A specialised welfare benefits helpline to support involvement and participation: Responses to INVOLVE s scoping survey April 2014
Contents Page Summary 3 1. Introduction 5 2. Methods 5 3. Level of interest in the proposed service 5 4. Respondents views on accessing the proposed service 6 5. Respondents views on the usefulness of different elements of service 9 6. Estimates of frequency of use of the service 11 7. Size of the organisational budgets 8. Types of organisation 9. Views of who were not interested in accessing the proposed service 12 14 16 10. Sharing the costs of the service across all subscribers 16 11. Final comments 19 About this report This report was written by Kristina Staley, TwoCan Associates for INVOLVE. This report should be referenced as: INVOLVE (2014) A specialised welfare benefits helpline to support involvement and participation: Responses to INVOLVE s scoping survey. INVOLVE, Eastleigh. 2
A specialised welfare benefits helpline to support involvement and participation: Responses to INVOLVE s scoping survey Summary 1. INVOLVE, the Mental Health Research Network (MHRN) and the Social Care Institute for Excellence (SCIE) have been in discussions with Bedford Citizen s Advice Bureau (CAB)about the development of a confidential helpline service. The service would provide advice and support to help resolve any benefit or tax issues that arise around payments for involvement or participation in research, service design or service delivery. 2. Misunderstandings about payments for involvement can lead to benefits being inappropriately stopped or can discourage people from getting involved. Access to a specialist welfare benefits helpline would therefore help individuals and provide a safeguard for organisations. 3. In January and February 2014, INVOLVE conducted a survey of a wide range of health and social care organisations to find out if they would be interested in subscribing to such a service. The survey also asked interested organisations to provide further information to help inform future planning. This report provides a summary of the responses to the survey. 4. 130 people completed the survey on behalf of their organisation. 85% of (110 organisations) expressed an interest in accessing the proposed service. 7% (9 organisations) were not interested in the service and 8% (11 organisations) said they were unsure. 5. The most common reasons said they would be interested in the service were: They thought it would benefit the people who work with them, because patients/ service users often ask for advice on benefits/ tax issues Many organisations do not have expertise in-house to cope with the complexity of the benefits/ tax system and to keep up to date with any changes Some people are deterred from getting involved or participating in research/ service development because they fear this might affect their benefits 6. Overall, the majority of felt a helpline for patients/ service users and a website would be most useful. There was slightly less support for a helpline for staff. 3
7. The two main factors which seem to influence the level of interest expressed by were (a) how often they are likely to use the service and (b) the cost. Organisations which anticipate using the service fewer than 10 times a year expressed less interest than organisations expecting to use it more often. Cost was the main concern for who were uncertain whether they would use the service. 8. The views were very mixed about how best to share the costs of the service across all subscribers. While many recognised that sharing costs according to actual use of the service or the size of the subscribing organisation was probably fair, they were concerned this may be difficult to implement. There was more support for trying to fund the service at a regional or national level. Some felt very strongly that the Department of Work and Pensions (DWP) or National Institute for Health Research (NIHR) should meet the costs. 9. Some recommended that the service is initially set up as a pilot, with proper monitoring and evaluation. They thought this would encourage more interest. 4
A specialised welfare benefits helpline to support involvement and participation: Responses to INVOLVE s scoping survey 1. Introduction 1.1 INVOLVE, the Mental Health Research Network (MHRN) and the Social Care Institute for Excellence (SCIE) have been in discussions with Bedford Citizen s Advice Bureau (CAB)about the development of a confidential helpline service. The service would provide advice and support to help resolve any benefit or tax issues that arise around payments for involvement or participation in research, service design or service delivery. 1.2 Misunderstandings about payments for involvement can lead to benefits being inappropriately stopped or can discourage people from getting involved. In addition, knowledge and expertise on welfare benefits might not be available in-house and giving inappropriate advice could potentially lead to legal challenges against the host organisation. Access to a specialist welfare benefits helpline would therefore help individuals and provide a safeguard for organisations. 