Qualitative study

Some quotations in this chapter have been reproduced from Howel et al.2 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution International license (CC BY 4.0), which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.

Introduction

This chapter presents the findings of the qualitative study embedded within the RCT. We begin by presenting the sociodemographic characteristics of the qualitative study participants, including household members of trial participants, and professionals (see Tables 20–22). We then present findings on the acceptability of the research design and intervention, followed by those on the impact of the domiciliary welfare rights advice service, as experienced by trial participants and professionals. We then focus on the mechanisms of action and unanticipated consequences of the intervention, before finally examining the impact of external factors, such as cuts to the public sector, on this type of service and its delivery.

The findings are organised around the key themes identified during interviews and are presented for both trial and professional participants. Our presentation of the findings is interspersed with verbatim quotes to illustrate particular points, pseudonyms are used throughout, and any identifying information (e.g. place names) has been removed to preserve anonymity. The participants were made aware that their comments may be used in publications, and informed consent for this was obtained.

Participant characteristics

Tables 20 and 21 present social, demographic and welfare benefit outcome data for the 50 participants in the embedded qualitative study, 30 intervention (see Table 20) and 20 control (see Table 21), all of whom received the intervention as planned. Eight partners were also interviewed alongside trial participants, as indicated in Tables 20 and 21. Thirty-one women and 19 men took part, with six female partners and five male partners also interviewed. The age of the trial participant at the time of the interview is given. The average age was 72 years, ranging from 61 to 86 years. Most of the interviewees were living alone (widowed, n = 19; divorced/separated, n = 8; single, n = 4), with 19 living as part of a couple. Trial participants came from throughout the North East region and from urban, rural and semirural areas; the IMD scores ranged from 7.43 (least deprived) to 71.74 (most deprived). The trial participants were interviewed after receiving a welfare rights intervention and, for those in receipt of a financial or non-financial award, the interview took place after the award was received. The control group trial participants took part in qualitative interviews after their 24-month wait, and following intervention receipt.

Table 22 presents information about the 17 professional participants in the study. Thirteen women and four men were interviewed from the following sectors: welfare rights, public health, primary care and the civil service. Among the 10 interviewees from the welfare rights sector, four delivered the intervention in the trial, while the remaining six had management or strategic roles within that sector.

Acceptability of research design and intervention

Intervention recruitment

Trial participants, alongside professional participants, indicated that being contacted by Newcastle University through their local GP surgeries encouraged them to take part in the study, as both were seen as reputable organisations:

I think the university stamp on the envelope, I think it had some clout on me, you know . . . must be something important . . . made a great deal towards filling it in and taking part.

The involvement of GP practices appeared to be particularly key to recruitment, as a result of the trust placed in individual GPs by, and the important place of general practice within the lives of, older people, particularly those with health problems:

I trust them [local GP practice] . . . I’ve been with them, well, more or less since I was born . . . I think, well, I’ve been with this practice that lang [long], you got to trust somebody . . . if a letter just comes through the door that says gan [go] on it, that would have went in the bin, I wouldn’t have bothered but because he said, you know, we want you to have a go at this, I thought fair enough, he’s a doctor, he knows what he’s talking about and I just went along with it . . . this way I think was alreet [alright].

One of them [trial participants] told my colleague that they signed up because it was the doctors suggesting it, they were keen to be involved in something the doctor suggested. So they didn’t sign up because they wanted to know if they could get any benefits, they signed up because the doctor has said ‘oh could you participate in this?’, so they did.

Trust in the institutions involved further assured trial participants that the sensitive information collected for the study, particularly regarding their health and finances, would be kept confidential and secure:

A further factor in recruitment was that the study aims were deemed worthwhile and trial participants appreciated taking part in a project on the potential disadvantages faced by older benefit claimants:

I felt that it may benefit other people like me and other people that don’t know the system and that are struggling making ends meet, it might give them a helping hand.

I think my interest [in the study] was the fact that they were gonna [going to] start putting more information into places like doctors’ surgeries where people who would need the information could get it easier . . . There’s a lot of people out there who need information and that’s just not been targeted to the right people . . . old people only talk to certain people, they might talk to a doctor or a nurse because they are people they see on a regular basis, and if this kind of thing was targeted over doctor surgeries or somewhere where they go like that . . . they might help . . . I thought it was worthy in that respect.

I think it’s always a good thing to do a study to find out what’s going on . . . it is absolutely fantastic . . . anything that highlights a particular group of people to get advice.

Only one trial participant expressed that they felt motivated to take part owing to the personal benefit of receiving the welfare rights advice session:

I just thought well it’s only a bit of me time and they’re ganna [going to] tell you what you mightn’t be getting . . . So it was worth it.

Other trial participants reported being unaware that they might financially benefit from getting involved in the study:

I didn’t realise what was going to happen . . . They didn’t tell us that . . . [they] just asked me questions that was it. I never thought anything about money or anything like that.

Randomisation

Most trial participants felt that the randomised (wait-list) control trial design of the Do-Well study was an acceptable approach, as the process was clearly explained and they recognised that they would not have received the intervention at all otherwise. Overall, they felt that the study was clearly explained to them so they knew what they were signing up for before becoming involved in the research. They also felt that the randomised controlled method would enable the effects of the intervention to be evaluated:

Control group trial participants were free to seek independent welfare advice at any time during the study period, and they were specifically asked whether or not being part of the study had encouraged them to think about seeking welfare rights advice elsewhere. Although some interviewees acknowledged that they were aware of welfare rights services, none of our control interviewees reported seeking independent advice prior to receiving the intervention after the 24-month follow-up interview.

Some trial participants highlighted the importance of knowing that they could seek advice independently from the study at any time if they needed to:

If I had been desperate, really desperate . . . somebody would have sorted us out somewhere . . . I could have gone to the council and stuff like that.

Wasn’t bothered [regarding being in the control group], because you can go to Age Concern and the welfare rights to see about your benefits and get them all explained. But I never bothered.

Although trial participants reported that the study process had been explained and initially agreed to, many went on to admit that they found the process difficult to remember over the period of time that the research was undertaken. Thus, when asked further questions concerning the randomisation element of the study design, many trial participants could not recall whether they had been allocated to the intervention or to the control group, or even that there were two groups at all:

I forgot to tell you the truth, you know. It just went out of my mind till I got a letter to say.

