4. The Role Of Support In Mitigating Welfare Reform Impacts
- Chapter 4 presents the research findings from a module on formal and informal support mechanisms that can provide help and support with benefits issues. Respondents were asked about their past experiences of different sources of support, their present networks, and where they might go for support in the future.
- This chapter presents respondents' experiences of the advantages and disadvantages of different forms of support, and the barriers to accessing them.
- Respondents accessed a range of sources of support, for a number of different reasons. No one type of support was identified as the 'optimal' source; what respondents used depended on what their issue was, what was available to them, and what they felt comfortable using. However, some types were perceived as more useful than others.
- Many respondents had successfully accessed support to resolve an issue with benefits. What respondents found helpful was timely and accurate advice, delivered by well-informed, trustworthy and approachable professionals. Local authority (and housing association) welfare rights services were cited as particularly helpful sources of advice and support, alongside specialist Third Sector Organisations.
- The role of health and social care professionals in signposting entitlements and services, and in supporting benefit applications, was also highlighted as important.
- However, a number of barriers to accessing support were also identified, including accessibility, waiting times, and not knowing about services that could help.
Accessing help and support
4.1. Claiming benefits encompasses a journey from initially finding out about entitlements to being a claimant, with the application process - and sometimes an appeals process - between these two states. Some types of support can offer help with all of these stages, while others have a more specific role.
4.2. Respondents had all accessed different types of support, for different reasons, and with varying degrees of success. All respondents had approached at least one source of help with benefits issues. Three groups could be identified:
- Five respondents used support in a fairly limited way; accessing online information, or perhaps using a telephone helpline if specific issues arose during the claims process.
- Twenty respondents had approached a general welfare advice service or third sector organisation (TSO) for more specific or intensive support. Seventeen had received support from this type of source, while three had been unable to resolve their problem. In many cases these respondents had also received help from other sources such as a website, a health or social care service, or by contacting their local political representative to look into issues on their behalf.
- The remaining three had received the majority of their support with benefits issues through health or social care services with which they were involved.
4.3. Respondents had also made use of more informal peer support networks, and had access to support through friends and family, to varying degrees. The sample was heterogeneous with respect to the sources of help they had approached and the reasons they had done so. Therefore this section will look in turn at each type of support, and consider the issues with which respondents approached these types of support, their degree of success in doing so, and the limitations of each type.
Government helplines (e.g. DWP, local authority)
4.4. Respondents had contacted the DWP with enquiries about JSA or ESA, HMRC for enquiries about tax credits, and their local authority for enquiries about Housing Benefit or Council Tax Reduction. Telephone helplines had been used in general as a first point in querying or seeking clarification over a particular issue. Respondents had sought an explanation for payments that had been missed or stopped unexpectedly, or clarification of correspondence that was unclear, either because it conflicted with previous correspondence, or because its meaning or the financial breakdown contained within it was unclear.
4.5. Respondents' experiences of government helplines were mixed; although in general the required information was forthcoming, in some cases those at the other end of the phone were perceived to have been rude and unfriendly:
"To be fair [the local authority] are 98 per cent very good. You get the odd one who's having a bad day, but 98 per cent of the time they're very helpful."
"[The tax credit helpline] is horrendous to deal with. They do not want to be in that job. They're very abrupt, they can't be bothered talking to you, they're just not nice people to deal with, so it's hard to find out that way."
4.6. One respondent said they felt too intimidated to phone DWP; in the past they had got someone to phone on their behalf, and would do so again:
"I would just freak out... Because they make life harder, I've heard a lot of stories about people trying to get through to them, and I just don't want to, because I know that would cause me a lot of stress, so I try to avoid it."
