Who cares?

Maddy Fry exposes Britain’s broken social care system.

It’s hard to look at Matilda Ibini’s CV without feeling intimidated. A writer with a Masters degree funded by BAFTA and Warner Bros, her work has been staged at the Old Vic, Shakespeare’s Globe and the Royal Court Theatre in London. 

She also happens to be a wheelchair user, one who is heavily reliant on carers and support workers to meet her daily needs. 

Her life, to say the least, is a varied tapestry. Yet care agencies and her local council only ever choose to see that final detail.

“They reduce us to our bodily functions. The policies in place don’t see us as whole dynamic humans, and the general idea most people have about living with a disability is so patronising and dehumanising. We’re supposed to be grateful for scraps of support wherever we can get, even when it’s nowhere near enough to meet our needs,” she says.  

Matilda is one of the many people caught up in the Kafkaesque nightmare that is the social care sector in Britain. The picture she paints is of a system that is creaky, bureaucratic and starved of funds – and this was before the notorious austerity drive of the 2010s, a political juggernaut now widely seen as unnecessary. The result is that vulnerable people have been deprived of vital local services.  

For Matilda, the most obvious example of this is the restricted number of care hours she gets each day. Some of this is due to the meagre amount of government funding given to local councils; care work is erratic and underpaid, with some staff earning as little as £9.50 an hour, and the traumas brought about by the pandemic have caused many to leave the sector. In May 2021, the adult social care sector had a shortfall of 5.9%. By April 2022 it had reached 10%. 

The exodus of migrant workers from Europe since Brexit has left a void that the domestic workforce has so far proved unable or unwilling to fill. 

The implications for a person’s quality of life can be serious. 

“I get direct payments from the government to contribute to the cost of my care, but I still have to cover a third of it out of my wages. I have to use my earnings and disability allowance to cover the shortfall, which is often overnight care,” Matilda explains. “I was told by the council that they don’t pay for overnight care even though I’ve had several health crises at night. The implication is that you have to accept that this is just how it is.”

She has few positive things to say about the agencies used by councils to outsource care work: “It’s a sector where people need to come in with the right attitude, but they are often underpaid and overworked meaning the care they provide is often patronising rather than collaborative.”

Like anyone else, she has a busy working life that means her days can be unpredictable. But she says the agencies are too regimented with their schedules, having an ‘unrealistic’ assumption that she will just wait inside all day for them. It feeds the prejudice that disabled people have nothing better to do than wait for care.

Despite their considerable expense, when carers do turn up they are often inexperienced and poorly trained. The high turnover in the sector has led to a lack of continuity and quality, with many carers not having basic skills, such as knowledge of how to hoist someone out of a wheelchair. They also sometimes fail to follow basic instructions, like reading Matilda’s 20-page care plan. 

In the past she has found herself having to give carers basic training – training the agencies should have provided. 

The Care Quality Commission, the regulatory body which oversees the sector in England, seems to have little interest in holding agencies accountable for the public money they spend. 

Matilda finds recruiting and managing her own team of carers to be her only option. It requires a plethora of skills. As she puts it: “You need to have a high level of literacy and numeracy, you need to be good at training, reviewing and doing HR, and you need to be a confident communicator. Not everyone has had the opportunity to develop those skills.”

One elderly woman I spoke to who acts as the main carer for her daughter, who is non-verbal and has learning difficulties, had similar issues with care agencies.

“When people turn up, they have often had only four days’ training, and sometimes can’t even speak English. They often arrive late, and many are tired and overworked so can’t do a good job. Their conditions need to change. They need to be given salaries rather than be paid by the hour, and given a limited number of service-users to work with so that they can focus their attention better,” she says. 

Having emigrated to the UK herself, she adds that “I’m not saying people from outside the UK should be excluded, but if they don’t have the right skills, then they shouldn’t be brought on board at the expense of vulnerable people.” 

She stresses further that “it’s not just about shovelling more money in. There needs to be a far more caring and considerate attitude from the people providing these services.”

Her lack of confidence with digital communications means that directly recruiting her own carers – essentially running her own separate business – is not an option. She is therefore at the mercy of a dysfunctional system, and wary of letting herself or her daughter be named. The agencies, she says, can be ‘vindictive’. 

A young woman based just outside of London who uses a wheelchair (and wants to be anonymous) describes how she was only given five hours a day of support by her local authority, to the point where she had to fight for more than a 15-minute appointment with a carer to use the toilet. 

