Falling short: how social security needs to change to meet the needs of people with cancer

In the coming weeks and months the Government is expected to publish a Green Paper outlining reforms to disability benefits. Macmillan have been working with people with cancer to understand what they want and need from a modern social security system. The findings — outlined in a new report entitled Cancer and Social Security — make clear that the current system needs to change to meet the needs of people with cancer and identify some key challenges that the Green Paper needs to address.

Too often, the benefits system doesn’t meet people’s needs

The financial impact of cancer is, for many people of working age, overwhelming. They are faced with a massive loss in income — often due to having to give up work — and increased costs, all while maintaining financial commitments like mortgages, rent or supporting their families. As a result, many rely on benefits like Universal Credit, Employment Support Allowance and Personal Independence Payment.

In theory, these benefits are there to help replace lost income and cover the extra costs — like paying for travel to and from hospital — that people can face after their diagnosis. More broadly, they are there to provide people with support and security at a time of crisis.

But all too often, Macmillan’s benefits advisers see examples of the system not providing the support it should. People with cancer tell us that they find navigating claims processes complex and draining, and that their claims are often blighted by long delays or even rejected with no clear justification. Even when claims are successful, the support proved is inadequate for many.

What needs to change?

Macmillan believes that social security can and should meet the needs of people with cancer and that, to achieve this, the system needs to be built around their experiences and priorities. Our new report Cancer and Social Security is based on conversations with people with cancer from across the UK. In those conversations we explored what people with cancer, particularly those of working age, want and need from social security and the extent to which those expectations are currently being met. The result is a series of principles which outline what people with cancer told us the system should deliver for people in their situation, and shine a light on where it’s currently falling short.

Enough support

One of the first issues we spoke to people about was the level of financial support the system should deliver. They felt strongly that benefits should provide enough money to maintain a reasonable and dignified standard of living, covering the cost of day to day living, including the extra costs that come with a cancer diagnosis, and enabling people to lead physically and mentally healthy lifestyles. But — crucially — people also told us that social security should not just cover ‘the basics’, it should cover things that promote wellbeing and help them cope with the impact of a cancer diagnosis on their quality of life.

Sadly, many of those we talked to who relied on benefits for financial support reported that they struggled to make ends meet. They often weren’t able to cover the costs related to their diagnosis and some reported taking out credit cards, loans, or relying on support from family or friends in order to cope. Some spoke of just ‘surviving’ and not being able to afford anything beyond housing costs, bills and groceries. Others felt stigmatised when they did manage to use their benefits for things that improved their wellbeing.

A need for speed

For many, the financial impact of a cancer diagnosis is immediate. The people we spoke to emphasised the importance of social security working quickly in these initial stages. Unfortunately, this often wasn’t the case with individuals facing delays that were built into the system — like the five-week wait for Universal Credit — or waits resulting from administrative errors or other problems.

Working properly

A recurring theme of our conversations was the importance people with cancer placed on social security being easy and obvious to access, particularly as many were going through treatment when they first apply. For some, this could not have been further from their actual experience — they told us of an almost impenetrable barrier of complexity, which they often only managed to overcome with help from charities like Macmillan.

How the system should ‘feel’

As well as talking about the level of support social security should provide and how the system should work, people with cancer spoke to us about how they though the system should treat people like them. They spoke of the importance of the expectations placed on them — during applications, assessments and other touch points — reflecting their real-world capabilities. Some spoke about the positive impact where processes were flexible and understanding of their capabilities — for example the qualification of many people with cancer for a higher rate of Universal Credit or Employment Support Allowance without the need for a face to face assessment. However, others — especially those on Universal Credit — spoke of the stress and difficulty caused by having travel to a Jobcentre or submit a level of information or evidence that was beyond their physical and mental capabilities at the time. Some found assessments difficult or even distressing.

People with cancer told us the they wanted to feel like the system was on their side. They told us that that they wanted to feel like they could trust the system and — crucially — like they were trusted by it. More often than not, people reported having to ‘fight’ for the support they were entitled to. They consistently told us that the language and approach used by some staff created a culture of distrust and left them feeling like they had not been treated with respect.

A need of widespread reform

In the Queen’s speech the Government confirmed its intention to publish a Green Paper on the reform of the disability benefits system. Originally scheduled for last year but delayed due to the Covid-19 pandemic, the Green Paper represents an opportunity for widespread reform. It must be ambitious in seeking to build a social security system that meets the needs of those who rely on it. On the level of support, the Government should ask searching questions about whether the system currently provides enough to those in need. On the design of the system — unlike previous rounds of welfare form — the voices of people who use it should lead the debate.

When we spoke to people with cancer about the overall guiding purpose of social security, they told us it should support people to live the best life possible — not just to survive, but to live well. From the findings detailed elsewhere in Cancer and Social Security, we can see the gulf that currently exists between this aspiration and the support people with cancer actually get.