4.7. The helpline operators did not always have the required information. They were most adept at answering specific and relatively straightforward enquiries; less so with more complex issues or more generic enquiries. One participant reported that they received conflicting letters from DWP, but that the helpline has been unable to advise regarding which ones contained the correct figures. Another reported that they had phoned DWP to enquire whether they might be entitled to additional support, but were not able to obtain a definitive answer. One participant commented that in their experience, although the telephone operators have the technology to perform individual calculations, they do not necessarily know how the system as a whole works, and cannot answer questions on this. One barrier to getting complex problems solved is that a caller is unlikely to speak to the same person twice, so there is a lack of continuity:
"You never get the same person twice. If there was a point of entry where you could be allocated someone to talk to, at least you'd have some continuity - that you were dealing with the same person. But when you're going from person to person, and they say 'I'll leave a note on the file', and the next person leaves another note, and then eventually someone who says there's no notes on this file. It's obviously not the most satisfactory situation."
4.8. The other issue with telephone helplines, which several participants noted, was that they could be extremely time consuming and expensive for callers.
"The council is a local number, tax credit is premium, which is a bit of a, considering you're phoning up for these things."
"I've seen me trying to get through because I've not had a payment…you can be on the phone for an hour or so just trying to get through to them."
"It was a struggle but I got the form filled in, I think I actually did it over the phone initially, and then they send you it all out… but it's a stress trying to work out, give them all the details, and having to sit on that automated system, drives me nuts, and of course you get charged for those calls."
4.9. Those without a landline phone also highlighted that accessing these numbers via a mobile phone could be more expensive and less reliable due to poor signal.
MP, MSP or councillor
4.10. Five respondents mentioned that they had consulted a local representative (MP, MSP or councillor) with an issue related to the benefits system. In three cases this had led or contributed to the successful resolution of the issue in question, in one it had not, and the final case was still pending at the time of interview.
4.11. A key advantage of approaching a political representative is their ability to escalate individual cases and bring them to the attention of those higher up than the low-level decision makers who handle most decisions. One respondent had got their local councillor to persuade their local authority to look again at their application for a Discretionary Housing Payment (DHP), which had already been rejected twice, despite their eligibility due to having an adapted property. This intervention resulted in them successfully obtaining the DHP. Another respondent's MP raised a case regarding exemption from the bedroom tax in Parliament, which resulted in a personal intervention from the Prime Minister who wrote to the relevant local authority to confirm that the respondent should be considered exempt under the legislation.
4.12. A political representative could also lend some weight to dealings with government agencies. One respondent reported that an issue with backdated ESA, for which they had been waiting some time, was very quickly resolved after a telephone call from an MSP's caseworker.
4.13. However, whether consulting a representative is a useful thing to do was also partly dependent on the political affiliation and interests of the representative themselves. One respondent, who had approached their MP about being threatened with sanctions at the Jobcentre, did not feel that their MP cared about their situation, and it was not useful to them in resolving the issue. Another reported some discomfort in approaching their MP because they were not from their preferred political party.
General welfare advice services
4.14. Eight respondents reported that they had used their Local Authority welfare rights service, two reported using the welfare rights service offered by their housing association, nine had approached a Citizens Advice Bureau and three had used other local initiatives that provided advice on benefits issues. Respondents approached advice services in general for support at significant junctures: applying for a benefit (in particular those moving from Incapacity Benefit to ESA); appealing a failed application for a benefit (including those appealing to be moved from the WRAG to the Support Group); or faced with a sanction or the bedroom tax. A couple of respondents had also approached an advice service about issues with debt or their mortgage.
4.15. Local authority welfare rights services were particularly highly praised by those who had used them:
"They set the benchmark basically - I think they are the place to go."
4.16. Most said that they were able to arrange an appointment quite easily, although one respondent reported a long waiting list in their local authority. The welfare rights teams were able to help with tasks such as explaining entitlements and regulations, filling in forms and providing representation at appeals tribunals. Box 4.1 contains two case studies of how respondents were successfully supported in challenging decisions that had been made against them.