No, to be honest I would have probably forgotten, my memory is shocking.

As time went by I just thought actually that I’d been forgotten about . . . I’ve got all the letters from the past and it does state . . . [random allocation to the wait-list control group] but as time goes by you do forget things.

This did not deter trial participants from taking part in the trial, as many of those allocated to the wait-list control group did not expect to receive anything from the intervention and so were not worried about having to wait the extra 2 years:

Because I wasn’t expecting anything [from the intervention] like that [receiving benefits] it hasn’t made any difference.

I never really thought about [receiving benefits] . . . I just thought well didn’t know about it before, so it didn’t matter.

On the other hand, a few trial participants were worried that they might be, or be disappointed that they were, allocated to the wait-list control group, delaying their welfare rights assessment by 2 years. Some professional participants also expressed concerns regarding trial participants allocated to the control group, as it was felt that these individuals would unnecessarily miss out on 2 years of benefits:

Well, I worried a little bit, but there again if it’s gonna [going to] happen, it’s gonna happen, if it’s not, it’s just life. It all works out in the end.

I was a bit disappointed being in the second group . . . as at the time I was going through a hard time with [another welfare rights] caseworker.

Those individuals [allocated to the control group] have . . . potentially missed out on 2 years [of receiving benefits] . . . it’s their entitlement, why wait 2 years for it when they should be getting it now? . . . that was the main concern.

Not surprisingly, some control group trial participants who received a successful benefit claim from the intervention reflected that they would rather have been in the intervention group:

It might have taken a bit more stress off the situation if I had got it 4 or 5 years ago.

I think it’s wrong. They shouldn’t wait 2 years. They could have been claiming it for 2 years . . . sooner . . . There are people who are in dire straits, so shouldn’t have to wait 2 years, getting back to that people who deserve it and people don’t deserve it, because I could wait. People who are on the borderline or breadline, they should have priority and be seen straight away, definitely.

However, some intervention group trial participants recognised that they would not have received the welfare rights advice at all if the study had not taken place:

If I hadn’t got the advice, I would be still the way I am now, because I wouldn’t have applied for it myself . . . I wouldn’t know where to have gone for that . . . I would have just put up with it and not had it . . . I don’t think it would have made much difference at all being in that second group.

In one case, a trial participant stated that the delay was beneficial because an adverse event coincided with being seen in the control group:

So it was just the luck of the draw. As it happened the time I got the advice was the right time for me because if I’d had it previously it wouldn’t have applied to us. It was only after Timothy [husband] died that I became entitled to it.

Overall, intervention group trial participants thought that the randomisation element of the study design was an effective way to answer the research questions and felt that the research was beneficial to future generations of benefit claimants:

It’s the only way you can find out if people [are] happy or unhappy [with the intervention].

The benefits from this [research are] not just for me but for multitudes of people.

Although the randomisation element of the study design was deemed potentially unfair to the control group, it was accepted that (1) this study design was the only way to establish the impact of the intervention on quality of life; (2) welfare rights advice services are not statutory and (3) group allocation was completely random:

I just thought that it was, you know, just the luck of the draw.

Among those who were interviewed, there was broad agreement that the trial design was an acceptable way to address the research question of the effectiveness of welfare rights advice on health and well-being.

Trial participation

Overall, the trial participants considered the research to be conducted in an appropriate and confidential manner. Most trial participants did not feel that the questions asked were too long or intrusive, with many instead expressing enjoyment of both the researcher’s and the WRA’s company:

I hadn’t felt tensed up you know, waiting for something that’s gonna [going to] be said, that shouldn’t be said or if I put me [my] foot in [it] there or something like that . . . it’s just been nice, comfortable and relaxed. Much better than what I had imagined at first.

None of the trial participants felt that taking part in the study adversely affected or damaged their relationship with their GP, who was associated with the study via the recruitment letter. Trial participants generally felt that their largely positive experiences of taking part in the trial reflected well on their GP:

Well it [participation in the trial] probably made me think more of her [GP] . . . I was surprised when she was amazed that we’d never had any help, ye [you] know.

They [GPs] were quite happy that I was applying actually.

One control group trial participant identified a negative experience of taking part in the study, concerning what he perceived as the depressing nature of questions regarding suicide that were asked in the PHQ-9 at baseline and 24-month follow-up:

[The questions on the PHQ-9 questionnaire] . . . were too morbid, so I didn’t fill the second lot in . . . There’s no way am I ever thinking of committing suicide . . . They don’t relate to me in no way whatsoever . . . It was all asking if you felt run down and you felt like topping yourself. Those questions never entered my head . . . I didn’t want to fill it in anymore . . . It was depressing and it could make someone think of committing suicide . . . The people that I met [interviewer and WRA], nothing wrong with them though . . . [and] they said, ‘You don’t need to fill it in’, so I didn’t fill it in.

No other interviewees expressed concerns about the content of the questionnaire.

Acceptability of the intervention

Apart from one, all trial participants interviewed in the qualitative study and the professional participants involved in delivering the intervention reflected positively on the experience of taking part in the Do-Well study. Trial participants expressed gratitude for the advice and monetary benefit received as a result of the intervention:

This has made a big difference to me . . . [the WRA] was just excellent.

Being able to get that money . . . that’s been a great benefit which I wouldn’t have had without taking part.

Our practice nurse and our assistant practice manager spoke very highly of [the Do-Well project] and patients generally have been really interested in and engaged with it.

Even trial participants who received no benefits as a result of the intervention felt that the intervention was useful for clarifying their benefit entitlement status:

It was useful in the way that we found out that we weren’t entitled to anything else.

The use of local welfare rights services was highlighted as another positive aspect of the Do-Well study. It gave trial participants the confidence that they could access further welfare advice if their benefit situation were to change, even if the study itself had finished:

I know where to go should I need help as well and that makes a big difference. Whereas before I thought, ‘Where the heck can I go? Who can help? Who can I talk to?’ Now I know and that makes a difference.