1.3 In January and February 2014, INVOLVE conducted a survey of a wide range of health and social care organisations to find out if they would be interested in subscribing to such a service. The survey also asked interested organisations to provide further information to help inform future planning. This report provides a summary of the results. Direct quotes from are in Calibri font. 2. Methods 2.1 An online survey was created using SurveyMonkey. An email invitation to participate in the survey was sent to a wide range of organisations and individuals. People were also encouraged to forward the invitation on to others who might be interested, and the survey was advertised on the INVOLVE website. Responses were collected between 17 January and 7 February 2014. 3. Level of interest in the proposed service 3.1 A total of 130 people completed the survey. Respondents were first asked whether their organisation would be interested in accessing a specialist welfare benefits and tax advice service. 85% (110 organisations) said this would be of interest. The responses are summarised in Table 1. 5
Table 1: Level of interest in the proposed service (n = 130 / 130) Is your organisation interested in this service? % of Yes definitely 59 45% Yes probably 51 40% No 9 7% Don t know 11 8% Total 130 100% 3.2 The were then asked different questions depending on how they answered this first question. The views of the in the different categories (answering yes definitely, yes probably, no or don t know ) are considered separately in the remainder of this report. Not all answered every question. The numbers of who did answer each question and the total number who could have answered, are given in brackets in each table heading. Percentages were calculated according to the number of who actually answered each question. 4. Respondents views on accessing the proposed service 4.1 The reasons expressed an interest in the service, whether definite or probable, were very similar. The most common reasons were lack of in-house expertise, the demand for advice on this issue from patients/ members of the public, and a wish to avoid impact on benefits becoming a barrier to involvement/ participation. The main reason were uncertain about accessing the service was cost. Respondents with a definite interest in accessing the proposed service (n= 59) 4.2 The reasons said their organisation would definitely be interested in accessing this service are summarised below. They are listed in order of frequency, with the most common responses being listed first. The numbers in brackets refer to the number of who gave each response. Respondents reported that: Staff within their organisation do not have expertise in this complex area and do not know where to go to get advice (n=14). Some patients/ service users have decided not to get involved (or have decided not to volunteer for participation in trials) because of the uncertainty as to how this might impact on their benefits. The new service could provide reassurance and thus help boost recruitment (n=9). Patients/ service users would value this service this is an area where organisations often get asked for advice (n=8). 6
They are likely to make frequent use of this service because their organisation works with communities where a large proportion of people are receiving benefits (for example mental health service users and people with multiple and complex needs) (n=3). They believe they have a duty to support the people they involve and providing benefits/ tax advice is one important aspect of that support (n=3). This service could encourage people to accept payment for their time and expenses by helping them understand how to stay within the benefit rules. Some people have turned down payment for fear of impact on their benefits (n=2). Getting this right is one way of helping people receiving benefits to move into paid employment (n=2). Concerns about how to manage the impact on benefits has led to an executive decision not to implement a payment policy for involvement (n=1). Patients/ service users have met with confusion when declaring receipt of travel expenses to the organisations that provide their benefits (n=1). They would hope to achieve more diversity among the people they involve through using this service. It would help to facilitate the involvement of people who are seldom heard (n=1). 4.3 Some said they were keen to access a specialist service rather than relying on local, general services: It is a complex issue varying from individual to individual, and information needs continual updating so accessing a more specialist service makes good sense. Generic services do not understand the needs of people who may want to be involved for very small pieces of work. The people I work with are particularly anxious about being targeted as fit for work as soon as they do anything, because their disability is invisible. 4.4 A number of identified this type of advice as being part of the support that is essential for involvement, and would hope that the service would adopt an empowering approach: We are very keen to establish processes that are friendly and welcoming, but empowering [informing] the decisions that service users need to make about what they do with us and when. 4.5 One respondent commented that work needs to be done in parallel to tackle this issue at a policy level: Ultimately a helpline is a sticking plaster for the real underlying problem which needs resolving, which is that policy in different arms of government is pulling in entirely different directions. 7
