Leia Ben Naceur, Research Community Officer, Money and Mental Health

Carers Week 2024: How to better support those caring for people with mental health problems

14 June 2024 

  • Carers Week is a week dedicated to celebrating and raising awareness of the work done by carers across the UK. 
  • Members of our Research Community have shared their experiences of being carers for people with mental health problems.
  • Many spoke about how rewarding and fulfilling caring can be. Yet they also shared the range of difficulties they can face in accessing help and financial support, and the significant impact this can have on their financial and mental health. 
  • These can range from struggling to appropriately support someone to manage their finances, lacking sufficient financial support and formal care being inaccessible.
  • Carers provide vital support, but caring should not come at such a cost to their wellbeing. Making it easier for them to care, and providing them with the support they need, is crucial to improving the caring landscape. Carers must be listened to within policy-making and service design.

As some of you may know, Carers Week is a week dedicated to raising awareness of and celebrating the invaluable work done by carers across the UK. This spotlight on carers couldn’t have come at a more important time given the recent Carers Allowance overpayment issues, which saw thousands of carers faced with sudden repayment orders due to unknowingly breaching earnings rules. We’ve also recently seen Ed Davey, the leader of the Liberal Democrats, speak openly about his experiences caring for his mother and son and the impact this has had on his political career.  

The theme for this year’s Carers Week is ‘putting carers on the map’. As our Research Community is not just made up of people with lived experience of mental health problems, but also those who care for them, we want to contribute to this conversation by sharing their experiences.

Challenges from the start

Both caring for a loved one and being cared for can bring people closer together, and many carers shared how fulfilling, rewarding and special it is. But the positive sides of caring can often be overshadowed by the range of structural challenges and barriers carers can face.

Often, the difficulties start far before someone has assumed the role of carer. It’s not uncommon for unpaid carers to try and access support for their loved one through local councils. However, to access any funded care, a person must present with very specific caring needs that require support with activities on a day-to-day basis. This can make accessing formal care for people with mental health problems challenging, as care assessments can be subjective and often don’t account for symptoms and support needs which may fluctuate over time due to a mental health condition.

Caring and financial difficulty

Carers shared that sometimes, even when they can access support, it doesn’t always meet the specific needs of the cared-for individual. For people with mental health problems who need help with their finances, support needs can be inconsistent, requiring a close friend or family member to sometimes step in and manage their money on their behalf. It is often difficult to provide this kind of support without a formal third-party arrangement, like a Power of Attorney. But a Power of Attorney can be difficult to acquire and might not always be necessary or appropriate given a person’s fluctuating support needs. 

We also heard how carers can face significant financial difficulty due to their caring responsibilities. While some people can access Carer’s Allowance, a benefit to help people with the costs of caring, this can fall short of providing adequate financial support. And not everyone is eligible. In order to receive Carer’s Allowance, you need to provide 35 hours of care a week, which can make earning a living wage difficult. Yet many carers need to work to cover their living costs, which can result in some unknowingly exceeding the earnings cap of £151 a week. Carers in our Research Community have told us about how they’ve struggled financially to meet their own needs and provide support to their loved ones.

“I am paid monthly, on the last Friday of the month. A few times a year I go over the earnings threshold so I had to ring to tell them. This would stop Carer’s Allowance payment for a whole month, not just a week. That was such a big loss… It’s not fair.” –  Expert by experience

The impact of caring

Caring can look very different for each person, but many carers in the UK provide 20 hours or more of care alongside their jobs. This can place carers under strain, and carers report higher rates of long-term health conditions than non-carers. 

Many carers in our Research Community told us that caring, and the challenges involved, have had a negative impact on many aspects of their lives, including their finances, physical and mental health, and their social and working lives.

“Increased level of stress as on 24/7 support… Relatively little sleep and no relaxation. Constantly chasing support organisations, e.g. NHS to actually do their job.” – Expert by experience

What can be done to better support carers?

But these negative impacts are not inevitable. Insights from our Research Community suggest that when carers are supported in some way – either emotionally, financially or through sharing responsibilities – they can be alleviated. And the unpaid labour of carers is invaluable, saving the economy billions of pounds annually. It is therefore vital that any interventions to improve the caring landscape involve not only increasing financial support, but enhancing access to practical and emotional support services too.

The importance of putting carers on the map

Many carers shared how rewarding and gratifying caring can be – these positives should no longer be overshadowed. Carer’s Week serves as a critical reminder of the need to acknowledge and support this tremendous effort of carers, to enable them to provide care at no cost to their mental or financial health. It’s time we turned the dial and truly valued their contribution and amplified their voices and addressed their needs. 

By actively listening to carers and incorporating their feedback into policy-making and service design, as we do with our Research Community, we can create a more responsive and supportive environment. 

If you’d like to share your experiences of caring for someone with a mental health problem or of your own experiences of mental health problems, sign up to the Research Community here.