Impact of the intervention

This section focuses on the impact of the intervention on financial status, health and well-being from the perspectives of trial participants and professional interviewees.

Financial impact

Of the 50 trial participants selected and consented to be interviewed, 34 obtained a successful financial benefit claim as a result of the intervention. Owing to a purposive selection process, and our aim of exploring the perceived effects of additional resources, we sampled a higher proportion (78%) of individuals for the qualitative study who obtained a claim as a result of the intervention than of the proportion in the full trial population (25%). As shown in Tables 20 and 21, a range of previously unclaimed benefits was obtained and most trial participants were entitled to more than one benefit. Eighteen trial participants qualified for means-tested benefits, indicating income thresholds of < 60% of the median income (the most commonly used threshold of low income);105 15 trial participants were eligible for non-means-tested financial benefits only, indicating that they suffered from a range of health and care needs. Two trial participants received non-means-tested non-financial benefits, including disabled parking badges, walking aids and home adaptations. Actual monetary gains ranged from £7 to £151 per week, and the average weekly amount gained was £76, with 25 trial participants also receiving backdated benefits. Many trial participants talked about how the extra money had enabled them to escape a previously precarious financial situation:

[Regarding receiving extra benefit income] It will make us [me] feel better because I’ll not be wondering . . . what do I have to cut out for to pay that bill which I used to do . . . I’m not feeling the pinch as much now whereas before it was a bit of a struggle.

Them years you didn’t get help . . . so I just had to struggle on, I’m used to having no money, you know I had years and years just struggling through, coping, but now I’m getting this, it’s made a big, big difference to my life.

Many trial participants mentioned that before the intervention they had been borrowing money from friends and family or relying on continually decreasing savings to afford their basic living costs. The extra income had helped to reduce their debts as well as mitigate the use of their finite savings:

She thought I should [have] had this [benefit] for years like . . . and I think I should have as well . . . ‘cos [because] you couldn’t make ends meet really . . . and you start getting yourself into debt because you borrow money off people and then you try to pay them it back . . . good job you’ve got good parents sometimes . . . you divvint [don’t] want to borrow it, like, but sometime[s] you’ve got to. The money that I had prior to [the intervention], you could sort of live on it but you were just surviving really . . . you just need enough . . . and a little bit extra so you divvint [don’t] sink.

I have more peace of mind about paying for the things that help whereas before I took it all out me [my] savings money which obviously went down . . . so it has given me a lot of peace of mind in that sense.

Other trial participants reported the extra income enabled them to start saving to afford future expenses, such as funeral or care costs:

It’s a buffer zone that’s handy you know . . . It’s just left in the bank to accumulate for any eventuality. I put money aside for my funeral and my wife’s funeral.

Well I know it’s there if I need it, the extra . . . I know it’s there if I needed to fall back on it, you know. I mean they are talking about doing this other knee, there might come a time when I might need somebody coming in a couple a times a day and have to pay them, so I know that that money is there to pay for them.

The extra benefit income primarily increased trial participants’ ability to meet their basic household bills, transport costs and domiciliary care services. Trial participants reported being better able to heat their homes and afford food without having to worry about the rising cost of fuel and shopping bills. Trial participants also reported being in a better financial position to cope with larger expenses, such as replacing broken household items, without going into debt:

Well I can buy more food than I was able to do before . . . by the time you’ve paid for your heating and one thing and another it was a struggle to get food in. Sometimes I had to go and borrow something off the family . . . from their cupboards and that, you know . . . but it has helped that way.

I think the extra money has helped me absorb the changes in the economy . . . everything just costs more.

I’ve just had a freezer broke doon [down], a fridge broke doon [down] and the cooker broke . . . I would have probably had to get a loan out if I didn’t have these benefits to replace them.

Second, the extra income was used to pay for costs associated with travel including taxis, trains, buses and private cars. Access to affordable transport was key to engaging in daily activities and facilitating social interaction. The extra income helped trial participants to retain their independent mobility, to attend hospital appointments and go shopping, as well as socialise with friends and family:

Because I don’t go out on me [my] own at the minute, I could maybe use it to go in the taxi to do things, to be a little more independent . . . go shopping to the supermarket.

Me [my] sister had a stroke about a year ago and she’s in a home at [place name]. Well, if one of the relatives can’t take me, then I get the taxi and it’s £14 there and back. I couldn’t do that before [the intervention] . . . she’s the only sister I got, she’s stuck in there, she can’t get out . . . and she just lived round the corner there you know so I’ve missed her.

Well I can go out and about in the car . . . and that’s me [my] main escape and I can like put money away so I can go for runs . . . I take Celia and Jane up with us, we have like a girls’ day out . . . daft carry on and a bit of a natter and it’s lovely.

Third, many trial participants saved up or spent their extra benefit income on domiciliary services, paying formal services or family members to help them with cleaning, shopping and personal care in their homes.

I pay a girl to come and just wait for me in the bathroom while I had me [my] shower while I’m getting in and out just to see I’m all right and I just have to ring another girl, Chloe, she goes and does all me [my] shopping for me, ye [you] know, so I pay her. But that’s how I look at the Attendance Allowance, [it] is [there] to help me with my quality of life, to improve it.

A few trial participants reported spending the money on home services to maintain, improve or adapt their properties:

I’ve just had a painter in here. I had a leak in the roof and he had to repair that, so I had to pay for the roof as well, which is a lot of money when you think about it . . . certainly [the extra benefit income] helps. As I say, you don’t realise that you don’t need money [un]til you get a bill in . . . like for the builder and the painters and the joiners.

It helped me a lot. I’ve gotten my fence fixed out the front and I’ve gotten this [mobile thermostat] to help me [my] heating . . . plus I’ve gotten other radiators fitted . . . so it’s a lot warmer now . . . I’m nearly 83, plus me [my] chest, this weather, it kills us. I’ve got that COPD [chronic obstructive pulmonary disease].

Being able to afford these services and household adaptations, as well as daily living aids such as light, accessible household appliances, was important for those with ill health and disability, as it improved their comfort and well-being by enabling them to carry on living independently in their homes despite being unable to do as much as they could before:

[Owing to receiving extra benefit income] I bought myself a new microwave . . . because I can’t manage pots and pans . . . because I have got a lot of nerve damage in my left arm and hand . . . And, I did go out and buy myself a vacuum cleaner, one of these very lightweight ones because I can’t manage my old vac . . . it is brilliant.