Case 1: The welfare rights team helped the respondent with the transition from Incapacity Benefit to ESA. They helped the respondent to fill in the initial application form and provide the appropriate information. The respondent was initially found to be eligible for ESA, but placed in the WRAG, despite medical evidence suggesting that they should qualify for the Support Group. This information had been provided, but was not correctly interpreted by the DWP decision maker. However, the welfare rights team helped the respondent with the paperwork for their appeal, and put them in touch with an organisation who could represent them at the tribunal. The matter was quickly resolved at the tribunal, and the respondent was put in the Support Group.
Case 2: The welfare rights team helped a JSA claimant who had been sanctioned for 'non-attendance' at signing on (the appointment had been rescheduled the previous day, but the Jobcentre denied this). Getting an appointment was quick and straightforward. The respondent was appointed a representative who assisted with drafting the appeal and represented them at the tribunal. The appeal was successful, and the respondent felt that it would not have been without this support.
4.17. Key to the perceived success of the welfare rights service was the knowledge and professionalism exhibited by the employees. The ability to provide some continuity of service was also appreciated:
"They took [my ESA appeal] basically from the start right through, and the good thing about that was that it was the same person who helped me right from the start, right through to representing me at the appeal."
4.18. Some respondents also cited their Housing Association as a good source of support with benefits issues. Welfare rights officers within the housing association were able to offer similar services to tenants as the local authority services. One participant reported that the welfare rights officer from their housing association was able to fill in the necessary forms for the transition from Incapacity Benefit to ESA, and for their subsequent appeal to be moved from the WRAG to the Support Group. Another participant was impressed that their housing association proactively wrote to them when the bedroom tax was introduced, with an explanation of how to apply for a DHP.
4.19. Local third sector organisations providing advice on benefit issues were also identified as a source of support. One respondent was receiving support from such a service regarding an appeal against being rejected for PIP, and another reported that they had been assisted in their application for a Blue Badge. One respondent who had used a local service in the past commented that this type of initiative can have advantages:
"It's the type of area that needs something like that and they have been there for fifteen years, maybe more. It's a long standing thing so people know where to go."
4.20. Respondents' experiences with Citizens Advice Bureaux (CAB) were more mixed; although some had received good support, others had not. One participant reported that someone from the local Citizens Advice service had visited their house to assist them with filling in an application for ESA, which they had found useful, although the respondent had also expressed some doubt as to whether the service had adequate resources to do the same if an issue were to arise now. Another participant was currently receiving support from their local bureau with an appeal against a demand for repayment of Income Support, and they remarked that they had found the CAB to have a good breadth of knowledge, and had assigned someone with the appropriate expertise to help.
4.21. However, others expressed disappointment with their experiences of trying to access advice from CAB. Two respondents reported being given wrong information, and they along with others expressed some distrust as to whether the information they received at a CAB would be accurate. Those who had used local authority welfare rights services as well expressed a strong preference for going to a professional welfare rights officer rather than a "well-meaning amateur". There was reported variation in the quality of advice not only between bureaux, but also within them, depending on who was available that day:
"It depended on who you got [at CAB], sometimes you would ask for help with a form and it would look like it had been filled out by a two year old… And you'd make an appointment with somebody who'd helped you before, and you'd turn up and they weren't there."
4.22. Some bureaux offered the facility to make an appointment, although not necessarily with a specific advisor. Others did not offer this at all, which made accessing the service more arduous, as it involved longer waiting times, and made it more difficult to arrange someone to accompany them:
"The only problem is you can't make an appointment, so you have to just queue up outside, I was about an hour each time waiting. We got there [half an hour before it opened] just to queue up… It would have been easier [to make an appointment], because my mum came with me and she had to go to work. But it probably wouldn't work because they decide on the day who is the most suitable person to deal with [each client]."