Respondents who were probably interested in accessing the proposed service (n=51) 4.6 The reasons said they would probably be interested in the service were very similar to the reasons given by who were definitely interested (see 4.2). They are listed below in order of frequency, with the most common responses being listed first. The numbers in brackets refer to the number of who gave each response. Respondents reported that: Patients/ service users would value this service this is an area where organisations often get asked for advice (n=12). Staff within their organisation do not have expertise in this complex area and do not know where to go to get advice (n=8). Some patients/ service users have decided not to get involved (or have decided not to volunteer for participation in trials) because of the uncertainty as to how this might impact on their benefits. The new service could provide reassurance and thus help boost recruitment (n=3). This service would help to resolve a lot of confusion and conflicting advice on this topic (n=3). This service could encourage people to accept payment for their time and expenses by helping them understand how to stay within the benefit rules (n=2). They would like to avoid staff having to spend a lot of time managing individual casework (n=2). They are likely to make frequent use of this service because their organisation works with communities where a large proportion of people are receiving benefits (for example mental health service users and people with multiple and complex needs) (n=1). They believe they have a duty to support the people they involve and providing benefits/ tax advice is one important aspect of that support (n=1). They would hope to achieve more diversity amongst the people they involve through using this service. It would help to facilitate the involvement of people who are seldom heard (n=1). Having access to advice would encourage staff to offer payment (n=1). They would want to be reassured that they were getting their payment processes right and not adversely affecting the people they involve (n=1). Patients/ service users may not want to share personal information with the researchers/ staff they are working with and may prefer being able to access a confidential service (n=1). 4.7 Some highlighted that they would not feel confident giving advice in this area, and would value the insurance provided by this service: 8
Our organisation is extremely reluctant to take any responsibility for any consequences of payments to individuals in receipt of benefits. I hope this would provide reassurance that individuals were receiving appropriate support. This is such a delicate area that I would not want to try and advise on it myself. 4.8 Again expressed lack of confidence in the advice from local, general services (see 4.3) and reported that this had had an impact on their practice. I often hear reports that even when patients have sought advice from local CABs or JobCentre Plus they haven't received very useful/helpful/supportive info. This situation [relying on general advice] acts as a disincentive for us to actively seek to involve people from health communities or social communities who are more likely to be in receipt of benefits. Respondents who were uncertain as to whether their organisation would be interested in accessing the proposed service (n = 11) 4.9 The majority of who were uncertain about whether they would want to access this service were concerned about the cost (n=5). One of the NHS Trusts stated that they would find it hard to justify the cost when Patient and Public Involvement (PPI) was a small part of their work. Others also reported that: They had negated the problems around payment by paying people in vouchers. As a PPI lead, they were too junior to be able to influence decisions about whether to pay for this service. They had not done much PPI work and this issue had not been raised. 5. Respondents views on the usefulness of different elements of service 5.1 Overall, across all the categories of respondent, the majority reported that a helpline for patients/ service users and a website would be most useful. There was slightly less support for a helpline for staff. Respondents with a definite interest in accessing the proposed service (n = 59) 5.2 Respondents were asked to rate how useful they would find the different elements of the service. The vast majority of the in this category (definitely interested in the service) thought all elements would be very useful or useful (greater than 96%). There seemed to more support for a helpline for the public, than for a helpline for staff or website information (Table 2). 9