It [benefit income] can make such a difference to older people’s quality of life and being able to live independently . . . bringing in more money that they can use for gardeners, carers, handypersons and cleaners . . . if you’ve got care needs . . . [it] is important . . . We’ve had quite a few people who can’t manage [cleaning] anymore and they’re getting more and more depressed with the state of the place around them. They’re getting embarrassed and becoming more isolated because they don’t want people to come around and see it, so if you get that little bit of extra help to do that . . . Being able to go out, get the occasional taxi, pay off debts or not get into further debt. It’s all those sorts of issues.

Additional financial resources also enabled trial participants to access formal services rather than, or as well as, relying on family and friend support networks to provide the help required. The extra benefit income also increased the affordability of council care services:

Some trial participants reported a sense of pride in being able to reward family and friends for the help they received through offering them money or being able to buy them gifts:

I couldn’t get out at all, and there was a friend of my daughter’s [who] came and helped me with shopping and she wouldn’t, she didn’t want to take any money, but I made her. I says ‘I [have] got money to cover this now, this allowance allows me to pay people for anything they are doing for me’ . . . I didn’t need to pay her, but I did, you know, just for my own satisfaction, so that’s helped.

Impact on well-being and health

The cumulative impact of being able to afford household, transport and home care costs, as well as receive home adaptations, walking aids and accessible parking badges, had positive effects on trial participants’ ability to engage socially and, consequently, on their overall well-being and health. Trial participants reported improved mental well-being and better access to social support networks, as well as increased ability to cope more independently with existing physical health problems.

Professional and trial participants reported how the improved levels of income had reduced stress, worry and anxiety that had been created by financial uncertainty and/or debt. Many trial participants expressed feeling happier or gaining ‘peace of mind’ after receiving the extra benefit income:

I used to worry at one time but now I don’t, I’ve got no worries at all now. I know I’ve got enough coming in each week to last me that week and put a little bit away for whatever.

I know that loads of older people worry about poverty; it causes stress and anxiety . . . people worry about where they’re going to get meals . . . being able to heat their homes . . . who’s going to look after them. It makes a massive difference . . . for people to be able to get more money in their pockets . . . they end up being wealthier and healthier.

Some trial participants identified that decreased financial worries had a positive impact on their physical health:

I think it has done wonders for me, it has taken off a lot of stress problems . . . Generally having that little bit of extra money does . . . improve health slightly because it takes the stress away. If you take the stress away you are not tensing up, you are not damaging any muscles, you are relaxing more and you are sleeping better.

The extra income received as a result of the intervention enabled trial participants to afford key transport costs as well as to ‘pay their way’ during social events, both of which facilitated greater social contact despite their increasing age-related health and functional problems. The narratives revealed trial participants’ desire to maximise activities and social opportunities with friendship and family support networks while they were still well enough. Thus, this increased independence to engage in social activities was reported by professional and trial participants as having a positive impact on mental health:

Some of these people may be housebound, or quite socially isolated, so it could have an impact on that particularly if it releases some extra cash into their pocket to enable them to get out and about, and be much more social in their outlook and the way they behave.

Trial participants had various health issues, including problems with joints, lungs, heart and blood as well as arthritic pain, general fatigue and diabetes. Many did not feel that the monetary increases and non-financial aids received as a result of the intervention could remediate these physical illnesses. However, they did report that the extra benefit income enabled them to cope better with various physical health problems:

[On receiving the extra benefit income] It means I was able to get myself a little scooter to go in the back of the car. I can only walk so far without pain . . . I feel in myself better. It doesn’t take away the aches and pains but in myself I feel calmer . . . Everyday life for me, I don’t worry as much anymore, I know I will be able to cope.

Some trial participants recounted how being able to afford to keep their heating on for longer had a positive effect on their ability to manage health conditions:

[On receiving the extra benefit income] It means I can have the heating on all day, without having to worry, because I know I’ve got that extra money to pay . . . I mean Clive [husband] just sits in a wheelchair all day, so he’s on the cold side and I keep thinking well, I can’t have this. I mean, this heating has been on since 8 o’clock this morning and it’s usually on [un]til 11 o’clock at night you know, but I think, well, it doesn’t matter, now, as long as he’s comfortable, we’ve got the money to do it, so that’s fine . . . that is a big weight off my shoulders.

Overall, when asked more broadly about the link between income and health, professional participants, and some trial participants, suggested that low income had a negative effect on physical health outcomes:

We all know about social scales, people who are very poor, have poor lifestyles. If you have more income you can have a better lifestyle, can’t you? Have better food, comforts, heating, access to things. So that’s what money brings you, I don’t think it necessarily brings you health but brings you access to things that can give you better health, doesn’t it? That’s what I believe.

Clearly if you’ve more money in your pocket, you can buy different food. You can go to the gym, you can become more active, whether that’s social or physical activity. It’s an enabler for people . . . We know that income is highly correlated to health and well-being.

Mechanisms of action

Role of the welfare rights advisor in overcoming barriers to older benefit claimants

The main barriers to older people claiming their benefit entitlements can be categorised into (1) knowledge and process and (2) attitudinal. WRAs were pivotal in overcoming barriers to claiming benefits through providing one-to-one advice, support and advocacy. Professional and trial participants reflected that many older people preferred to manage on tight budgets rather than claim welfare entitlements, valuing hard work and independence from state support so highly that they saw accepting benefit income as a personal failure. Additionally, many older benefit claimants did not view welfare as a right but rather as a safety net, designed for others more deserving. Thus, many held further worries about the legitimacy of their claim as well as concerns about inadvertently claiming fraudulently:

I always feel embarrassed at claiming, because I’ve never claimed anything in my life. When you’ve worked all your life it’s strange . . . it never feels as though I’m entitled . . . it’s not in my nature.

I didn’t wanna claim it in case I’ve made a mistake, because I couldn’t understand some of the stuff that you had to fill in and I thought if I put my name on the wrong thing here, I could finish off in jail or something, so [I] just never bothered.