4.23. Some respondents also reported long waiting times for accessing CAB services, and a perception that the service was simply not suitably well-resourced to offer high quality support and advice:
"I couldn't sleep at night, I couldn't wait ten, twelve weeks… Horrendous waiting list… It's not CAB's fault, it's because all of a sudden you're left with 100,000 people in [local area] who need help because their benefits have been stopped."
"Citizen's Advice is meant to be good, but you can never get to talk to them because they're so busy. [I haven't tried to get an appointment] for a long time, but I've heard from friends who say you're not going to get through, it's not going to happen. They do their best, but they are a charity."
"There's enough artillery on the other side of the fence, if you put a foot wrong you've got the whole power of the state against you! But when you need a bit of help there's not a lot there. One of the big problems is that they can be understaffed and under-resourced, and they can be totally overwhelmed."
Health and social care services
4.24. For most of the respondents claiming ESA, their GP, and in some cases specialists, had played a role in their application by providing supporting medical evidence. A key strength of medical involvement in an application is that medical professionals have the specialised knowledge and terminology surrounding people's conditions, and can communicate this to the DWP in a way that a lay person perhaps cannot:
"I didn't get a medical for ESA, because I've got a really good GP, who said if I go to that…my symptoms are going to be really bad. And [DWP] actually listened."
4.25. Some respondents had more informed and proactive GPs than others. In some cases their GP had informed them about benefits and support services:
"I'd been self-employed, and I hadn't bothered getting any benefits because we were getting the Child Tax Credits, and I wanted to try and keep the business running. And the doctor when we were discussing it, he said are you on ESA or any benefits, and I said no, and he went 'you what?'… It was the ESA he told me to claim, so I made a claim at that point."
"He asked if I would like to get in contact [with specialist organisation], and he actually came up the day I was meeting [support worker] because having to sit and tell a stranger things, it can be a wee bit daunting at times. So [my doctor] came up with [support worker], and after the first visit it was fine, and it was every month I saw her."
4.26. However, others reported that their GP knew little about the system. Constraints on resources also meant that GPs were not always able to offer the help they potentially could, such as providing or co-ordinating evidence in support of a benefit application:
"I spoke to my GP about [my ESA review], and I can understand what she was saying - 'look, we're GPs, to add on all this pressure…', and I get frustrated that I have to keep going back to my GP to get all these letters, I shouldn't have to keep constantly proving my disabilities to these authorities. Once they know I'm not going to improve they should leave it, but I still have to keep going back."
"The last time they were very proactive. Whether she would be the next time I don't know, because with the health changes they're only getting to see you for a few minutes. I used to have half hour appointments… I don't know what's going to happen when these benefits are up for renewal, because they just don't have time."
4.27. For respondents who receive visits from carers or support workers due to ongoing support needs, this was cited as a source of help or signposting for benefits issues. Two respondents reported that their support worker had helped them to fill in their benefit applications, and another said that their requirement to attend an ESA assessment was withdrawn after their social worker had contacted the DWP. One respondent initially received benefits advice through their daughter's special needs school, who also put them in touch with a key worker, who they had found to be well-informed and has helped the respondent to apply to sources of support they had not been aware of.
4.28. Most of those in the study who were receiving or applying for disability benefits did not have this kind of ongoing support, but for those who did it was an important source of help with benefits issues.
Third sector organisations supporting specific groups
4.29. Another source of help with benefits was third sector organisations (TSOs) that offer wider support to those in specific circumstances, such as having a particular disability, but who could also help and advise on benefits issues. Nine respondents had received help with benefits issues from such an organisation; three from an organisation dedicated to their particular illness or condition, two from a wider disability organisation, two from advocacy groups, one from an organisation that supports parents and one from an employability provider. These respondents had all received help in person; a further three respondents mentioned that they had gained useful information from a newsletter sent out by a relevant TSO.
4.30. Issues dealt with included, but extended beyond, help with benefit applications and appeals. For example one respondent was able to get someone to accompany them to a work-focussed interview at a job centre, which they had been extremely anxious about.
