers reassessment. Well I had it a few days ago and it’s come back that I will no longer receive any one to one support for the time being as I am now considered a ‘managed carer,’ whilst I am under the service still and can access the benefits there is no one to really inform me what those benefits can be anymore. It’s kind of a shot in the dark.

I am pretty annoyed over the term ‘managed carer’ and I just can’t help but feel ignored and not listened to. It’s almost like they have gone “yes, she’s happy. Let’s move on.” But I’m like “No, hang on! What about this, this and this?” It’s like they are happy my needs are met without any real evidence to back it up.

Hi Coolcar

They seem to think their job is done, as if you’re not doing anything that might be caring, or haven’t recognised that your own wellbeing is going to take time and support to improve, no matter the fact that things have got better for you.

Two options: keep doing what you’ve had to keep doing without their help. Or go through the assessment and make it clear what parts are wrong - and ask them to look at it again.

Hello again, Coolcar. I saw your earlier topic where you were delighted to have been offered a care package. However I can find not detail of what was actually offered.

You say you do not like the term: “managed carer”. I am not precisely sure what this means either. You are not being managed yourself, are you?

One can talk about “managed care”. This has various meanings according to circumstances.

  • Its main meaning applies if your caree goes into a care home. The staff there look after meals, medication, general welfare, etc. Your role would be to visit periodically, look after finances and discuss with the staff any health or other issues you think they should be aware of.
  • It has a lesser meaning if the caree lives by themselves but has visiting carers. You would feel the need to visit more regularly, especially during the times your caree is on their own. You would still have discussions with the carers.
  • If your caree lives with you, the term is less applicable, even if carers visit to augment support. You are still on call 24/7.

So which situation does the care package fit more closely? What exactly do you now feel that you are being deprived of?

In this situation, I will explain that mum has a care package in her home. She has both physical and mental health disabilities. She still lives in the rented family home, though she is on the waiting list for supported accommodation. I currently don’t know where she is on that list, they wont tell me anymore information.

As for the carers I just know they sort of help mum with things around the home and appointments. The bottom line is the carers only attend 3 hours a day 4 days a week and there is a range of things they don’t do to support her, and this is where I am expected to come in.

I consider myself to be an admin carer, I deal with all her finances, paperwork and that is a massive thing. You may say how much paperwork can one person have, set up direct debits?. The trouble is she cant be trusted with direct debits in her bank account because she doesn’t have a clue about money nor does she have any organisational skills.

This has all been explained to the carers service, however to them it’s more of a boundary issue.

My argument to them was doesn’t every carer have boundary issues with their carees.

She has alot of mental health problems meaning she cant manage herself properly, she can be very neglectful of herself. It could be argued that alot of it is systematic abuse as a child from her family, but also laziness and a lack of ‘capacity’ to understand things. None the less, she is a vulnerable adult. There is speculation that she may have some neurodivergent disability, though nothing has ever come of it. The speculation comes from her lack of understanding of basic concepts that is generally accepted.

Anyway so during the assessment, I spoke of my health. I was recently officially diagnosed with PCOS, Insulin Resistance. I also have hyperandrogenism. It’s a minor condition but at the moment it has to be managed with exercise, and a good strong diet and calorie deficit. It’s hardly going to kill me, but could lead to worse conditions in the future if I don’t do anything and I could become infertile.

My diet has also been limited due to a certain medication. I am only allowed 15g of fat per meal otherwise the medication will make me ill. The medication wont be long term but could be for the rest of the year and is meant to be very invasive to do its job. I am also under a Endocrinologist to manage the condition, none of this is just a fad, its all proven.

I explained to them that if mum needs me it makes managing my condition harder, since I have to track all foods I eat. I also have to prepare alot of food since I cant really have any highly processed foods such as ready meals, because they are more than double sometimes even triple the fat allowance. Preparing foods can take a longer time and takes meal prepping alongside despite having little freezer space. (I am not allowed to buy another freezer) It is so strict but I am doing it for the good of my future health. However, if I am helping her it puts my health on a backburner.

My house has a little gym and I try to do 30 mins a day alternating between weight training and cardio. (Weight training is good for hyperandrogegism) however I can’t go to work, sort what ever minor avoidable cridis she is having out, cook a meal, excercise all in one day. It’s too much for one person.

As you say I don’t understand what managed carer means really. I raised concerns about this and they said I will still be under the system however the one to one support will stop. Now I am just floating around in a system with no idea about anything. It just seems to be that they are saying I’m ‘managed.’ It just seems to mean they are happy they think I’m happy with my role and don’t have any difficulties. Yet that is not true. Once again caring for someone with mental health issues has been ignored because the support isn’t a set of a physical routine.

I also feel like there support has not been targeted enough hence why I have not really taken anything up that they have offered which may have affected things. 9 times out of 10 the groups they have offered have been in the middle of the day when I am at work and in a different county. I can’t afford to take time out nor is it possible due to strict deadlines which have been that way for over 100 years. Once in a blue moon is fine, but not every week. Because they are in different counties I can’t exactly pop out on a lunch break, it can be a two hour round trip too.

If anyone is concerned why they are in different counties, it’s because of my area. The city I live decided it wanted to have its own independent council a long time ago. When I lived with my ex I would cross the border four times a day 6 if I needed to go to Lidl. Because the area I work in is largely rural there isn’t much of a call for carers groups, everyone is just expected to go into the city as with most things.

Also as a 26 year old extremely nerdy female adult, none it appealed to me and it was not geared towards young carers in any shape or form. I always wanted support and friendship from people my own age since I find my role very lonely.

Not that I’m agist, it’s just that after covid and leaving uni as I did friendship groups changed and many went back home. I kind of just missed the whole spend an hour chatting about an upcoming film thing. When I lived with mum she wouldn’t allow me to go out and see friends at all. Her argument was “I’m not safe in the house on my own, what if someone breaks in.” I wasn’t even allowed to go and see my sister without her tagging along.

I also didnt want to attend a coffee morning, I barely drink coffee. A plate of biscuits is torture to me at the moment. If I look at a party ring, I will probably destroy all my efforts and put on about 20ibs.