I’ve written a lot about being an unpaid carer to my three autistic children and an elderly relative, and the lack of help as a carer from Essex County Council.
The elderly relative I was caring for was my mum, i’d go round twice a day and help her with personal care and food and whatever needed doing.
My Mum died a few weeks ago, it was rather sudden and it was not expected, she had pneumonia and then sepsis.
The paramedics were amazing. the doctors and nurses in resus were truly amazing, she was then transferred onto a ward.
Again, both the nurses and doctor were amazing. I then got the call that the sepsis had caused too much damage to her organs. We were allowed access 24/7. They did everything they could for her.
She didn’t get a side room until a few hours before she died. The Tories have destroyed the NHS and the care system so you have bed blocking.
The staff were truly amazing. On the day she died I left her bedside in the morning to go to another part of the hospital to get an MRI scan and a CT scan as i’d been diagnosed with cervical cancer a few days before.
When I got back they had stopped fluids and had removed all of the heart monitors and stickers and those needle things in the arms the drips go into. The palliative team came round. She then got moved into a side ward, she passed away that night.
There is not one single aspect of her care that I could ever find fault with. The Paramedics from the East of England Ambulance Service were amazing, every single member of staff at The Princess Alexandra Hospital in Harlow were amazing.
You cannot put a price on the work they do and they clearly don’t do it for the money, but it is fair for them to be paid a living wage and for them all to have better working conditions so I fully support the strike action that has been happening. They aren’t striking through choice, but through necessity.
I’m a complete mess, my grief feels like my body is being torn apart.
She is everywhere and nowhere.
I can’t call her, I can’t speak to her, but I look in the mirror and see her staring back at me, I see her in the faces of my children and I see her in the way they view the world and their actions.
I feel her while writing this blog, standing up for what is right, making as much noise as you can because someone has to.
I mentioned a cancer diagnosis. The day after my Mum went into hospital I was diagnosed with Stage 1B1 cervical adenocarcinoma. The MRI and CT scan on the morning of the day my Mum died were to check to see if the cancer had spread throughout my reproductive organs. The tumour had already been removed under general anaesthetic. There was no spread, I will be having a total hysterectomy.
So the day before my Mum died i’d had the cancer diagnosis a few days previously and was due to have the scans the next day to check for spread. I was absolutely terrified, not even about the risk of spread, just the fact I had cancer and knowing that at any time it could spread and i’d be stage 4.
Not to mention my Mum was in hospital dying, and I was spending every waking hour at the hospital while trying to care for my children.
I have previously spoken about being an unpaid carer and being refused any help from Essex County Council, here are two posts about that subject:
Basically what has happened is that in December 2021 I asked for a carers assessment, had one and in September 2022 found out by way of a social worker that i’d failed and they weren’t going to give me any help.
I was caring for my Mum at least twice a day, and my three autistic children, but apparently Essex Social Care doesn’t think I deserve any help. The 2014 Care Act explicitly says I do, but that’s only a stupid bit of legislation Essex Social Care is meant to follow, who cares about that.
I am going to call the social worker Veronica, it is possible that is her name, or not. I believe her name starts with a V and I think it may be a long one, it’s either a V or an F. I’m not avoiding naming her, I just honestly cannot remember and I have absolutely nothing in writing. She has never told me her surname.
I did have her name and landline written down on a scrap of paper, but i’ve lost that and can’t be bothered to even look for it.
Veronica is an adult social worker from West Essex, so she covers Harlow.
She made me feel like I was just wasting her time, she treated me like I was something she’d stepped in, her attitude was the same with regards to all those I care for. At the time we met it was at my Mum’s house, I had to do a couple of bits for Mum while she was there.
She told me that I wasn’t going to get any help and I cried because I was so burnt out. She told me that I should have an assessment done on my Mum so that carers could take over the caring role that I do for her.
I told her that my Mum wouldn’t want anyone else caring for her and that I wouldn’t want anyone else caring for her.. Veronica insisted it would be better if my mum had an assessment and brought in carers to help her.
Veronica didn’t care about my mum’s dignity, or even that my mum, and myself, are real people and allowed to make our own choices about how we do things. Veronica was adamant that it was either outside carers for mum as that would be the only way i’d get help as a carer.
