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

Enablers and improvements for the benefit system

Positive experiences (enablers) around the benefit system were also identified through the interviews. Some participants also shared thoughts on how parts of the system can be improved. Key enablers and potential improvements are outlined below. Many of these points drew directly from the barriers experienced by participants outlined in the previous chapter.

Key role played by third sector organisations

Third sector organisations were reported as a key enabler for participants trying to access financial support through the social security system. Organisations helped most participants understand that they were entitled to support and what specific benefits they could access.

Several participants described the crucial role support organisations played in assisting them to complete application forms or filling them out on their behalf. As outlined in the barriers section, without this support some participants suggested they would have been unable to make a successful application.

After Macmillan had completed a new application, the participant had been sent a copy to read and sign in her own time which was much more relaxed and less stressful, she explained.
"Oh, it was brilliant - she [the Macmillan nurse] knew how to go about it. What questions to answer, what not to answer, not all this kind of confusion, I mean, I was at a total loss."
[Individual with terminal illness]

"[The MND Scotland] representative came down to the house and helped us fill in the form. It was quite lengthy but it was fine. It was far easier with them being there. We'd looked at it and just felt it was a bit daunting so we contacted the lady there and she was very helpful…"
[Individual with terminal illness and their carer]

One participant recalled that they had been helped with the application form by a Welfare Rights officer from the local council. Similar to those working with third sector organisations, this enabled them to complete a task they said they could not have done on their own.

Third sector organisations were also credited with helping some participants navigate the requirements of the benefits process more generally. For example, one participant described how they were advised that they were not obliged to attend further appointments to discuss their Personal Independence Payment claim after the initial interview, despite receiving requests from the benefits agency.

A few participants also mentioned being prompted by a third sector organisation to gather evidence about their condition and prognosis from their GP in order to support their benefits claim. When asked what evidence had been submitted alongside their application, most participants had not heard of a DS1500 form^[2] or were unsure if this was definitely the form which had been provided. This suggests that participants were not always clear on the specific details of official documents required to support a claim and relied on third sector support to navigate the process. This could represent a barrier for anyone trying to go through the benefits application process themselves.

"You got a letter from the doctor to forward and took that to Macmillan. Macmillan told me to get that, a letter with my prognosis, and we gave that to Macmillan."
[Individual with terminal illness and their carer]

Improved information about benefits

Most participants reported a need for clearer and more readily available information about what benefits are available, eligibility rules, and how to apply. Many felt a single source of information such as a leaflet or pack would be helpful.

"It would be handy if, when you've got a disability, if there was an information pack sent out by DWP that told you what you may and may not be eligible for. And, I know you can look things up online, but it is a bit of a minefield. It needs to be explained in plain language, and not everyone can access the computer..."
[Individual with terminal illness and their carer]

A couple of participants suggested that people diagnosed with a terminal illness need a package of information with financial information provided alongside rather than simply in addition to medical and other practical advice. This would help them navigate the range of issues they might face and access suitable support.

"For me, in an ideal world, the thing that would have made a massive difference is having a multi-disciplinary package of information from the get go. I honestly think that would be life changing for people and that would have let me concentrate on the time that I had left with my husband."
[Individual who had lost partner to terminal illness]

More proactive financial advice from health professionals

Several participants felt that doctors and other health professionals could play an earlier and more proactive role in providing benefits information. This could be through the provision of an information pack, as mentioned above, or signposting to organisations who could help. A few mentioned that information about support available would have been helpful at the point of diagnosis specifically.

"When someone, whether it's an accident or an illness, if there was an information pack just automatically given to them, I think that would be very helpful. If you're at the GP and you're seeing them anyway, it would be good to be given something then."
[Individual with terminal illness and their carer]

"In hospital, maybe after the op, give me details there - I thought the doctors might be better qualified to tell me, give me some leaflets or something to let me know what I qualified for."
[Individual with terminal illness]

Greater awareness raising about benefits

One participant suggested that leaflets in hospital waiting rooms would be a good way to generally raise awareness of benefit entitlement amongst people with health conditions. Another participant called for more widespread dissemination of information about benefits in public settings (such as health centres or libraries) or through the media. They noted that different sources might be accessed by different groups and so a diverse approach might be useful. Beyond this, no further views were offered on how information about benefits could be promoted more generally.

