About Care Full

Care Full is submitting a response to the consultation: Make Work Pay: Consultation on employment rights for unpaid carers and parents of seriously ill children.

Care Full is a lived experience, not-for-profit organisation which believes we need to create an economy that enables us to care for ourselves, one another and the planet.

Care Full was formed in 2024 by two unpaid carers who recognised that the root cause of the challenges faced by unpaid carers was the design of our economy which marginalises, devalues and undervalues care.

As such we believe that for unpaid carers to have a good life, we must work to make care foundational to our economy as we made health 80 years ago.

The Case for Change

Moving beyond the boundaries of social care, we must look at making fundamental changes to social security and paid workplaces to ensure unpaid carers do not incur a financial penalty.

This consultation offers an opportunity to address the inequality experienced by unpaid carers (those caring for anyone of any age who due to ill health, disability, frailty, mental health or substance issues cannot manage without them) by developing workplace policies that meaningfully enable those who undertake unpaid care.

At present there are 3 million unpaid carers who undertake paid employment. Previous research found that approximately 600 people leave paid employment each day as it is not possible for them to undertake paid and unpaid labour together.

Research undertaken after the introduction of the Carers Leave Act (2024) found that 47% of unpaid carers are considering reducing their hours or leaving paid work suggesting that the current offer (five days unpaid leave) isn’t fit for purpose.

The contract between employer and employee has grown increasingly out of balance, changes in the way we work are needed to meet the needs of all of us. It is widely recognised that the UK has some of the lowest sick pay. Paternity leave and carers leave are inadequate and at present there are a range of campaigns being undertaken to improve leave from paid work for different groups. It would be beneficial to explore how we actually redress the balance between our paid work and our wider lives so that paid work enables our wider lives.

At some point all of us will need to take time away from paid work for caring reasons, at present those who must do this due to care for another adult are disproportionally impacted.

Enabling Care in the Workplace

The consultation’s starting point of information and identification places too much onus on individuals to identify they have needs, articulate those needs and for employers to be sympathetic to those needs. There is a need to begin at a starting point of equity that paid and unpaid labour have parity in our economy and as such we must create systems that enable the unpaid labour undertaken for the care of others (in all its forms). In addition, the question set out in the consultation pertaining to who should be eligible and for what reasons raises concerns of creating hierarchies of care and marginalising some of those who are already stigmatised due to their caring role (particularly those caring for someone with a severe mental illness or substance misuse issue).

The framing of the consultation which separates unpaid carers from parents caring for seriously ill children places this front and centre. We must move away from this hierarchy of care approach if we are to address the complexity and marginalisation of unpaid care.

The reasons unpaid carers need time away from paid work can vary in intensity and need over a long period of time, it is important to develop a model that builds flexibility and equity into the model. A number of European countries have adaptable, flexible and financially supportive models that recognise that over time many carers may experience periods of intensity in their unpaid caring role. Any leave policy needs to reflect this, however, we recognise that some that intensity may peak if or when the person they care for is on a palliative care pathway – at this point it is advisable to build additional support into the carers leave model. Belgium’s model is worth exploring especially as it includes the options for longer periods of leave, intermittent leave (e.g. for appointments) replacement income from unemployment insurance. Belgium is not the only example from Europe that have developed carers leave policies that are more flexible, robust and equitable than the UK.

Evidence from Lived Experience

Care Full is a lived experience led organisation, we are two (former) unpaid carers with diverse experiences of care. The formation of our organisation was (in part) to push for a radical change to the provision of support, services and the resources needed to enable unpaid care in our economy. We are responding to this consultation in this manner because the framing of the questions are inadequate to the need for change in our society. Unpaid carers are one of the groups most impacted by inequality in our society, more likely to experience poverty than their peers, in addition they experience an income gap compared to their peers and where people live in deprived areas they are more likely to be undertaking more intense caring roles, as well as parent carers having a significantly higher risk of suicide than their peers.

As such, we must move beyond offering merely unpaid leave to unpaid carers, the availability of carers leave must be:

• Adequate to the needs of the carer with flexibility built in
• Adequately compensated to prevent carers experiencing financial hardship
• Recognises the complexity of care and the stigma that comes with it.

The reason we propose this is drawn from examples from our lived experience as carers:

• In one week one of the people we cared for had three appointments on three different days, these appointments included treatment. The hospital was not local so the need to be away for the whole day for each appointment was a necessity.
• For a period of three weeks, one of the people we cared for could not be left alone, there was no social care package in place so it required someone to move in with them. Our employer’s suggestion was that we get signed off by our GP.
• In the period of one week, one of the people we cared for had three emergency visits to Accident and Emergency, each lasting at least 12 hours.

As you can see care is complicated, unpredictable and demanding of time. Unpaid carers leave the paid labour force at a rate of 600 per day, implementing a more progressive approach to paid carers leave (underpinned by improving the financial support package available) would enable more carers to undertake and remain in paid work.

A Care Full Future

As the new prime minister brings social care to centre stage, it presents an opportunity to bring wider policies related to unpaid care up to date. For too long unpaid care has remained actively marginalised by our economy, as a result our workplaces, our employment model and our main income model does not sustain care – whether those who benefit from it or those who provide it.

When the prime minister announced the fast tracking of the Casey Commission and cross-party talks he began his speech with the question: “how has it got so difficult to care for each other?”.

It is this question that should frame our exploration of the changes to our economic model – including our workplace support mechanisms. For any new adult social care model to be successful, recognising the existence of unpaid care and how it can be enabled, supported and recompensed is crucial.

At Care Full we ask, that instead of assessing whether small changes will be adequate to facilitate an inadequate system to continue to limp along, whilst unpaid carers continue to struggle; you take a bolder approach and design a system fit for the future that meaningfully enables and support unpaid care and all of those that provide it equally, without hierarchy, with clarity and with equity.