Not to mention how expensive carers would be. I’m an unpaid carer, I was costing nothing. I have no idea how much carers would have cost but i’m guessing it would have been quite a lot of money. It would have been Essex County Council picking up the bill for the carers.
Then she said about my three autistic children and how I care for them. The big thing i’ve been missing all of this time is that things would be much better and easier for me if they would just stop some of their autistic behaviours. If they did that then it would lessen my caring role as I wouldn’t have to do so much.
It’s brilliant, absolutely brilliant, why didn’t I think of that? This is a lighthearted bit in an otherwise incredibly depressing blog post, but I told my children and then (jokingly) kept on telling them to not be autistic as that would solve all of our problems.
I was talking about my mental health and how well I was doing and said it was thanks to a local charity who provides extremely low cost counselling. I said to her that she should write the name of the charity down as it could possibly help someone else. I actually got to find out about the charity two years ago from a social care family worker. I ended up going from the worst i’d ever felt to the best i’d ever felt and i’m so grateful. Obviously now i’m in the position where this is the worst thing i’ve ever been through, but it’s grief, and while mental health is mixed up in that, my grief is to be expected.
So before I gave her the name of the counselling charity I said to her to write it down. She literally just sat there staring at me and did nothing. It was the most awkwardly rude experience i’ve ever had. What exactly can you say or do when a professional is showing you so much disrespect? That wasn’t her only display of rudeness but it was the worst.
Then she said she would contact my housing officer and see if she could help with housing and would visit us at home with the housing officer. I told her that I couldn’t remember the housing officers name, she said it would be easy for her to find out. It is actually really easy to find out, you just phone the housing people, and give an address.
She said she would organise with the housing officer and give me a call to organise a visit to our home.
Over 2 months later I realise I hadn’t heard from her. I’d written her number on a piece of paper with her name on it. It’s the work landline, not a mobile one.
I gave her a call, she picked up. I said that i’d thought i’d ring as it had been so long. She said that she had called two weeks beforehand and had left a message on my answerphone. That was a lie.
I asked her if she had contacted the housing officer and she said I didn’t give her the housing officers telephone number so she had no way of contacting her. I told her that I couldn’t remember the housing officers name and she was going to contact them to find out. As i’ve already said, it is extremely simple to find out the housing officer for a certain house, she just didn’t bother.
She then said that she has decided to visit us with a colleague. We made a date for this to happen. I asked her to text me the date as I had nothing to write with and that way i’d also have her mobile number, texting is easier than talking sometimes when you are dealing with dates and people who may be on visits. It is also important as a service user to get things in writing as proof that you were told things. My memory is also not so great due to early menopause symptoms so I get people to text or email me everything.
Given Veronica’s previous dishonesty I was keen to put things in writing via text.
She stated that she cannot text so she cannot do that. She said that she has fine motor control problems with her fingers which means she finds it impossible to text. By this point I was resigned to my fate and knew there was nothing I could do. If she honestly cannot text, there is voice to text available and really easy to use so she was just bareface lying to me about her inability to send a text.
I asked for her email address and she just dismissed me. As i’ve stated I don’t know her surname, if I did I would have had her email address as it would be firstname.lastname and then the Essex part.
The date of her visit happened to be the day before my mum died. I’d completely forgotten about the visit, I was spending every single waking minute at the hospital, just having a couple of hours sleep at home, and sleeping in hospital chairs. Luckily she called beforehand.
I told her that i’d totally forgotten and cannot do it because my mum was receiving palliative care in hospital. She didn’t say anything comforting.
It was also a few days after being diagnosed with cervical cancer. I told her that i’d been diagnosed with Stage 1B1 Cervical Adenocarcinoma. I’ll put her response in quotes because I can remember her exact response, I can remember it because ouch, it hurt. Her response was “that isn’t anything to worry about”. This was after i’d told her I was having an MRI and CT the next day to check to see if the cancer had spread.
She then said she would phone me “next week”. That was almost 2 months ago.
So I need a hysterectomy, ovaries will be going as well.
