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

Key barriers experienced with the benefit system

As End of Life research participants described their experiences of navigating the benefits system, a range of challenges were highlighted. Key themes which could represent barriers to people in similar circumstances accessing benefits in future are summarised in the section below.

Lack of awareness about benefit eligibility immediately after diagnosis

One of the most significant barriers to accessing benefits amongst participants, at least initially, was a general lack of awareness they could be entitled to financial support following a terminal illness diagnosis. This may be in part due to a participants' limited prior experience of the benefits system. However, in this context, it is notable that many participants complained about not being given financial advice as part of medical appointments either at all or at any early phase. This meant some participants with a terminal illness and their families did not seek financial support for some time after their diagnosis. This is despite their health situation being the trigger for their need and eligibility for financial support.

A couple of interviewees described how they were eventually signposted to third sector organisations for advice. This came after a number of medical appointments or in response to them mentioning financial worries to medical staff. Relatedly, two participants explained how they did not give much consideration to financial concerns themselves initially as they focused on their, or their partner's, health condition.

"I mentioned to the nurse when I was at my appointment just before Christmas that I was worried about money, mainly my rent really…I had been in the hospital on and off since October but that was the first time I said anything. And then she put me in touch with [name] from Macmillan and she put us through what we needed to do and that."
[Individual with terminal illness]

"Following the diagnosis, so many practical things kick in that you're just swamped on every level while you're also emotionally stunned. There's no good way or time to give people financial advice when someone's dying, but earlier on would have been better. As it was, we just left the hospital each time with nothing."
[Individual who had lost partner to terminal illness]

"It was a few weeks after the operation that we started to think about money. At the time, money's not really on your mind. At the time, you're not thinking - you're thinking about health and thinking about other things. Obviously, although you need money and you need something to survive on, and that's always something to worry about, you try not to worry about it immediately."
[Individual with terminal illness and their carer]

Challenging interactions with government agencies about benefits

Some participants reported challenging interactions with government agencies when trying to find out about or access benefits. The issues centred around not getting the information required or being treated insensitively.

Only a few participants reported trying to initially find out about benefit eligibility from the DWP directly. All of them described this as challenging. One "spent hours looking at government websites" and had to make several calls to get clear advice about what they were entitled to. The other two participants ultimately had to get support from a third sector organisation to clarify their eligibility despite reaching out to DWP. One of them recalled particular difficulties navigating DWP's automated phone line and eventually being directed online, despite having limited internet access.

"The first time I tried to get in touch with the DWP, it's designed to put you off. Well, I spent all morning trying to look up numbers and they kept trying to direct us online. Now, I don't have a computer. I've got an email address on my phone, but I'm of an age where I'm not really that tech savvy. So, doing things online isn't for me…a recorded voice comes on and says "The information you require is available at MyGov.UK and you're just cut off. It always ends with "Thanks and goodbye", and it just cuts you off."
[Individual with terminal illness and their carer]

A few participants also described their experiences of face-to-face appointments with DWP staff in job centres in the process of accessing benefits. A small number of participants reported that these interactions were generally fine. However, another participant had a particularly difficult experience where the staff member they spoke with was "really dismissive", made them feel "like a scrounger" and treated them insensitively when they disclosed the nature of their situation. That said, a second scheduled visit with a "more sympathetic and empathetic" member of staff was reported much more positively.

Experiences of feeling judged or being treated insensitively were also reported by other participants who had phone contact with the DWP and Her Majesty's Revenue and Customs (HMRC) respectively about financial support. However, aside from these experiences of difficult interactions, participants did not proactively mention stigma or feeling judged as a more general barrier which deterred them from accessing benefits.

"The [HMRC staff member] didn't present herself very well and was very matter of fact.…participant ended up having to speak to them on the phone and she ended up being upset the whole day by what they'd said. Just that because she was going to die, it meant there was a different way of doing things. Just to say it like that - that you're going to die - doesn't seem right."
[Individual with terminal illness and their carer]

Lack of certainty about other support potentially available

Even where participants had now been supported to access benefits, there remained a degree of uncertainty about other channels of financial support they could be entitled to. Some reported how they had heard of some benefits but did not think they were eligible as it had never been mentioned to them. This suggests participants relied heavily on advice about what specifically they should apply for. This could represent a barrier if advice given is not comprehensive, accurate or on-going.