Desire for a 'fast-tracked' process

A couple of participants specifically expressed a desire for a fast-tracked process for accessing benefits in the context of a terminal illness. It is unclear whether this is because they did not recognise that such a scheme is in place, or simply felt things should be faster still.

"Things need to be speeded up a bit and probably if things could be fast tracked for people who do have terminal illness that would be better. I know there's a lot of different terminal illnesses, and for some you can live for a long, long time. But for others, you can't. So being able to fast track is really important."
[Individual with terminal illness and their carer]

Specialist and empathetic benefits staff

A few participants highlighted scope for benefits staff to have greater awareness of the issues faced by individuals and carers dealing with a terminal illness diagnosis or bereavement. Participants suggested this would help ensure they were treated sensitively.

One participant described how appreciative they were that support workers in third sector organisations had treated them so well. This was noted as example of contact and support which had worked well.

"It wouldn't be bad if Social Security Scotland had at least one member of staff who had specialist training in dealing with situations like this. And, if someone's role was to deal with people who had bereavement and grief issues, that couldn't do any harm."
[Individual who had lost partner to terminal illness]

Continuity when interacting with benefits staff

Two participants suggested having a single point of contact in benefits agencies when making applications would be useful. This would help cut down on having to repeat sensitive information about their circumstances to different people on multiple occasions. One described how this continuity might help in cases where people were making claims for multiple benefits in particular. Another participant suggested that generally minimising the sources of communication and people involved in care and support provision may be appropriate.

"Someone that knows your circumstances, so you don't have to keep repeating yourself. Someone who knows from the word go what you're going through and can help you through the whole thing."
[Individual with terminal illness and their carer]

Varied communication preferences

Participants offered a range of views on communication preferences. Taken together, the feedback gathered indicates a range of needs or desires which vary across different types of correspondence, circumstances and personal preferences. This suggests that multiple channels for benefit-related communication and information are important.

A couple of participants noted that they would prefer face-to-face communication for initially finding out information about benefits and eligibility. For one participant, this was particularly important in the context of a terminal illness or bereavement as it would offer them the chance to make sure they got all the information required.

"Having face-to-face contact in these cases makes a world of difference. And I don't think that's any different depending on the relationship. Anyone who you love and care about really, it's about clarity. And the thing that face-to-face can do that a letter can't is that you can respond. You can ask questions and get more clarity that way."
[Individual who had lost partner to terminal illness]

However, several participants expressed a desire for benefits-related correspondence, such as decision letters and updates, to come in the form of letters. This would provide a record of what was communicated, and also give participants the chance to read things multiple times and digest information. One participant noted that letters are accessible to all age groups and noted that they felt more personal than emails.

A few participants suggested that letters could be improved to offer more clarity and explanation of the information being communicated and options available. However, this was not a consistent view with some other participants noting that letters received had been clear enough for them.

"When you've got something in black and white, you've got proof."
[Individual with terminal illness and their carer]

The respondent expressed a preference for receiving written letters rather than phone contact because "Sometimes you need to read them 2 or 3 times to understand what they are saying".
[Carer for individual with terminal illness]

No participants expressed a specific desire to access benefits information over the internet. In fact, some participants reported having limited internet access and IT literacy skills. This meant both found benefits information available online less accessible.

Interest in home visits

A couple of participants mentioned a preference for home visits for benefits-related issues or contact with government agencies more generally. In both cases, this was related to their health condition.

"It would be better if people came to us now, instead of us having to go to appointments, because [name] just isn't confident leaving the house, even though support from our neighbours has been good, she wouldn't want to go into town."
[Individual with terminal illness and their carer]

Greater advice for carers about their financial future

Finally, one participant highlighted a desire for benefits agencies to offer more reassurance and advice to carers for individuals with a terminal illness about their longer-term finances. They felt this would help reduce some of their anxiety. This reflects the uncertainty noted by some carers about the future of their benefits as discussed in the 'Barriers' section of the report.