I got given a folder full of information when I was diagnosed, and the number for the Macmillan nurse.
The Macmillan nurse called me and I was telling her about my caring role with my three children with autism and how I don’t know how i’m going to cope while recovering from a hysterectomy. She told me to contact my GP and they can get an adult social worker to help sort something out. I didn’t say anything because the nurse is so lovely.
So Essex Adult Social Care know I was diagnosed with cancer. They know my mum was on palliative care, but that can last for a while, months even. A hospice or home care can be involved. They probably guessed the obvious that she has died though.
Last contact was the day before my mum died and that was two months ago. So Essex Adult Social Care haven’t got a clue how i’m doing, if i’m coping, if I need assistance with my caring role. I could even have been having chemotherapy, the scans could have shown spread.
What they don’t know is that it couldn’t spread, because I never had cancer.
I got a telephone call from the doctor a couple of weeks ago. I am not medical at all but this is how I understand it. My biopsy was looked at by someone and they determined the cells were cancerous and it was staged based on the size of the tumour. That was when I was called to come up to the hospital, given the news, and told I needed the scans to check for spread and a treatment plan would be sorted out from there, and that is what happened.
Then the biopsy was double checked a few weeks later and it was determined that in fact the cells were not cancerous. I wouldn’t be surprised if they were checked again before I was called.
The doctor explained all this to me, the not cancer part he had to repeat because I couldn’t believe what I was hearing. The cells are what are called CGIN, and are nasty and precancerous. I imagine they were close to becoming cancer. The treatment plan is the same, a full hysterectomy. It might not sound like a major difference as treatment is the same but the difference between anything else and cancer is pretty major.
The only thing that I had to go through that I wouldn’t have had was the MRI scan and the CT scan. I didn’t realise how worried i’d been about the cancer thing until it was taken away. I had an apology but to be honest that telephone call is in my top ten best phone calls i’ve received so i’m really really happy. I’m also incredibly grateful that the doctor found the bad cells in the first place.
Veronica and Essex Adult Social Care are still under the impression that it was cancer and i’ve had scans to check for spread but they don’t know what the results are. I also told Veronica at the time that i’d be having a hysterectomy so they know that as well.
For an organisation that spends so much time, effort, and public money, getting themselves all the awards at the extremely very distinguished and important Social Work Awards, they really appear to care very little.
Myself and my children have come up with a plan for when I have my hysterectomy, it unfortunately likely involves one of my children missing at least some education, but it is what it is and the best we can do under the circumstances.
I could call up Veronica as her calling me the next week didn’t happen. Small problem with that, i’ve lost the piece of paper with her name and telephone number on and did not save it on my phone. She refused to give me her mobile number and I don’t have her email. I could contact the switchboard and say “Her name begins with V, er, well, probably”.
I’m fairly certain they could find her by a search with my name if I called though.
I am extremely vulnerable right now and do not need a social worker who dismissed the fact i’d been diagnosed with cancer, showed no compassion when I told her my mum was receiving palliative care, and hasn’t contacted me for 8 weeks, to talk down to me.
Not to mention her lies and thinking that my children can suddenly turn off their autistic behaviours. I’m apparently calling for my mum in my sleep, I need softness and caring when it comes to my family right now, not someone who has already shown she clearly doesn’t care. The pain of losing my mum is still very raw.
That said I am not expecting her to contact me again. I don’t believe she was planning to contact me again after the meeting in August/September. The fact that she lied about attempting to contact me when I contacted her says a lot to me. I think Essex County Council Adult Social Care have an unwritten policy with regards to carers, that if we don’t contact them when they are meant to be helping us, they won’t contact us.
In the morning on the day my mum ended up dying I was sitting waiting for my MRI. I’d been at the hospital since 2am with my mum so it was literally a walk of about 100metres. I got there early in the hope they would see me early. Someone else was having an MRI so I had to wait. I’m waiting and on my phone and I got an email from ECC asking me if i’d be interested in being part of a carers focus group as part of the care quality commission peer review.
It made me angry given the way they had treated us, refused me help as a carer and now one of the people I care for was dying. I was literally shaking as I replied that I would like to help.