Table 2: How who were definitely interested in the service rated the different elements of the service (n = 52 / 59) Rating Very useful Useful Not useful Not at all useful No. % No. % No. % No. % Helpline advice for public 50 96% 2 4% 0 0% 0 0% Helpline advice for staff Website information 38 73% 12 23% 1 2% 1 2% 36 69% 14 27% 2 4% 0 0% Respondents who were probably interested in accessing the proposed service (n=51) 5.3 The vast majority of the in this category (probably interested in the service) thought a helpline for the public and a website would be very useful or useful (greater than 94%). There was slightly less support for a helpline for staff, with 82% thinking it would be very useful or useful (Table 3). Table 3: How who were probably interested in the service rated the different elements of the service (n = 34 / 51) Rating Very useful Useful Not useful Not at all useful No. % No. % No. % No. % Helpline advice for public 21 62% 12 35% 0 % 1 3% Helpline advice for staff Website information 14 41% 14 41% 5 15% 1 3% 20 59% 12 35% 2 6% 0 0% 5.4 Two of the in this category highlighted that a website would be cheaper than a helpline, which may explain the higher levels for support for this option. Respondents who were uncertain as to whether their organisation would be interested in accessing the proposed service (n = 11) 5.5 All of those who answered this question, thought website information would be useful or very useful and all but one thought helpline advice for the public would be useful. There was less support for a helpline for staff, with 44% rating this as not useful (Table 4). 10
Table 4: How who were uncertain about the service rated the different elements of the service Rating Very useful Useful Not useful Not at all useful No. % No. % No. % No. % Helpline advice for public (n=8) 2 25% 5 63% 1 13% 0 0% Helpline advice for staff (n=9) Website information (n=10) 2 22% 3 33% 4 44% 0 0% 4 40% 6 60% 0 0% 0 0% 6. Estimates of frequency of use of the service 6.1 Respondents were asked to estimate how often they might use the service in a year. Many said they did not know and commented that it was difficult to be sure in advance. Among those who did give an estimate, the majority of across all categories thought they would use the service less than 10 times a year. A greater proportion of the who expressed a definite interest in the service thought they might use the service more than 20 times a year (n = 10) compared to those who were probably interested (n = 2). 6.2 The estimates of who were definitely interested, probably interested and uncertain are summarised in Tables 5, 6 and 7 respectively. Table 5: Respondents who were definitely interested - estimates of the number of times they might use the service per year (n = 52 / 59) Likely number of requests for advice per year % of 0-5 10 19% 6-10 10 19% 11-20 7 13% 21-50 6 12% Over 50 4 8% Don t know 15 29% Total 52 100% 11
Table 6: Respondents who were probably interested - estimates of the number of times they might use the service per year (n = 31 / 51) Likely number of requests for advice per year % of 0-5 11 35% 6-10 5 16% 11-20 1 3% 21-50 1 3% Over 50 1 3% Don t know 12 39% Total 31 99% Table 7: Respondents who were uncertain - estimates of the number of times they might use the service per year (n = 10 / 11) Likely number of requests for advice per year % of 0-5 3 30% 6-10 1 10% 11-20 0 0% 21-50 0 0% Over 50 0 0% Don t know 6 60% Total 10 100% 7. Size of the organisational budgets 7.1 Respondents were asked to give an indication of the size of their organisation s budget to help inform future planning. Many were unable to answer this question. Among those who did, the majority across all categories were either small (budget less than 500,000) or large (budget greater than 3 million). 7.2 The responses from who were definitely interested, probably interested or uncertain about using the service are summarised in Tables 8, 9 and 10 respectively. 12
Table 8: Respondents who were definitely interested - estimates of the size of their organisational budget (n = 51 / 59) Size of organisation s budget % of < 500,000 11 22% 500,000-1 million 3 6% 1-3 million 2 4% > 3 million 11 22% Don t know 24 47% Total 51 101% Table 9: Respondents who were probably interested - estimates of the size of their organisational budget (n = 31 / 51) Size of organisation s budget % of < 500,000 5 16% 500,000-1 million 1 3% 1-3 million 2 6% > 3 million 6 19% Don t know 17 55% Total 31 99% Table 10: Respondents who were uncertain - estimates of the size of their organisational budget (n = 10 / 11) Size of organisation s budget % of < 500,000 1 10% 500,000-1 million 2 20% 1-3 million 0 0% > 3 million 3 30% Don t know 4 40% Total 10 100% 13
8. Types of organisation 8.1 Respondents were asked which type of organisation they worked for. A number of were unable to answer this question, as they were unsure how to categorise which type of organisation they worked for, for example if they worked for a research unit jointly funded by a university and a NHS Trust. All of the who did answer this question came from NIHR organisations, universities, a NHS Trust or a voluntary organisation. None reported that they came from local authorities, private companies or any other type of organisation. 8.2 Among the 79 organisations that expressed an interest in the service and identified the category of their organisation, 20 (25%) were NIHR organisations, 24 (30%) were universities, 23 (29%) were NHS Authorities or Trusts and 12 (15%) were voluntary organisations (Tables 11 and 12). Of the 110 who expressed an interest, 31 (28%) did not identify the nature of their organisation. 8.3 The responses from who were definitely interested, probably interested or uncertain about using the service are summarised in Tables 11, 12 and 13 respectively. Table 11: Categories of organisation with a definite interest in this service (n = 49 / 59) Category of organisation % of NIHR 12 26% University 13 28% NHS Authority/ Trust 14 28% Voluntary Sector/ Charity 10 19% Local Authority/ private company/ other 0 0% Total 49 101% 14