I think there is a real attitude [among older people] of having worked all their life and supported themselves . . . they really felt that they’d kind of failed by having to fall back on state support and that they should be able to cope . . . With some of them as well . . . the amounts of money they received were quite substantial . . . They didn’t trust that the system had calculated it correctly and were worried that somebody was going to turn up on their doorstep and tell them that this was all wrong and they had to give it all back. That in itself was a barrier as well.

Professional and trial participants reflected how WRAs overcame barriers to claiming by explaining benefit entitlement and addressing concerns about individual claims. The provision of trusted professional support throughout the benefit application process resulted in many successful benefit claims that would not have otherwise occurred:

[The WRA] came and explained all we would be entitled [to], ‘cos [because] you have to do this for him and you have to do that . . . I think it’s understanding the form as well, when you read the form you think, ‘God, you’ve more or less gotta [got to] be completely incapacitated to get this’, but she explained it, you didn’t have to be.

He had his book and he showed me, ‘It is in black and white. It is this law that you will get this’. That really put my mind at rest . . . [my WRA] was spot on, he knew exactly what he was talking about and that made me feel better. I didn’t have to worry . . . It was good, I felt reassured that it was right as well. I would be terrified in case I was claiming something that I shouldn’t get. He explained it all.

The staff build up a relationship with the service user and encourage them to claim and not worry about doing it wrong or being accused of fraud because everything will be done with [the WRA] and explained at every step . . . often the people in the most need who are reluctant to claim, they need a friendly face to sit down and talk it through with them.

Trial participants whose benefit applications were initially rejected further highlighted the important advocacy role WRAs held, which gave applicants the confidence to challenge official decisions as well as advice on how to strengthen any reapplication:

Well he [WRA] was like our spokesman, it was like having a solicitor at a trial, you know . . . we were really surprised when we did get it [they received Attendance Allowance on their reapplication], we wouldn’t have got it if it wasn’t for [WRA] . . . when you go in front of that thing [disability capability assessment] and turned out nothing’s wrong with you [when initially turned down for Attendance Allowance], what do you do? How do you fight them? . . . if it wasn’t for [WRA] and you lot [referring to the study], we would never have known.

Overall, domiciliary welfare rights advice was regarded as enabling access to entitlements for vulnerable older populations, particularly when health problems diminished their capabilities and confidence:

You’re in your life of working and ye [you] think ‘ooh I’m alright, I’m independent’, [and] that takes you into a different category, if you know what I mean. But as I got that little bit older . . . there comes a point where you do need it and I came to that stage. I thought now, especially when he’d explained it all to me and after that mini stroke thing, I thought to meself [myself], ‘aye [yes], it’s a good job that I did’ [apply for benefits].

Most trial participants expressed surprise and appreciation when their claim was successful, particularly as most had not thought that they would be entitled to anything:

[On receiving benefits] Absolutely shocked to the core, absolutely shocked to the core, I phoned [the WRA] up when the letter came and I just said ‘it’s wonderful, I can’t believe it, can’t thank you enough’ . . . but oh, absolutely gobsmacked when the letter came to say that I was entitled to that money.

There has been some good results . . . ones with a bit more income and maybe some savings are less likely to [claim] because . . . they didn’t think they’d be entitled to anything and they were and it might just have been a small top-up of the pension credit, but it was something that they didn’t know.

Primary care as a point of contact for older people

Many professional and trial participants saw the use of GP surgeries as a referral centre for the intervention as an ideal model of service delivery for older populations. Primary care, with its high levels of contact with older people, was regarded as one of the first places where individuals’ changing health circumstances are presented, changes that may lead to new benefit entitlements:

[GP surgeries] are in a good position for vulnerable older people because they have more contact with them than anyone else . . . more so than even maybe the local authority.

A lot of benefit entitlement is linked to changes that happen to people during their lives, and a lot of those changes will end you up in the GP surgery, so that is the place where you should be trying to identify people and link them into [welfare rights] services.

Professional and trial participants felt that older people regarded their local GP surgeries as a respected professional and universal service acting in their best interests. As a result older people were viewed as much more likely to engage with a benefits assessment referral through their local practice, as many trusted the judgement of their GP:

Obviously the health sector is one of the places where people can go and it is universal. That means because it is an open door people don’t feel judged by going to . . . it is a good opportunity for the advice sector but also it very much speaks to things like the Marmot report.

A lot of older people trust the GPs and the nurses at the GP surgeries. I think there’s certain older people who, if a GP says, ‘I want to refer you on. They’ll help. You can trust them’, they’re more likely to engage initially. I think it is a useful model.

Domiciliary model

Opinion was divided on the benefits of a domiciliary service delivery model for welfare rights advice. Concerns were primarily about the resources required to deliver the service in this way, but distinct advantages were identified for older populations who have multiple health, income and mobility problems that inhibit their access to services:

If you asked the clients how they would cope with getting in [to their central offices], half of them wouldn’t get in and half of those that did wouldn’t be able to sit in comfort and go through all the details and the other half would have probably left after the vital paperwork. So I just don’t think it would happen if we didn’t do the [home] visits.

Professional and trial participants further argued that domiciliary visits enabled WRAs to make a wider assessment of clients’ needs, and fostered a safe and confidential environment for trial participants to disclose sensitive information, both of which were felt to strengthen any benefit applications made:

I felt better about it because . . . you are in your own environment so you don’t feel pressured or anything like that, it was more relaxed.

Being in the client’s home gives you an opportunity to make a wider assessment of the client’s needs . . . because you can see how the person lives. Most people will tend to, but not deliberately, play down their care needs because they don’t necessarily see something that is part of their general behaviour, as a care need. It’s how they cope, so they don’t see it, but if you can actually witness some of this stuff, you can make a better application.

When I’ve been out to clients’ houses, they seem to be more relaxed, there’s a lot more I can start to ask about, because you’ve already got the trust, if you are at the house you can certainly start to probe a bit more.

