“That is absolutely shocking”

A quote from a social worker after I told them that i’m not having a hysterectomy because there would be nobody to look after my children if I did. The social worker is not connected to myself or my family and does not work for ECC.

My response was as follows:

That is the difference between Social Workers and service users, you are shocked, i’m not at all. I’m just resigned to it happening. Under the care act I qualify for help, but everything, legislation, education, knowledge, best practice, is pointless if it’s not put into practice. No unpaid carer would be shocked at what has happened. The voice of the service user is rarely listened to

My hysterectomy was booked for the 16th March, one of my children would not have been able to attend education during the time I was recovering, the house would fall apart, and the peaceful and calm atmosphere in the house would descend into disaster. The reasons why I was having the hysterectomy are detailed here:


I’m used to it as an unpaid carer, everyone knows that unpaid carers will sacrifice anything, even their health, to care for those they care for, so the situation i’m in is a common one. It was becoming increasingly clear to me that my child without autism would be doing the overwhelming bulk of everything while I was recovering. So a child doing the work of an adult who cares for three people with autism. That could have been the case for 6 weeks.

That wouldn’t have been fair on the child, I just couldn’t let that happen, so no hysterectomy.

Social Workers only get to see those who they are working with and have no knowledge of all of those who are let down. Management are a different story but those actually on the frontline only see the cases they are given. If you are not given a case you don’t even know that person who desperately needs help is being failed.

Hence why the social worker was shocked and i’m not.

I was talking to another unpaid carer a few days ago about this and they weren’t shocked. No unpaid carer would be shocked that an unpaid carer is having to not have medical treatment because there is no help available to help with their caring duties. This is normal in the world of the unpaid carer.

I’m not saying we are martyrs but we do have to prioritise our caring role over our own health, we don’t get the same opportunities as others, we can’t socialise, we can’t go out and work, we cannot do what we want to do.

It doesn’t matter what the care act states, if those that are meant to provide services refuse to do so by ignoring the care act, there isn’t a lot you can do. I could fight, complain, go to the LGO, but even then the LA would probably still give me the run around, i’ve got too much on my plate to add trying to get help to it.

So like the majority of unpaid carers, I will just do my best, neglecting my health because I have no other choice, i’m not angry about it, i’m not sad, i’m just resigned, it is how it is and it’s not going to change.

In my case a social worker was assigned, said that I couldn’t get help as an unpaid carer as they weren’t going to help me as they don’t have enough money, and any help I want I would need to pay for it out of my benefits. She said she could help with housing.

That was end of August/September time. Heard nothing and then just before Christmas I found the piece of paper with her details on it that I had written down, called her, she lied about having tried to call me, and then organised to come round and see the house.

Then my mum got rushed to hospital, we were then told she wasn’t going to make it. Luckily the social worker called before she came round as I was at the hospital, I told her I wasn’t at home and told her about my mum. I also told her that I had just been diagnosed with stage 1b1 adenocarcinoma of the cervix, her exact words were “That isn’t anything to worry about”. She then said she would “call me in a week to organise another appointment”. That was over 12 weeks ago and i’ve heard nothing. I am not going to hear anything either. I haven’t got her details, I have nothing in writing, absolutely nothing, I am not certain what her first name is, I have never been told her surname. She told me I couldn’t have her mobile number as she can’t send texts as she has fine motor control problems. I believe she is lying, when we met back in August/September she was writing a lot of notes, her handwriting was neat and she wrote a lot over a long period of time which as someone who has fine motor control problems I cannot do. If she honestly couldn’t write texts, she could use speech to text, every phone has it. I am also certain they must come across service users every day who cannot make calls and thus prefer to text, so i’m fairly certain that social workers who do have problems, utilise speech to text. Not to mention email would be an option, she refused to give me her email address as well.

So i’ve not got her contact details. It doesn’t matter as she made it extremely clear that she didn’t care and didn’t want to help. I am seriously struggling at the moment with everything, it’s really very bad, and I wouldn’t want that kind of person in my life anyway, I have got so much to deal with right now that I cannot and do not want to deal with her attitude.

I’m not even really blaming her, she is a product of who she works with, and ultimately a product of the whole social care system.