They ended up choosing ten carers from Essex who have must have come into contact with Essex Adult Social Care as part of their caring role, I believe it was from participating in another group thing for me, that was online, and I can’t remember.
I could give you all of their email addresses because who really cares about the Data Protection Act? Not ECC when the email was sent to us all with our email addresses in the CC field and not the BCC field so we all got each others email addresses.
The focus group was being held at Essex County Hall in Chelmsford, it’s Essex County Council’s main headquarters.
I was incredibly nervous, for a start in case anyone who i’ve mentioned in this blog saw me, or those who have never met me either recognised my name or my face from facebook or whatever. At the moment people do tend to notice me and people do look at me.
I was also nervous because I was about to enter a meeting with 9 other people who were going to be talking about how wonderful ECC have been towards them as carers and how much help they have had. Then I was going to be the sole voice in the group saying i’d had absolutely no help and it would be awkward, people would be rolling their eyes or whatever when you go against the grain.
The way that Essex shows off about their social care, both children’s and adults. Bragging about all of the awards they get. The Essex Social Care Academy cannot stop bragging about how amazing their adult social workers are and how highly trained and amazing and all of that, i’d just assumed there must be at least something behind all that bragging.
It was worse than I could ever have imagined and it is the catalyst for this blog post.
There were two people from other council’s, the peers doing the reviewing. They were nice, seemed very passionate, they were clearly listening intently and making copious notes. They decided to just go round the table, each of us were to give our names and then talk about our caring role and Essex Social Care. I was the 7th person to tell their story.
It was absolutely horrible, 10 people, all with different caring roles, all of whom had received no help whatsoever from Essex Social Care for their caring role. Every single person, and thus the people they cared for, had been failed by Essex Social Care.
It was painful to watch and very upsetting, if it had been pre-recorded and I was watching it I would have turned it off.
I added my story of both myself and the people I care for being horrendously failed by Essex Social Care. I cried while telling my story, I wasn’t the only one who cried while telling their story.
The whole point of the peer review is for Essex Social Care to see what they can change to do things better. I’d like to think that something will change but I don’t think it will.
You have all of the bragging by all of the leaders on how wonderful social care is. You have the Essex Social Care Academy singing from the rooftops about how awesome their adult social care is and all of the awards they have won from the only awards that are more highly regarded than the Oscars, the Social Work Awards.
There are adult social workers who appear to have no knowledge of the 2014 Care Act, including Veronica. Under the care act I very clearly qualify for help as a carer, yet Veronica says no. The care act 2014 must be taught during the social work degree course, so it’s rather clear that a lack of knowledge about it means that the social worker qualified before 2014, and Essex Social Care doesn’t even train their staff in the basics when it comes to the care act, especially the parts pertaining to carers.
Something that I am absolutely certain about is that John Spence, the cabinet member for Adult Social Care, does not actually care about the people. He doesn’t care about those caring, and he doesn’t care about those that need care.
I have found the whole process of asking for help as a carer dehumanising. I qualify for support as a carer under the Care Act 2014, but ECC say no.
Veronica said she might be able to help with housing, that was almost 6 months ago and she hasn’t even contacted our housing officer. She just does nothing and then lies about it. It’s clear she actually doesn’t care.
How can someone whose whole job is meant to be about caring for others state to a frightened woman who had just been diagnosed with cancer “that isn’t anything to worry about”? How can a local authority who pay almost £20k each year to get awards for their social care think that is okay?
Despite my caring role now only being my three autistic children, I am still really struggling. I have nobody who can help out. When I have my hysterectomy one of my children will have to miss education because there is nobody to take them and I won’t be able to drive for a while.
I’ve seen Essex County Council making a big thing about all this menopause stuff and how it’s all important to acknowledge that firstly half the population will go through it, and that there are symptoms that are not great and the person may need additional help.
Yet when I asked for a text message from Veronica because i’m just starting symptoms of the menopause and my memory is terrible, she lied and said she can’t text because of fine motor control problems. It’s possible she wasn’t lying about the fine motor control problems, although given she keeps lying I can’t believe anything she says, but it doesn’t matter as she could still use voice to text.