Some professional participants advocated the ‘cost–benefit’ savings domiciliary welfare rights interventions had regarding their potential impact on the use of health and social care services:

I think it’s highly appropriate [model of welfare rights advice] . . . in terms of savings for National Health Service. If you can give people that little bit of extra help at an early stage before they might not be able to manage in their homes anymore, with more depression, more visits to the GP and more spent on them, yes, it’s very important to have home visits available.

If you are trying to promote independent living, staying healthy and not being a demand on local authority and health resources which can [be] very expensive you need the preventive work to be effective . . . it’s a good investment.

If they are going out and struggling and you provide an aid and adaptation, it’s gonna [going to] make a big difference to them . . . there’s less risk of falling . . . hav[ing to] go off to hospital . . . that’s the drain on other services.

However, in addition to resource issues, a minority of professional participants criticised the domiciliary method of service delivery, viewing it as paternalistic and potentially disempowering, limiting understanding of the claimant process and fostering a long-term reliance on welfare rights services. Other professional participants further argued that trial participants might find home visits intrusive and advocated the need for alternative models of service provision for those who prefer to receive advice in a neutral, central location:

It’s a little bit paternalistic in its approach . . . it disempowers clients, and in the longer term, that can be problematic for a client . . . if there is any future problem with the administration of a benefit or the review of a benefit, if you’ve done it all for them, they generally haven’t a clue what that is when it comes in . . . A good I and A [information and advice] service helps someone to assess how much they can do for themselves. It helps tell them how to do it, empowers them to do it, and is there as a safety net if anything goes wrong.

Some people might not want to be seen at home anyway . . . It can be very intrusive. They may be embarrassed about the state of their home. There may be someone in the home who they don’t want to know . . . that they’re taking advice . . . [involving] other issues such as domestic abuse.

It’s good to have a mix of places to see people . . . some people see [home visiting] as an intrusion . . . one size doesn’t fit all . . . some people might actually prefer to be seen in the GP practice particularly if they are living in poverty and those prouder older people might not want to have strangers coming into their home.

Unanticipated consequences of the intervention

As we have demonstrated, many trial participants were highly satisfied with the intervention, its delivery and its outcomes. Trial participants did not highlight any adverse outcomes, harms or risks associated with the delivery of the intervention. Trial participants did not discuss spending their additional benefit income on potentially anticipated harms such as alcohol, tobacco, ‘luxury’ foods or gambling but rather used it primarily to afford basic household, transport and care costs. Furthermore, trial participants did not associate the independence and mobility received as a result of the intervention with accidental injury or exposure to infectious diseases, but rather with an increased sense of mental well-being as a result of their ability to socialise with family and friends despite their limiting ill health. Although some trial participants used their additional benefit income to afford a new car or taxi fares, trial participants felt that this increased, rather than limited, their levels of physical activity, as they were unable to leave the house without this transport available. No other potential unanticipated harms or risks were discussed throughout the qualitative study. There were, however, a number of unanticipated consequences concerning the intervention delivery identified by the WRAs delivering the intervention.

Intervention delivery

Throughout the study period, progressively larger funding cuts negatively impacted on the capacity of welfare rights organisations to deliver services. Two professional participants reported that their organisation was further stretched by delivering what they regarded as resource-intensive domiciliary visits, which were different from their standard practice:

We’ve had to do them all as home visits . . . it has taken an awful a lot more of our time and we haven’t had the flexibility to deal with it . . . [in our organisation’s service delivery] if it was obvious that [the client] wouldn’t get any benefits than they wouldn’t go through the specialist [WRA], whereas under the Do-Well study the specialists have been doing the whole thing which has been fine and we’d agreed to do it as part of the study, but in the general day-to-day processes without getting the funding for a visit worker to work in that way it does take up more time of the people who are providing advice.

Two professional participants found they had to take more time explaining the Do-Well intervention, as trial participants had a limited understanding of the study process, especially in the case of control group trial participants who received their intervention 2 years after the study started:

At the beginning it took a little bit of explanation of who we are and why we were coming out . . . at least 2 out of the 13 seemed really resistant to me coming out . . . more the second [control] group. I don’t know whether that was because of the 2-year delay . . . there just seemed to be more of the ‘well, I don’t understand what this is about’ or ‘somebody has already come out to see me’ . . . there was that part of the problem.

One professional participant described concern about a lack of staggered Do-Well referrals to her organisation:

The only problem I can remember . . . is that the referrals didn’t come through steadily. There were none for a few weeks and then loads, so that put a bit of pressure on . . . [I would have preferred it] more staggered.

However, professional participants who raised these concerns also highlighted that the feedback mechanisms were useful in order to raise such concerns and adapt the delivery of the Do-Well intervention to suit their organisation’s needs:

[Regarding limited trial participant understanding of the study process] It was good to have those feedback mechanisms as the project was going along to raise that as an issue.

Impact of external factors

Throughout the period of the study, major changes to the UK welfare system were being implemented. Owing to the timing of the intervention delivery (June 2012 to August 2013), none of the changes [e.g. introduction of Universal Credit, Personal Independence Payments and the spare room subsidy (‘bedroom tax’)], affected our intervention trial participants. Overall, in comparison with the adult population below state pension age, those over the state pension age are less affected by the changes, in terms of the key benefits available to older people. However, the cuts in public services disproportionately affected the poorest areas with the worst health outcomes. Welfare rights advice services came under increasing strain from a combination of funding cuts and increasing demands as a result of changes to welfare.106,107 Thus, the service delivery model that was developed and piloted in 2001–5,11 and that we adopted for the Do-Well study, had to operate under highly constrained budgeting circumstances. We therefore took these external factors into account and examined the suitability of our intervention delivery model in the current economic climate.

Resource-intensive intervention

Despite professional participants advocating a universal, domiciliary intervention as an ideal model of welfare rights service delivery for older people, many recognised that it was a resource-intensive intervention that might not be able to cope with client demand. Owing to rising resource constraints created by the impact of public sector cuts, professional participants felt that this model could not be translated into current routine practice, as it would not be seen as affordable or cost-effective by funders. Many professional participants, and some trial participants, suggested use of a wider range of first- and second-tier service delivery models, prioritising centralised drop-in surgeries and telephone advice lines over face-to-face advice. Some professional participants argued that this would maximise resources, providing welfare rights advice for as many clients as possible despite funding constraints:

There has been a move away from doing home visits . . . money has driven that . . . just not having the capacity . . . [A home visit is] an important part of doing the job and there are some clients where it is the only option, but offering it as a matter of course to everybody, we would probably disagree with . . . in the current climate, where the key driver is cost . . . [and] even telephone advice is often considered too expensive . . . You’re asking for a very expensive approach to the welfare benefit take-up.

