Carer & Career Updates – January 2026

After everything Mum and I went through last year, it’s fair to say that 2026 has had mixed beginnings for us. But ultimately there are signs of hope and potential for the 12 months ahead. So I wanted to give an update about caring for Mum and have a little rant about my work situation, so you know where we stand at the moment, before I do my Favourites post about the month soon.

Contents

• Caring For Mum
• My Career
  • Support Cuts
  • The Impact
• Looking Forward

Caring For Mum

On the plus side, Mum is doing a lot better, touch wood. Taking melatonin supplements for the last few months has made a huge difference for starters, as she’s been going to sleep at night when she’s supposed to, and hasn’t nodded off at all during the day for a good few months now. That in turn has improved her focus, mood and confidence during the day, so she’s doing household chores as best she can, she’s much happier and more affectionate, and she’s really looking forward to going out and about in her new wheelchair when the weather improves.

She still hasn’t fallen over since breaking her wrist in August either, due to various factors including balance exercises, a better pair of slippers and generally taking more care when moving around. That’s not to say she’ll never fall over again, because she inevitably will, but it hopefully won’t be as regular or severe going forward.

She still struggles sometimes of course, as there are moments of disorientation, confusion and mild panics now and again – which are exacerbated by the weather right now, as her body diverts resources from her brain when she’s cold, so she doesn’t think quite as clearly (likewise when she’s hot or just tired). She also doesn’t like her brain generating random colours to replace the lack of vision, which we can’t do anything about, and she still occasionally thinks there are different versions of me. But compared to last year all of that stuff is having much less of an impact, because she’s able to cope with it better.

As a result, we’ve agreed with the mental health doctor that she doesn’t need to do routine reviews any more, as she’s also delighted with how Mum is doing. But she’s said we can contact her team directly any time, without another GP referral, if we need any further help, so that’s reassuring. I’ve also got a couple of carers cards now, that give me access to discounts at various retailers and other forms of online support if I want it, and I’m working on a Taxicard application for Mum as well. And it looks like I might be eligible for Carers Allowance now, which brings me on to my other update…

My Career

Support Cuts

At the start of December, my good friend Emily from Fashioneyesta had the devastating news that Access To Work (ATW) are cutting the time that they’re prepared to pay me as her support worker from 37 hours to just 8 – severely impacting her ability to work and slashing my income, with only 6 weeks notice and without any care for how it affects either of our livelihoods.

They seem to be taking the line that the support I provide is “replacement” rather than “enabling”, which we only became aware of in early January, when someone she spoke to at ATW happened to mention that she could apply specifically for enabling support to try and replace what she’d lost. They’ve never mentioned such a distinction in the past, and the only official mention we can find is buried in the ATW staff guide (Section 6, point 25 onwards), rather than any customer-facing documents.

I don’t know if those categories of support are new or not, but if they have always been a factor, why was she awarded support for 3 years, only for it to be reduced now even though things haven’t changed? In fact, my hours increased from part-time to full-time during the first year, as Emily and I settled into our roles and we got to know the extent of her support needs. ATW never had a problem when we explained it clearly to them at the time, happily approving each of the increases that got us to the full 37 hours.

It doesn’t make sense in any case, as even if you take the view that I’m doing certain things for her (e.g. looking up information online, transcribing interview recordings, analysing datasets, etc), it’s only because it would take her a lot longer to do them herself. It’s not that she can’t do them, because she does what she can, but it’s unavoidably slow for her. And yet time is of the essence in journalism, so she can’t take too long.

Therefore, by following her direct instructions as to what she wants, I’m able to take a bit of the weight off, which then enables her to do the most important aspects of her job (writing and publishing stories, conducting interviews, etc). It’s very much a collaborative effort between the two of us, it’s not a simple case of just dividing up the duties. Our roles are very much intertwined, but ultimately she does all the core aspects of the job and I help to make things accessible for her to achieve that. Basically, everything I do enables her to fulfil the requirements of her job role, without exception.

But, you might ask, what about AI? Surely that can take over my duties these days anyway, right? Well, no, it’s not the magic bullet some people think it is. AI is frustratingly inaccurate a lot of the time, which is far from ideal for journalism, especially given the potential legal implications of printing anything inaccurate, so we have to be very careful when using it.

In our experience, AI works best if you’ve already got all the information yourself and just need it sorting or summarising (e.g. analysing a dataset or making notes from a pre-edited transcript). But if you ask it to go scouring the internet for information or to transcribe an audio file, it will often make errors and misinterpretations. It doesn’t matter if it’s Google, Microsoft, Grok, ChatGPT or whatever, they’re all known to make mistakes. So transcripts still have to be edited by hand and you still have to look at the sources of information to check their accuracy. AI can help to point you in the right direction sometimes, sure, but it can also send you down the wrong track or a blind alley. Over time it may get better, but for now it’s still fairly unreliable.

The Impact

The decision to cut her support hours has naturally been extremely hard for Emily, as it’s reduced the amount of work she can do significantly. But she’s fighting against it as best she can. She’s applied for a mandatory reconsideration, which could easily take months, with no guarantee of success. She also raised a complaint, which wasn’t upheld, but she’s now taken it to the next level with the Independent Case Examiner. Plus she’s contacted her MP and a government committee. And she’s working on getting her story into the media, beginning with her own article.

But her situation is sadly far from unique, as many other people have been suffering similar cuts. It’s got to a point now where charities like the RNIB are campaigning about it and the Public Accounts Committee have launched an enquiry, for which they are seeking people’s evidence until Monday 23rd February, so please do contribute to that if you’ve been affected.