They felt that they might also be eligible for council tax exemptions or reductions, Universal Credit and Employment Support Allowance, but they were not sure and also not sure who to ask.
[Individual with terminal illness and their carer]

The respondent had heard of PIP but felt she didn't qualify and it had never been mentioned by the Macmillan nurses, so she only pursued Carer's Allowance.
[Individual with terminal illness]

Application forms too challenging to complete without support

More than half of interview participants highlighted that they found completing benefit applications challenging. Reasons outlined tended to centre around the forms being too long and complex to complete by themselves. Participants described them as "daunting", whilst another said they were "intimidating". For some, this seemed to be related to a lack of experience of, or familiarity with, filling in benefits application forms in the past.

Some participants were uncertain which parts of the form they should complete in their circumstances of living with a terminal illness. Furthermore, one participant said that the progressive nature of her husband's terminal illness meant summarising their challenges and needs at any one point in time was difficult.

As a result of these challenges, most participants had received help from a third sector organisation to complete and submit the forms. Two participants noted that they felt they would not have been able to make a successful benefits claim without this support.

The couple had attempted to complete the Carers Allowance application form, but found it unmanageable:
"Up to that point, I had still been getting sick pay from work, and PIP. Again, I got the application form which was absolutely massive. I started doing that, and it asks you a lot of stupid questions, and you try and thingmy it out."
[Individual with terminal illness and their carer]

"It was like a book. Someone with experience is much better to fill these things in. The woman from Macmillan took a pen and crossed out pages just saying, "That's not relevant to you", but we didn't know…"
[Individual with terminal illness and their carer]

Other feedback on the wider application process

Some participants thought the timescales for processing applications was too long. Both noted that the context of them or their partners living with a terminal illness meant time was limited and so applications being processed quickly is important.

"But it was quite a lengthy process. Um, I realise that with some illnesses, and with the type of illness that I've got, it is terminal but you're getting worse all the time and you don't really have time to wait on the things that need doing."
[Individual with terminal illness and their carer]

A few participants noted challenges or negative experiences with meeting the wider needs of the benefits application process. For example, the need to travel to benefit assessments or for multiple appointments was noted as being difficult where mobility becomes more challenging as a result of a terminal illness.

One participant said having to verify their identity in order to apply for benefits was "stressful". The need to find specific documentation and share this with DWP was seen as an unhelpful demand of their time in the circumstances. This requirement was due to the fact they had not applied for benefits before. However, as this applied to many participants in the terminal illness based interviews, it could represent a potential barrier more generally for people in these circumstances accessing benefits.

Having to attend only one appointment to verify identity, complete medical assessments, etc. would have been better than multiple meetings, especially given her husband's mobility challenges and her own working patterns (i.e. she had to take time off to attend meetings with her husband).
[Carer for individual with terminal illness]

Link between financial and health needs

More generally, several participants mentioned facing financial and practical barriers when attending medical appointments associated with their condition. This included trying to arrange access to adapted vehicles and wheelchairs which would help them get around more easily. One participant noted that the need for their partner to have suitable transport and other practical support when attending appointments meant they had given up work to become a carer. Their partner noted that having additional funds for getting taxis to appointments would enable them to maintain independence.

Specific challenges experienced by carers

Finally, a few participants raised concerns or uncertainties about what happens with benefits for carers once someone with a terminal illness dies and how this would impact their finances. For example, one participant outlined the challenge this posed for them in trying to balance short- and longer-term financial security. They noted that they were advised by the DWP they might be better to give up work and claim for carer benefits. However, they thought this might put them in a more difficult position in terms of employment and finances in the future.

Two participants highlighted a lack of knowledge about how eligibility for Carers Allowance was affected by them already receiving the state pension. This suggests information on the interaction between different sources of support could be clearer.

"A few times, I got the impression that because of my job, we couldn't get anything, and I wondered if my husband would be better off if I wasn't working."
[Carer for individual with terminal illness]