“I have a chronic health condition, so sometimes my toilet needs might take longer than that time slot! Whenever I needed more hours I had to pay for it out of my own pocket. Sometimes it could be around £200 per month. When I was a student it had to come out of my maintenance loan. It wasn’t money I had.”

There are alternatives, but she was forced to go through a labyrinthine process just to apply. NHS CHC (continuing healthcare), a comprehensive programme provided solely by the health service, gives her 24/7 support, plus night care if she needs it, and travel assistance. Yet it’s common to be turned down after a lengthy application process. Her nod of approval only came through when she appealed.

She highlights how “the people assessing me are always staggered by the fact that I have a job. They have such low expectations.”

Another woman was told that she had been rejected for CHC because she wasn’t on a ventilator. She describes the ordeal as “depressing and stressful. There are no nuances or middle ground and the whole system makes you feel like you’re a burden.”

This is exacerbated by a high turnover within the social work sector, which means a lack of continuity during the assessment process and much of the legwork being outsourced to private companies – some of whom even try to assess people over the phone. A ‘postcode lottery’ further ensures that people in poorer regions are more likely to miss out. A lot comes down to luck. 

It forces people to ‘game the system’ by playing up to negative views of those with complex needs – which is the last thing many want to do. 

“My carer who was present for my two-hour meeting for CHC got me to look ‘more disabled’, making more of a show of helping me when I came out of the bathroom. When you have an annual review they treat you like a child or a prisoner on parole, which often involves keeping your mouth shut. Anything you say or do could be an excuse for them to remove your support.”

Yet it’s important to remember that if carers fall short, it’s often because they are unsupported or not a good fit. Zoe Hallam, a procurement manager based in London, highlights some positive parts of the system – including the right to have a personal budget which permits her to employ whoever she feels is appropriate. 

“I’ve had some very competent, consistent carers, and it’s good that the local authority funds them and leaves me to manage it. Also when I moved from Bristol to Southwark, I found that the process of transferring my care package was not as painful and bureaucratic as I expected. It can function well.”

She added that the 2014 Care Act has protected working people with disabilities, ensuring that people’s salaries are no longer taken into account when their level of care funding is decided. Given the recent report from the Trade Union Congress, which showed that disabled people earn 16% less per year than the able-bodied, and suffered disproportionate income loss during Covid, it makes sense not to penalise them further.

Yet it’s of little comfort to any of the people I have spoken to that a government white paper from last year promised an injection of £5.4 billion over three years into the social care budget. This is mostly because the headlines focused on the needs of Britain’s growing cohort of pensioners. 

While few would deny the importance of this, those with access needs, particularly the young, seem to have been forgotten once again. It’s still assumed that families and charities will simply pitch in with care duties, even when many might not have the time or the means. The King’s Fund think-tank described the policy proposals as a ‘serious disappointment’. 

Even the Conservative MP Robert Buckland, whose daughter was diagnosed with autism, hinted at this last year, saying that no-one in the cabinet was talking about it. 

“In the social care debate we naturally talk about elderly people,” he said, “but we never properly talk about the ‘adult with disability’ issue, and the fact that many families will have up to 50 years of caring responsibilities. I don’t think that issue has been properly addressed. If we don’t cover the question of adults with disabilities, then we’re not answering the social care issue.”  

That said, Matilda highlights how attitudes to the elderly often echo attitudes to the disabled. Many would like both groups to be neither seen nor heard.

“We rarely see older people out and about, and like the disabled, the implication is that both groups are meant to just be shut away, to exist rather than live and be reduced to their bodily functions.”

Austerity might have made things worse, but it was merely exacerbating a problem that has been around for a long time; that the needs of the disabled can be reduced to a limiting series of quantities, costs and measurements. In short, they need to adapt to the restrictions imposed by able-bodied society rather than society embracing their needs. 

Yet Matilda soldiers on, as do the anonymous people I spoke to. All are determined to resist the negative archetypes disabled people have had thrust upon them for so long. 

That said, the desire for something different should not begin and end with them. The only hope for a change in government policy is a change in wider attitudes.

“I love telling stories because I know that’s how we as humans engage with the world. Stories can be used to fight, to be heard, and if we can shift people’s thinking, then change begins,” says Matilda.

As with almost any social justice issue, there is a need to see people in a holistic way, as three-dimensional beings with hopes, thoughts and desires. The funding for the care budget should reflect that. 

“Every carer or PA I hire should be asking themselves ‘who is Matilda?’ I won’t settle for less.”

Neither should she. Neither should we.

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