If you have a plant and give it less and less water every single year you will find that the less water you give it, the less fruit or flowers it produces until eventually it dies because the amount of water it is getting is not enough to sustain it. This is what has happened to the whole social care system. Less money is being poured into it, each year more is expected with less. Social workers are burnt out, service users are being failed altogether, and councillors are ignoring it in favour of telling everyone how wonderful their services are even though so many are being failed.

The same basic story of desperately needing help and not receiving it, having social workers who ignore you, talk down to you, don’t contact you, don’t do anything, is not unique to me. I’ve heard the same from plenty of others in Essex. The message we are receiving from Essex County Council is clear, we are on our own.

Of course we will be the first to be blamed if something goes wrong.

If I decided to just start doing nothing and letting my child without autism do everything, make food for others, do the shopping, sort things out, clean, sort things, basically fully take over my role, that would be a child protection issue. Yet that is also what Essex County Council expect me to do if I want to take care of my health and they clearly feel that is the better choice and an acceptable choice to them.

I did find it shocking that a social worker found it shocking, because myself and by unpaid carer peers accept things like this as the way it is, I guess I expect everyone else to. Social Workers should be concentrating on best practice and how to make things better for every single person they are assigned to and service users as a whole, which is likely why a social worker was so shocked. You do the best for those who you are assigned to help, nobody hears about those who the system fails by doing nothing, we are the unspoken ones as we are not recorded.

I started writing this a few days ago, then I got ill, but i’ve had a lot of time to think about this and I still have no feelings about having to forgo medical treatment because of my caring role, those I care for come first and it’s just how it is.

The system is broken and unpaid carers are a group that local authorities can easily ignore and save money on helping by just doing nothing. They know we will carry on caring even if it negatively impacts our mental and physical health. The government has been giving social care less and less money each year and this obviously impacts services. When the local authority, like Essex, is run by Tories, they are all about the cuts that have been made to social care budgets but still want to look good so they get voted in again. One of the ways Essex does this is clearly by utilising The Social Work Awards, you don’t have to be good to win an award there. They won employer of the year award in 2019, they recently lost an employment tribunal where a social worker took them to tribunal regarding bullying by one of the service managers who shouts about how wonderful they are and use the winning of the award in 2019 as an example.

They also show off about what they have in place, spending money on things like their commitment to carers, and all the crap that goes with that, glossy documents etc. Yet they do nothing that they list on it. Given that most voters aren’t unpaid carers they have no idea that they are lying through their teeth about all the wonderful services they offer carers. As i’ve talked about on the link to my other blog post, all 10 0f us at the carers CQC thing had received no help as a carer, that says all that needs to be said about how they really feel about us. We are literally at the bottom of the pile when it comes to help.

In theory I am still under them for help, but given the last conversation I had involved me telling the social worker i’d just been diagnosed with cancer, that they were giving me an MRI and CT scan the next day to check for spread, and that they would then come up with a treatment plan which would likely involve a hysterectomy, and that was 12 weeks ago, i’m never going to receive a phonecall.

I told the Macmillan nurse that I was worried because of my caring role and how i’d cope with surgery, she said that I could contact adult social care and they would help. That would have been three weeks after the social worker told me she would contact me “next week”, she’s eleven weeks late.

I’m not saying Essex County Council hates unpaid carers, that would not be true, they love us because they know they can treat us like dirt and refuse to help. They can they use our roles to show off to constituents and John Spence, the cabinet member for Adult Social Care can show off about their commitment to carers without actually doing anything for carers that they state. We are a win for them, points with the voters, but they don’t have to spend any money on us.

Of course this backfires when things reach crisis point. I’m hoping that doesn’t happen to us, although I can honestly see that happening at some point. I can say that those I care for have been incredibly let down by the system and it has harmed them. The failure to help me as an unpaid carer will end up costing the local authority more in the long run as more services will have to provided in the future, basically when things do reach crisis point.

It is what it is though, as an unpaid carer you just expect it to be this way. We are talking about a local authority who have chosen not to contact me for 12 weeks when their last contact was being told I had cancer. I am thinking of making a SAR to get my records, just the ones from meeting the social worker in August/September, and the two phone calls, just to see what they say. I think I will do that and publish them.