Social Security Experience Panels - Seldom Heard research programme: end of life

General experiences of benefits

Participants were interviewed because they or someone close to them had been diagnosed with a terminal illness. One participant had recently lost their partner to a terminal illness. Discussions largely focused on participants' experience of accessing benefits in these circumstances. Participants reported their experiences of accessing benefits related to ill-health and disability, including Personal Independence Payment, Attendance Allowance and Carer's Allowance. However, most participants reported a lack of or very limited previous experience with the benefit system prior to the terminal illness diagnosis.

Several participants had been in employment up until their diagnosis and the benefit system was an entirely new area to them. This was also the case for some partners involved in the interviews who had given up employment to become carers for participants diagnosed with a terminal illness.

"We've both worked since we left school at 16…I've never been in a job centre and wouldn't even know how they work, to be honest."
[Carer for individual with terminal illness]

"Until then, we'd never claimed a thing in our lives."
[Individual with terminal illness and their carer]

This lack of experience provides important context for a number of the barriers and enablers to accessing benefits described by participants in this strand of the Seldom Heard research programme and outlined in this report. Additionally, it means participants were not able to provide a wider view on the system, changes over the years or comparisons between different benefit types.

Support networks and resources

The vast majority of participants reported that third sector organisations had been crucial for enabling them to access benefits and were clearly appreciative of their help. The organisations most commonly mentioned by participants were unsurprisingly Macmillan Cancer Support and MND Scotland given their key role in recruitment for the interviews. However, a couple of participants did suggest that the organisations they were engaged with should not have to be so heavily involved in providing support and advice related to benefits. One of them suggested that government should be responsible for this instead.

"And, although they've been great, they are a charity. It does seem like there should be a government agency or someone who can give you the advice, rather than a charity…It's an invaluable service that they're (Macmillan) providing but it's a pity that it's got to be a charity rather than an organisation that is government sponsored, or whatever."
[Individual with terminal illness and their carer]

A few participants also reported being given wider elements of financial and practical support by support organisations. For example, some had received help to access other grant funding or entitlements (such as Blue Badge parking permits).

Many participants noted that their interaction with a support organisation was a result of being signposted by a medical professional or through meeting a support worker in a medical setting.

Only a few participants mentioned getting advice about what they would be eligible for and how to make a benefits application from the Department for Work and Pensions (DWP) or other UK Government departments.

Some participants mentioned receiving advice about benefits and support from council employees. One participant noted exploring options available after hearing though word-of-mouth from other people with the same condition that there may be support available. Another described receiving a letter from their employer at the end of their period of sick pay which said they might be entitled to 'benefits', but said this was fairly vague.

Finally, it is worth noting that some participants were also trying to arrange other sources of support that they required as a result of their health condition. This included home adaptations, and getting wheelchairs and accessible vehicles. Additionally many participants also spoke of the need to attend medical appointments or undergo operations. In some circumstances, these may represent additional demands on individuals' time and energy alongside navigating the benefits system, or also have financial implications for them and their relatives.