4.31. Being proactive in finding out about change and suggesting options to service users was also a key strength. For example one respondent had thought their son would not be entitled to ESA, but the organisation with which their son was involved suspected that he would be, and filled in the forms on his behalf, resulting in him being placed in the Support Group.
4.32. Another respondent commented that what was particularly useful about the TSO with which they were involved was that they knew about other support services that were available, and brought them in to talk to the service users. The respondent had personally benefitted from being put in touch with charity that deals with debt issues, as well as another that offered advice on reducing utilities costs.
4.33. Depending on the format of the service provided by the TSO, there was in some cases an opportunity for those using the service to meet others in a similar situation. This had given them access to many of the benefits of peer support and the exchange of useful information (see section on peer networks below).
4.34. Although most of those using employability services were doing so to move off rather than claim benefits, one respondent had received useful support and information regarding benefits in the transition to work. The employability service had explained to the respondent about tax credits and how to apply for them, and also about the four week Housing Benefit run-on available for those moving into work. The service had also helped the respondent to obtain food vouchers to help bridge the five week gap between JSA ending and their first wage. After moving into work they also periodically received follow up calls to see how they were managing.
4.35. One respondent summarised the key strength of TSOs as a combination of good, specialist knowledge and ongoing support to resolve issues:
"They [service for disabled people] spend time with people on a one to one basis, they keep up to date with what's happening, they're very proactive in finding out what's down the line, and they will spend a great deal of time with someone trying to resolve their problem."
4.36. Most respondents who mentioned TSOs as a source of support with benefits issues had successfully received help from the organisation they approached. However one respondent, who had approached a debt charity due to issues around mortgage arrears, did not, as they reported that the organisation were unable to offer any advice beyond cutting expenditure. The respondent did not feel that this was possible, and was frustrated with this outcome.
4.37. Twelve respondents mentioned that they had got information about benefits online (taking information from a website as opposed to being involved in peer networks online, which is discussed further below). Most used these in conjunction with other types of support, although four respondents said this was the only source of help they had used.
4.38. Sites typically used included national and local government websites, as well as independent sources of information such as the Benefits and Work website. These sites offered information about entitlements, and useful supporting information to use when filling in forms, such as further information about the criteria against which they were being assessed, or a more in-depth explanation about what the questions meant:
"I've done my own research… I see what criteria they're looking for and I adjust my application accordingly."
"They give you a pretty good tutorial about how to [fill in forms]."
4.39. However respondents also reported that the information available online was sometimes of varying quality or insufficient depth. Key to good online information was the ability to access accurate and in depth information:
"There's a lot of stuff online, Direct Gov is usually pretty good, but sometimes they don't go into the detail. I found one local authority website from England… everything they put is detailed and has explanations."
4.40. However, online information was not a suitable form of support for all respondents, some of whom did not have the confidence or IT literacy to access information this way, or whose disability prevented them from using IT:
"No, normally I go face to face with welfare rights officers, I wouldn't be able to cope if I was doing it online, I much prefer face to face."
"I'm not good looking at a screen for any length of time. After about half an hour my eyes start getting sore, my head gets sore… Scrolling stuff actually makes me feel quite nauseous."
4.41. One source of informal support was the peer network; support via a group of other people going through similar experiences. This is largely distinct from support of family and friends who are not in the same situation, although the distinction is not watertight; respondents had met people through support groups who had become friends, or had introduced friends experiencing similar issues to peer groups.
4.42. Eleven respondents said that peer support groups were a useful source of support with benefits issues; six were part of groups that met in person, four were members of online networks, and one respondent was part of both. Most of those using online groups had some sort of mobility limitation, so this was an important way for them to access this type of support. In many cases, support flowed both to and from respondents, or even predominantly from them.