Table 12: Categories of organisation who are probably interested in this service (n = 30 / 51) Category of organisation % of NIHR 8 27% University 11 37% NHS Authority/ Trust 9 30% Voluntary Sector/ Charity 2 7% Local Authority/ private company/ other 0 0% Total 30 101% Table 13: Categories of organisation who are uncertain about whether they would use the service (n = 10 / 11) Category of organisation % of NIHR 1 10% University 2 20% NHS Authority/ Trust 4 40% Voluntary Sector/ Charity 3 30% Local Authority/ private company/ other 0 0% Total 10 100% 8.4 Some of the who were interested in using the service categorised themselves as being a NIHR organisation (n = 20; Tables 11 and 12). From looking at their organisation name 12 could be identified as particular types of NIHR organisation. These are listed in Table 14. Table 14: Different types of NIHR organisation among the who expressed an interest in the service (n = 12 / 20) Type of NIHR organisation in this category Research Design Services 5 Research Network 4 Trainees Co-ordinating Centre 1 Central Commissioning Facility 1 CLAHRC 1 15
8.5 In addition, there was also one Biomedical Research Centre (BRC), and one other research network which expressed an interest, but did not categorise themselves as being part of the NIHR. 8.6 Respondents were also asked to provide their contact details so they could be sent further information about the project. These have been forwarded separately to INVOLVE. The numbers of who provided these details in each category are listed in Table 14. Table 14: Numbers of in each category who gave their contact details (n=75 / 130) Type of respondent (total in this category) Number who provided contact details Definitely interested (n=59) 36 Probably interested (n=51) 27 Uncertain (n=11) 7 Not interested (n=9) 5 Total 75 9. Views of who were not interested in accessing the proposed service (n=9) 9.1 Some organisations (n=2) said that the service would not be relevant to them as they do not offer payment for involvement. Others (n=2) expressed a similar view on the basis that they only pay people s expenses and do not pay for their time. 9.2 Three organisations thought this specialist advice should be routinely available through local CABs without incurring any cost. One respondent commented that this was in line with INVOLVE s current guidance which recommends that individuals contact their local CAB or JobCentre Plus for advice prior to getting involved. 9.3 One organisation has a large internal HR/ legal department and therefore has access to this advice in-house. They said they might still be interested in using the service as a back-up. 10. Sharing the costs of the service across all subscribers 10.1 Respondents views on how best to share the costs of the service were very mixed. Some favoured sharing costs according to actual use of the service or according to the size of the subscribing organisation, or both. Others thought that the service should be paid for at a regional or national level. There were also alternative suggestions for resolving this issue. Respondents views on the strengths and weaknesses of these different options are discussed below. 16
Sharing costs according to actual use of the service 10.2 This approach was favoured by some as it seemed to be a fair solution:. It would be unfair to charge organisations that rarely use the service as much as those that use it regularly. 10.3 For organisations who might only use the service one or two times a year, a flat fee per organisation could become prohibitively expensive. Some therefore suggested that organisations are asked to pay a fee according to the number of enquiries they make or are charged per call to the service. 10.4 The who were not in favour of this approach raised the following concerns: It may not be possible to accurately predict the number of times an organisation will use the service, so this will require monitoring, and charges will need to made retrospectively. Charging per call or enquiry could create an unacceptable administrative burden for the service and its users. This approach could be a disincentive to using the service for every individual with a query. Sharing costs according to the size of the organisation 10.5 This approach was favoured by some because it seemed to be a fair solution, particularly for smaller organisations with smaller budgets. They recommended a simple annual fee. 10.6 One respondent suggested encouraging organisations to view the payment as a form of insurance rather than as payment for use of the service: Ultimately one of the major benefits of the service is that it provides what is in effect an insurance policy for organisations - whether or not they have recourse to use the service itself. 10.7 The who were not in favour of this approach raised the following concerns: There may be overlap between organisations making it difficult to decide which organisation should pay, for example in the case of research centres/ units funded by a partnership between a Trust and university. Similarly, who would pay when a Trust or university hosts a NIHR service such as a Research Design Service? There may be only one small department with a limited budget which wants to access the service, even though it may be sitting within a much larger organisation. In such cases it might be fairer to set the subscription fee according to the size of department/ unit rather than the host organisation. The boundaries of an organisation would need to be clearly defined. For example, if the NIHR Central Commissioning Facility (CCF) took out a 17