I think giving a carte blanche home visiting service is probably quite wasteful, in terms of resource, because it costs us time and money to travel to somebody’s home . . . if some of those people were able to travel to a central point then your advisor would have been able to have reached more people . . . if we could offer a premium service to everybody then that is obviously what I would want to do, but I have limited resources and a duty to help as many people as I can with the resources that I do have.

On the other hand, it was accepted that although a centrally located service provision would make welfare rights advice services available to more people, sole reliance on such a service delivery model would exclude the most ill, disabled and housebound, for whom domiciliary services are still required:

I think that the main driver [in not funding domiciliary services] is that they want locality-based services and want more people to be seen. Now, my argument, my response to that, is that more people will be seen, but those vulnerable people who are relying on home visits will receive no service at all. We will see more people, but we will see more of the less vulnerable, but there doesn’t seem to be a great deal of concern about that.

Optimally identifying benefit entitlement among older people

Professional participants delivering the Do-Well intervention reflected on the low uptake of benefits among trial participants during the study. It was reported that many of the trial participants seen had comfortable levels of income and no major/limiting health issues, eliminating them from benefit eligibility. Thus, the professional participants highlighted the Do-Well project as having higher levels of ‘redundant’ benefit assessments than their normal welfare rights service provision:

We soon found that a lot of the people who we were coming out to see we ruled out of the entitlement to benefits simply because they had too much capital . . . and they didn’t really have health problems.

Professional participants advocated an initial triage involving assessment of clients’ care and health needs as part of a first-tier advice service, so that a full benefits assessment, or the use of a domiciliary visit, is undertaken only when appropriate:

I don’t know if there’s a better way of finding the people who are actually missing out . . . Maybe over the phone . . . within a few questions you know they are not going to be entitled because they had no health issues and they were in receipt of some quite decent pension or they had savings for the future, so with those three questions you can virtually rule them out.

I like the telephone assessments, to start with, because it makes sense . . . [to] identify they are eligible for a benefit first . . . following this up with a mix of home and office visits.

I would . . . try and identify how you could segment people, so that the ones who weren’t able to do it for themselves would be the ones prioritised for the domiciliary visits . . . a more tiered approach . . . perhaps get a short questionnaire completed which would allow you to do that segmentation in a more robust way . . . I think the key is targeting in a very personal way, so you are thinking about the person’s needs rather than the groups, so not that you live in a disadvantaged area, therefore you are going to get this, [but] you live in a disadvantaged area and we have evidence that you are not very good at planning . . . I think we just have to think quite carefully how we then target those people.

Many professional participants went on to outline further general points in order to improve welfare rights services that involved timely advice and that recognised that some people used various services at multiple (crisis) points in their lives:

There must be lots of services like us who will see the same people year in, year out with the same problems . . . if the intervention came at an early stage instead of at a crisis point, it’s got to make a difference in the long term . . . in terms of trying to help the poorest and most disadvantaged communities . . . to reduce the need for public services really . . . There’s just so much need out there . . . there’s more than enough work for everybody . . . We have to start working more closely together . . . It’s trying to find ways to maximise your resources as a whole and to trust each other.

Domiciliary welfare rights advice accessed via primary care was regarded as having a positive impact, by enabling older people to gain their benefit entitlements. Trial and professional participants reflected on how such a model might be translated into policy and practice. User-designed, preventative services were advocated in order to be relevant to local context as well as engaging with vulnerable claimants before they reached a crisis point. Many professional participants stressed the importance of fostering stronger collaboration across the welfare rights sector to maximise sector resources and service delivery. One professional participant suggested that it would be beneficial to train older people as volunteers to aid the delivery of welfare rights advice:

Peers understand their situation because they’re a similar age to them, or in similar circumstances . . . training older people to give benefits advice to other older people would be an interesting model . . . we would always advocate involving older people . . . in the design and the delivery of services . . . to meet their needs . . . which will make them cost-effective as well as efficient in meeting their outcomes.

Informally, the sharing of advice and information concerning benefit entitlement occurred between trial participants. Professional and trial participants indicated that welfare rights advice received is passed on to wider networks of family and friends, encouraging wider benefit uptake than for those just involved in the intervention:

I mean, as I says, my friend lost her husband about 8 years ago . . . and I nagged at her, because she, I mean she worked till she was 67 and she was only on like a small pension from Gerry and then her own old age pension and she was struggling. I say ‘Josie, go and ask about housing benefit’, ‘no I’m fighting’. I says, ‘why, what are you fighting for? I think you are entitled to it’. And she eventually went last year and she got her housing benefit [and said] ‘I’m glad I took notice of you’. I says, ‘well if I got it, you’re entitled to it’.

If you go out to see one person . . . then it’s always a word of mouth that they pass on . . . so they pass it on to the relatives or family.

Impact of public sector cuts

Professional participants outlined that older people’s demand for welfare rights services was rising. A number of factors were identified: the increase in the older population, particularly the oldest old; an increasingly punitive and complicated welfare benefits system; and the implementation of the Health and Social Care Act 2012108 placing new and additional responsibilities on local authorities to provide advice services to carers as well as those in receipt of care:

There is a definite increase in the number of ‘younger’ older people coming [for welfare rights advice] because . . . the benefit system is now much more punitive . . . with administration problems in the benefits processes [as] there are less people to administer.

[The demand for welfare rights advice services] is increasing all the time . . . We can’t possibly deal with everyone who comes to us, there is too high a demand . . . We’ve got this huge ageing population that is going to increasingly need that help to stay in their own homes to keep the costs down, [and stay] independent for as long as possible.