4.43. The groups had been formed in different ways; some deliberately around welfare issues, others around more general issues affecting particular groups, and some which had a different purpose but nonetheless provided opportunity for a forum of people experiencing similar issues (for example a drama group for people with disabilities).
4.44. Effective peer support groups drew on a pool of experiences to create a rich and free resource to help those experiencing benefits issues. However, although information was exchanged, the primary benefit of these groups was to share experiences of, and see how others had experienced, welfare reform, rather than to be a source of in depth or accurate information about policy change. This was an important kind of emotional support for those going through difficult situations such as appeals.
"A lot of people on there have experiences of their own mental and physical health, so it's people's experience with the benefit system that they can then share. There's people there who work within the system who can help, but it tends to be the mutual support more than anything."
"It may not be the most accurate place to get information, but it's a place you can talk to people who have been through these experiences".
"When you know somebody's in the same boat, it maybe takes a bit of the panic off."
4.45. There were however some downsides to being part of support groups. One respondent commented that one of the online groups they were a member of had a tendency to be very negative, and that this undermined their own attempts to keep themselves positive. Furthermore, although reading others' experiences made respondents feel less alone, there was a sense that it was also contributing to their anxiety about welfare reform; respondents often made reference to stories they had heard online or through their networks when discussing their own concerns about future changes.
4.46. Three main barriers emerged to setting up and maintaining a successful peer network. The first was the recruitment of organisers capable of contributing the necessary time and energy on a long-term and consistent basis. This is particularly challenging with disability networks:
"There are a lot of people who'd like to help but they're physically not good…. You've just got to be empathetic about people's conditions, but my concern is the continuity and future development of [organisation]. That's where we need people who are unobstructed by life's challenges from a physical point of view… we don't necessarily take advantage of all opportunities to recruit people."
4.47. The second barrier, particularly with a view to helping people deal with benefits issues, was that not everyone is comfortable discussing financial issues with strangers. The third challenge was letting those who do wish to talk about these issues know that relevant groups exist. One respondent said that a network that they were involved in advertised with posters in a hospital that most of those with the relevant condition attended. Another respondent said that they might try to advertise the network they were involved with in the newspaper, although observed that the most obvious way to alert those with benefits issues to local sources of support would be to include a list of these in communications from the DWP.
Family and friends
4.48. For the majority of respondents, friends and family, where they provided any support, were a source of emotional support in dealing with the stresses of the welfare system, rather than a source of information or advice. Those with the strongest informal support networks had friends who could offer quite intensive emotional support, even if they did not themselves know the answer to an issue:
"I arrived [at a friend's] in tears, I was so stressed out I couldn't sit and work [Housing Benefit] out, so she sat down with me and did all the calculations… I didn't want to go up to the Council offices but she said no we're going, let's get this sorted. There's people around me who'll do that."
4.49. In most cases, respondents' family and friends simply did not have the knowledge or experience to offer practical help or advice. In some cases this lack of experience translated into a lack of sympathy, and an inability to offer even emotional support:
"[My sister] is not clued up that way, she doesn't know enough about [benefits]. She's always worked, people who've always worked don't know what it's like not to work, so they don't understand how you can be skint. My older brother's a workaholic, he'd think nothing about spending money on whatever he wanted, and they don't get that you can be struggling."
"If anyone's giving advice it's me to them…It's very isolating, but fortunately we've got Facebook groups so we can share information on that."
"They'd be useless because none of them have ever been on the dole. I come from that kind of family… when I think about it, there's not really any member of my family that's unemployed, they all work and they always have worked... Most of my friends are working. I do have one friend that's not working, but she's got a young child, and she's on her own and got no family… I do [offer her advice]"
4.50. There was also an issue of not wanting to discuss personal issues such as finances in depth with family members. Some found it easier to detach completely from their personal life and talk to a stranger:
"The good thing about [general advice service], as opposed to having family and friends that you can count on, is that sometimes you don't want people that close to you to know the ins and outs of [your condition]. So you do have that anonymity, that security that you're not having to explain X, Y and Z to family or friends."