As for me, I’m naturally angry with the DWP and the Labour government over this as well, though sadly not surprised either. Their determined attempts to cut PIP laid bare how they see disabled people as little more than a financial burden, and their subsequent concessions were too little too late to change that perception. And now they’re clearly changing the goalposts on Access To Work. They may claim there’s been no change in policy, but there clearly has been for us and many other people. Our circumstances haven’t changed, but the support available has.

So despite the government claiming they want disabled people to be in gainful employment, they seem intent on making it harder. Most employers won’t want to take on the cost of support workers themselves, because their employment costs have gone up as it is, so you can’t rely on them to do that. Yet if the government were to pay benefits fairly and give us the support we need to earn a good income, then the money we get would go back into the economy and to the government in taxes anyway, so it won’t just vanish.

And notwithstanding my own disability, from my perspective as a support worker I feel I’ve been treated with no respect by the DWP. They’ve made feeble apologies to Emily for how the decision has affected her, but there’s been no contact with me. It’s obvious they’ve decimated my income, yet there’s been no recognition of that fact, no apology, no pointers of where I might find support or advice in case I need it, etc. They didn’t even tell me about the reduction in hours, I only heard the decision through a distressed Emily. It’s disappointing, because her original case manager 3 years ago was perfectly polite and supportive, suggesting a wage that I was happy with.

What’s more, when Emily was submitting her renewal form, I made a fair request for an inflationary pay increase and was pushed away. I had been told by Emily’s original case manager back in 2023 that I could do so when I felt it necessary, and this was therefore the first time I had ever done that. But I was told I wasn’t allowed to talk to them, as everything had to go through Emily. And then to add insult to injury, they did give me the increased rate I’d asked for, only to wipe it out and more by slashing my hours, leaving me down by nearly £500 per week. So I find that quite insulting really. Why bother raising the rate if you’re going to cut the total income anyway? They even indicated in an email to Emily that my request for a pay rise was a factor in their decision to award her just 8 hours, like it’s partly my fault, saying it was “in line with the current SW cost and the increase that was requested”.

So while Emily is hugely appreciative of my work for her, the DWP don’t seem to regard me as important at all. I also don’t think they realise that this decision is potentially putting 2 disabled people out of work, not just one. Not that it matters whether support workers are disabled or not, as able-bodied aides are being hit just as badly by all this. But it still adds extra weight knowing that one decision is actually affecting two people with sight loss.

Looking Forward

Despite that rant above, in some ways this situation is of benefit to me. Not financially of course (though thankfully we are stable in that regard), and it’s putting me in an awful position where I’ll be letting Emily down if I quit the job (though we have discussed it and she understands). But on a purely selfish, personal level, leaving the role could be a good thing, giving me more time to focus on my mother’s needs, and my own for that matter.

For the immediate future, out of goodwill, I’ve agreed to do the 8 hours per week with Emily until the end of March, just to buy her a bit of time. And then unless there’s a major change in my circumstances I will have to leave my support worker role, as it’s no longer viable to continue. The money’s inadequate for me, the hours are unsuitable for Emily, and I don’t appreciate how the DWP have treated either of us, so I don’t want them to take advantage of me.

But in addition, leaving is something that I’ve been considering anyway, because the increased attention I’ve been paying to Mum has impaired my ability to focus fully on what is quite an intense job. I’ve still managed to do it, but it has been tiring sometimes, and on occasions frustrating, through no fault of either of the people I’m supporting. I had to alternate doing things for Mum and Emily during the day, from the time I get up, and then helping Mum sometimes during in the evening until she goes to bed, so I haven’t had much ‘me time’ at the end of it all. Supporting 2 people at once is a lot to take on.

Whereas since I started doing just 8 hours a week in mid-January, it’s given me a taste of what it’s like to have more freedom from work, so I can help Mum more easily and have more time for myself, and I have been feeling more relaxed as a result. And in general, now that Mum is in a better physical and mental state, and has a wheelchair she can use, I’ve been wanting to have more time to take her out, help her with things and sort stuff out in the house. It will also be nice to have more personal time to go out by myself again, to socialise, attend theatre shows, visit museums, have nice walks, etc, which I couldn’t do as much as usual last year. Now that I’ve started to do that kind of thing again, it’s reminded me how beneficial and vital it is for my own wellbeing.

In terms of financial stability, I am still getting my disability benefits, as is Mum along with her pension money, plus we have a decent amount in savings, and my aunt is also kindly giving us monetary support. And by earning a low income, I should now be eligible for Carers Allowance, so I’ve applied for that online as well, and we’ll see what happens there. So we’ll be comfortable for a while, assuming there are no other big changes or calamities.

I’m also currently looking at ways of earning a little bit of money with ad hoc freelance work and/or part-time roles, and am currently in the process of arranging something in that regard, which I’ll write more about later if it works out. At some point I will probably need to get a full-time job again, but it doesn’t suit my circumstances at the moment.

But whatever happens, this year looks set to be different to the last one for me, and hopefully in a good way. There’s still uncertainty, but there is potential for it to go well. Emily is in a much more difficult position, and I feel very sorry for her and angry on her behalf, but I know she has the determination and the support behind her to find a way through it.

I’ll keep you updated every so often on my situation anyway. As things stand, I don’t need to do detailed journals like last year, but every month or two I’ll do an update where necessary to keep you in the loop on how things are going. And of course I’ll still be doing my Favourites posts and other content as well, so do stick around!