However, rather than receiving improved funding allocations, all professional participants reported an intensification of austerity-driven public sector cuts that vastly decreased the resources available for the welfare rights sector. Staff redundancies and organisational restructuring had left many services with fewer advisors coping with an increased workload. Some professional participants described how their organisations had such limited capacity that they had curtailed outreach work to limit client demand:

Legal aid funding has gone which funded a lot of welfare rights . . . the local authority funding is under pressure . . . [and] advice agencies are having more trouble getting funding from charitable trusts. So many people are under pressure and they are on a downward trend.

Because posts have been deleted, we feel like we work on the bare bones of staff, so there are concerns about having enough staff to deal with everything.

If you crunch the numbers you know, you need a team three times our size to stick up a flag and say all older people come here for welfare rights advice. We can’t have too high a profile . . . [or else] our waiting list gets too much and that’s bad service for the clients and the staff feel harassed. So we don’t tell everybody all the time that we are here.

Professional participants reported a shift away from guaranteed local and central government funding towards short-term, precarious and competitively tendered contracts from the charity, corporate and health-care sectors. Constant cycles of funding applications were placing a strain on already-stretched resources. At the same time, ‘cost-effective’ interventions were felt to be increasingly prioritised, with an emphasis on providing specialised and targeted interventions using digital, centralised and telephone models of service delivery rather than face-to-face consultations:

I’m under pressure from numerous places to provide more for less . . . the demand for welfare benefits advice far outstrips what we’re able to provide, so we’re having to make decisions all the time as to who receives the service and who doesn’t . . . that’s not a comfortable position to be in.

Unfortunately that’s how it’s moving now, a lot of the funding rather than being general it’s very targeted . . . it would be good to get funding for a general service available for anybody for specialist benefit advice [rather than just services for people with] leukaemia, young people and mental health.

[Funding] tends to be very much issue-focused and short . . . [but] advice funding should be continual. It shouldn’t be about an innovative new project. There is no innovation in how you provide advice, to be honest. We’ve been doing it to death for years. We generally know what works. It doesn’t need innovation. It just needs to be funded long term, not 2 or 3 years at a time through grants.

Some professional participants predicted that this reliance on digital or telephone services would increase barriers to claiming for older people, as many do not have the technical skills to access advice services online:

I think it’s a major shift, the only available services are online and old people don’t necessarily . . . have ready access to the online services, or the confidence to access them.

Most local authorities are keen to pay for the cheapest option, which means less face to face . . . they would rather people were using self-help tools on the internet . . . it’s as much about cutting costs as it is about saying, ‘This is a sensible approach to giving access to services’, and particularly for older people, it makes no sense. Once you’re over 70, the likelihood of you using the internet is pretty low, and that’s using the internet for anything, not going online and making applications for benefits, which is a quite complex activity.

Overall, trial and professional participants depicted a bleak future for the welfare rights sector, predicting further welfare reform and cuts to welfare rights services:

I mean the outlook isn’t great . . . I’m not very confident that we’ll be here in 5 years’ time . . . the only reason that say we might be here in the next couple of years is that welfare reform is massive . . . once those big reforms are gone the general sense seems to be people shouldn’t be on benefits . . . I don’t think there’s really much support for [welfare rights services].

Impact of widespread negative portrayals of citizens claiming welfare benefits

Trial participants demonstrated a heightened awareness of the stigma attached to claiming welfare benefits. They focused in particular on media and government discourses on benefit entitlement, and how these were negatively influencing the general public’s perceptions of benefit claimants:

They [the government] class every one of them [benefit claimants] as scroungers. They’re not giving any leeway for people who actually need it, you’re all the same. If you’re on benefits you’re an outcast to them . . . They show you the ones they want you to see, yes, but the ones who are entitled to benefits, no, you never see them.

I think the general public has got a bad opinion . . . If they are not on benefits I don’t think they understand what it is like to be on benefits . . . I think they look down on people with benefits. The opinion coming out in the papers . . . I think a lot of people who aren’t on benefits think they [claimants] are all scroungers. Well they are not really.

Trial participants did not agree with such negative portrayals of people claiming welfare payments, although there was widespread acknowledgement of dishonest claiming. Trial participants distinguished between ‘deserving’ and ‘undeserving’ claimants. Older citizens were viewed as ‘deserving’ owing to their lifetime contributions into the system, and the fact that, as a group, they were less likely to claim. Trial participants were concerned about the negative stereotyping of people on benefits because they felt that this was exaggerated, lumped a heterogeneous group of individuals together and made it more difficult for ‘genuine’ claimants to access their entitlements:

I think it’s because the papers, they don’t talk about the decent people on benefits. They’ll only talk about the ones that are on benefits, [with] all the children and they’ve got a 52-inch television screen, and they are smoking their head off and having a drink you know. But not all of the benefit people are like that.

They make you feel as though you are digging you know. Whatever’s out there should be readily available if you need it. You shouldn’t have to get anxious thinking, what if it’s not . . . it’s bad enough to be, struggling . . . dealing with the everyday things that life throws at you when you have got someone who is disabled, without having to fight for something that should be there because you need it.

Summary

The findings of this embedded qualitative study indicate that the research design, in terms of recruitment and randomisation, was acceptable to those interviewed, although there was some concern expressed, primarily by professional informants, about the 24-month wait for the control group to receive the intervention. Without exception among trial participants the intervention was deemed acceptable. The professional informants supported the need for welfare rights advice targeted at older people, but there was some disagreement about the optimal means of service delivery, particularly in the light of recent and continuing cuts to public and voluntary sector services. Trial participants viewed the impact of the intervention as highly positive, in terms of financial, social, health and well-being factors, irrespective of the amount of additional benefit received; professional participants were fully aware of the wide-ranging impact that additional resources could have for older people in need, and reiterated the preventative potential of ‘low-level’ interventions such as welfare rights advice. The mechanisms of intervention delivery – introduced via trusted GPs and domiciliary visits – successfully overcame the well-known barriers to claiming benefit entitlements among older people. However, immediately before and during the execution of the trial the most significant government-led changes to the welfare system since its inception began to be implemented, coupled with austerity-driven public sector and voluntary sector service cutbacks. These external factors were perceived to have considerable implications for the design, commissioning and delivery of welfare rights advice services in the future.