"I feel my mum and dad don't really see how the system has changed, they're of the mentality that you're entitled to it, why do you need to go through all this… they don't understand that you're part of a bigger system… So [getting help with forms from an external organisation] was something I was in control of, and it was separate from my family life, so [staff member] was a big help with that."
4.51. Some respondents simply did not have friends or family members they could turn to for help or support with any problem, welfare related or otherwise. This may have been because their families were dead or estranged, or present but unwilling or unable to help, or in some cases mobility or health issues limited the extent to which they were able to have social interaction with others. This type of informal support, whilst extremely valuable to those that received it, was simply not an option for others.
4.52. Although many of the issues arising here are specific to the type of support being accessed, some general themes emerged about looking for support, and the barriers that might be encountered to doing so.
The desire for 'insider' information
4.53. All the different forms of support discussed above had different contributions to make to the support needs of the respondents. However, beyond the specifics of the type of support respondents used, some commonalities emerged in what respondents were looking for, and why the support they received was valuable to them.
4.54. Two key aspects of this support emerged. The first was the need for support to relieve some of the cognitive strain of the demanding process of interacting with the benefits system, the application process, and in many cases subsequently challenging the decisions of the system.
4.55. Secondly, and perhaps more crucially, respondents valued being able to obtain what they saw as 'insider' information about the application process. They wanted someone to translate documents and communications from the language of the benefit system into words they understood, and in some cases in the other direction as well, employing the right terminology to best communicate their situation to the DWP:
"I've always found it's much better to have someone who's got expertise and the terminology."
"She actually offered to do the submission, I said you don't need to do that, I wrote the submission, sent the draft to her, and she added some comments to it… so I thought it was worthwhile that she reviewed my submission, and I would do the same with PIP."
4.56. Respondents spoke about being able to obtain information about what the questions on a form 'really' mean - something they perceived as some sort of deliberately hidden information - and how the benefit criteria related to their own personal circumstances:
"That's where the website is good because what you think they're asking, it's specifically phrased in a way that you think they're asking for something other than they are. So the tick boxes are really the wrong way round, it's nasty."
"The great thing is they're very good at pulling out information you wouldn't think of adding… She then sent me two copies, one to send away and one to have, and the wording, everything about it is fantastic, you couldn't ask for more."
Barriers to support
4.57. Different types of support also had different barriers to access, but a number of barriers emerged more generally to accessing support. The first point to consider is that seeking help with benefits was not necessarily the first priority of those in need of finding out about and applying for entitlements. Although some respondents had lifelong conditions, for others the need to apply for benefits had been precipitated by a life event such as an injury or falling ill, or a relationship breakdown. Thus in some cases, dealing with the immediate consequences of these situations was the first priority, and it was only later that respondents began to address issues such as benefits.
"I must admit when I was diagnosed and for a long time after that the focus was on maintaining my work, maintaining my family life… and it was only latterly when I was made redundant that I actually went to [organisation]… I probably should have [gone earlier], I think it would have benefitted me significantly. Not only from a physical point of view… but to get advice and knowledge in terms of benefits."
"Initially [it did not occur to me to seek benefits advice], because I was in shock! And even though I stopped work, for the first few months I could barely walk, it was three months before I was able to walk any distance… So at the time I hadn't even thought about it, because I was just so in shock [and had a little bit of holiday pay]… I never really thought about it until later on."
4.58. The second barrier to accessing support is physical accessibility. Some respondents struggled to leave their house, and so visiting an advice service or TSO was not necessarily an option for them. Given these issues, being able to access support over the phone had been helpful to some. However, even for those without mobility issues, the option to address minor issues with a quick telephone call instead of a service visit was appreciated:
"One of the good things about it is that if you phone up, you can actually get advice over the phone. So it might be something that can actually be dealt with over the phone, and if not you can make an appointment to go and see someone and things like that. But a lot of it can be done over the phone."