I’m currently struggling greatly with my caring role, when I have the hysterectomy things are going to reach crisis point. It’s very telling that I cannot rely on the local authority to help me during this time.
I’m not going to attempt to contact Veronica and I doubt she will contact me. I’m too grief stricken and vulnerable to deal with the way she talks to me, it’s not right and i’m not going to accept being treated like that. Zero empathy when I told her i’d just been diagnosed with cancer and my mum was dying. I knew as soon as she said she would ‘call me next week’ that I wouldn’t hear from her.
Just one more thing which shows that ECC just has no idea about unpaid carers, or the public in general. It stated clearly on the invitation letter that all travel expenses would be paid. It’s about 20 miles each way in the car, I drove, then £3 for parking I think it was.
I put in about £30 worth of petrol before I set out. After we had finished we were told that we would get 45p per mile and would need a receipt from that day for petrol, something they hadn’t told us about beforehand. I never get petrol receipts, they ask if you want one, i’m pretty sure i’m not going to be returning the petrol, so I never get one.
We then get an email stating that we can use any petrol receipt for the previous 6 months, again, I have none. They then state that they can authorise expenses with a newer receipt. So I have to spend more money to get back the money I already spent on petrol. I know i’ll be able to use any petrol I put in so I won’t actually lose out but i’m an unpaid carer. It would have been great to have already had the expenses money back considering the peer review thing was on the 7th February. Instead I have to wait until I have enough money to put more petrol in the car so I can use that receipt to claim back the expenses.
I get doing things a certain way for staff, but seriously? Making the public jump through all of these hoops? They have my address, Harlow to County Hall is about 20 miles, the closest car park is £3 for the amount of time we spent there. There would be no way for any of us to claim for miles we hadn’t done. I guess someone could say they live in Inverness and drove from there, but questions may be asked considering Inverness isn’t in Essex. There is no wiggle room for any of us to try and cheat and claim more miles than we did, it was a simple home to county hall, parking, and back again.
So there you have it, Essex County Council are failing carers and those who they care for.
I’m struggling with my caring role and my living situation, things will reach crisis point when I have my hysterectomy.
Harlow council are doing everything they can with regards to our living situation, it would having been helpful to have the support of a social worker as they can do a lot with regards to housing help.
At the time I phoned Veronica and she organised to visit, a phone call from the council regarding a housing application form was made and a phone appointment was set up for exactly a week after Veronica was meant to visit. I received that phone call and I explained that I was not capable of doing it then, so we arranged for the week after.
We had that phone call and the housing application was filled out.
Veronica said she would arrange for an OT assessment, she didn’t bother. The council have their own OT which I didn’t know so the council said they would get her to contact me.. She called me, arranged a date, came out for a visit, listened to me, and got the benefit of being able to hear from my children of their difficulties in their own words. Then called me for an hour long conversation to clarify some things she needed for her report.
All of that during the period where Veronica hasn’t even bothered contacting me let alone done anything. In the 6 months she has been assigned to me she has done absolutely nothing. I get that she did make an appointment to visit that I had to cancel but she hasn’t bothered to contact me since.
As far as I can foresee this will actually be my last personal post regarding anything to do with Essex Social Care as there won’t be any more contact. I’m not going to contact Veronica to be treated and talked to the way she has already treated and talked to me.
I could put in a complaint, both about Veronica’s behaviour and that I meet all the criteria for help as a carer but have been refused help, I could also contact my MP for help.
I am too vulnerable to deal with any of that, i’m also too vulnerable to deal with either Veronica or another social worker who would probably act just like Veronica. I don’t want Veronica in my home, I especially don’t want her around my children with her views regarding autistic behaviours being a choice, that would harm my children.
What was clear from the peer review is that Cllr John Spence and Essex County Council do not take unpaid carers seriously. 10 random carers in a room, every single one with terrible stories of receiving no help as an unpaid carer in Essex. There is no help and it would also be a waste of time me pursuing help and fighting, i’m just done.
I will still be posting about ECC social care in general and obviously the highly regarded and highly anticipated Social Work Awards, given that i’m helping to pay for them I feel I have the right to a voice regarding them.