4.59. Three respondents with limited mobility had also appreciated receiving a home visit from a welfare rights or advice service.
4.60. One reason the respondents did not necessarily seek out advice in the first place, even if they were struggling, was pessimism about what they might potentially be entitled to, and the perception that it would not help:
"Much as there are a lot of benefits available, it's really for people who don't have any savings, so I'm excluded from those… I think I've already been there and done that. You can continue going round and round a lot of different organisations but it gets to a point where… if you have savings it's difficult to achieve that."
"I suppose I could have gone to citizen's advice… but when I went to the job centre, there wasn't any advice [about what I could apply for], so I just took it that I wasn't entitled to it."
"I consider my situation very clear cut and straightforward. If you've got part-time job and you've got a family, then other things come in, but I don't have any of that, I'm not disabled, so I think I'm very easily categorised. So I'm not aware of whether there are things out there I should be aware of. I don't think there are."
4.61. In some cases respondents may have been correct that they were not entitled to any further benefits. However, in some case respondents' distrust of the system meant that they did not want to trigger any changes to an arrangement they had in place by making an enquiry:
"I'm in the avoidance phase at the minute, I'm putting my head in the sand and hoping it'll go away, but it is there. I don't know, I maybe should ask somebody. I'm just so happy that I'm being left alone, I don't want to cause more waves."
"I wouldn't go to any organisation. You learn not to do that, because you go there with a specific thing and then things grow arms and legs…people mistrust them."
4.62. A further barrier to support was difficulty in admitting to someone that they had a problem. This was not a huge issue in this sample, as in most cases the urgency of a need for help had outweighed any inclination not to go. However, some talked about being initially wary:
"The first time I went [to local authority welfare rights about debt issues] I felt so mortified… there was a woman who was very, it probably wasn't her it was probably the way I was feeling, so whether it was me feeling that or her I don't know, how could you be so silly… I felt naïve, and I felt as if she was kind of judging me, like she was thinking I can't believe you let this happen, but it was probably me feeling that way."
"I was a bit wary at first, but I'm glad that I did approach them, because they've been a big help… it's the depression, the anxiety I had at the time I was referred, it was like someone new to talk to, new people, you just want to close in on yourself, you can't go it… but if I'd known what it was like I wouldn't have shied away from it. It took me a few weeks to make the call, and then it took a while for them to get in contact… [they were] really warm and welcoming, they don't push you to do anything, they tell you what they've got and let you make a choice."
4.63. Respondents appreciated and felt most comfortable with services that were professional, but also approachable, friendly and trustworthy:
"I think just the whole ambience of the place, the staff are very trustworthy, very caring, just about everyone loves their job, they love working there… so yeah, I've been going there so long now that I think the first place I would go for advice would be someone there."
"I find their attitude is very professional, they're very good at what they're doing, and I think I have faith in them."
Publicising sources of information and support
4.64. A final issue around support was the need to make more people aware of their entitlements and sources of help available to them. As one respondent put it, with regard to information about benefits:
"It isn't posted on walls for you, you have got to find it. It's not there for people."
4.65. In many cases, respondents had found out about advice and support services in quite a haphazard way; services were mentioned in passing by acquaintances, or in one case a respondent had happened to notice, while driving around, a poster on a side street advertising a relevant service. Respondents felt that this kind of information should be more widely advertised; public places such as GP surgeries and libraries were suggested, the more sources the better in order to reach the widest audience:
"It would be better if it was more in your face, because a lot of people won't ask, they might think they'll look silly… or they just don't like to ask for help."
"I have never seen an advert [about disability benefits on the television]. They keep very quiet about all these things, and I think there must be a lot of people who are entitled to disability benefits but don't know they are… It's all very well saying go to citizens advice or read the Benefits and Work website, but when you don't know these things exist?"
Email: Alison Stout
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