subscription, would all the researchers funded through its programme grants be eligible to use the service? Some patients/ service users might want to access the service before they are affiliated to any particular organisation. Using a combination of criteria to decide how to share costs 10.8 Some suggested using a combined approach, so that, for example, large organisations making frequent use of the service could pay a flat fee, whereas smaller organisations using the service one or two times per year could access it on a pay as you go basis. 10.9 Having a flexible approach to payment might be a good solution so that organisations have a choice as to whether to subscribe for a limited period of time or whether to pay each time they contact the service. Paying for the service at a regional or national level 10.10 Since each organisation might only use the service infrequently, it might be better to ask regional networks to subscribe, thus spreading the costs much further: I doubt my organisation would be able to afford a subscription as demand for the case work element would be low, but if there was a regional consortium which took out a subscription, we may be able to contribute as part of this. 10.11 Some expressed strong views that this service should be funded centrally, either by the DWP or by NIHR: I strongly believe this should be centrally funded by the DWP which is creating all the problems in the first place. I do not believe cost-sharing is appropriate or workable. We do not feel that a cost-sharing approach is the correct one or an appropriate use of our PPI funds we believe the service should receive central DH/ DWP support/ funding. Central policy [encourages us] to pay for involvement and we believe this to be fair, yet we are hampered in implementing this by the lack of coherent support for those on benefits, and this in turn makes it impossible to safely (or fairly) offer payment to anyone. It would be fantastic if one of the major funders could support this initiative directly. This would be efficient as there would be no need to decide how to handle/check callers who weren't from subscribing organisations and would avoid the administrative overhead of billing, monitoring use, etc. Alternative suggestions for sharing costs 10.12 Alternative suggestions for sharing costs included: Providing contracts that allow an organisation to pay for a specific amount of time from the advisor. Allocating costs in proportion to the size of the organisation s PPI budget. 18
Setting up different levels of subscription for different levels of access, for example Level 1 - web based information (low annual fee), Level 2 - access to advice for staff (medium annual fee), Level 3 - access to case work support (higher annual fee). Including a standard fee within all grant applications with PPI. 11. Final comments 11.1 A number of said that the cost of the service would be the critical factor influencing their final decision as to whether to subscribe. Five thought their organisation would not be willing to pay for the service due to limited budgets. This group included NHS Trusts and a university. 11.2 The other issues that raised are listed below: Patients/ service users have expressed a preference for face-to-face meetings to access confidential support which would not be feasible with this service and may limit its usefulness. Subscribing organisations would need a clear indication of their entitlements in relation to use of the service (for example is it general advice during one phone call or ongoing support to resolve individual cases?). They would want to be sure that the service was accessible and provided comprehensive advice tailored to individual circumstances. It is important that the service is able to support people based outside of England Tax issues for people that are employed or retired and get involved or participate in research are as big an issue as managing the impact on benefits. The service needs to be properly evaluated and set up as a pilot in the first instance this might be a more attractive proposition to subscribers. 19
INVOLVE is a national advisory body that is funded by the National Institute for Health Research to support public involvement in NHS, public health and social care research and development. If you would like to know more about what we do, please contact us: INVOLVE Wessex House Upper Market Street Eastleigh Hampshire SO50 9FD Web: www.involve.nihr.ac.uk Email: admin@invo.org.uk Telephone: 02380 651088 If you need a copy of this report in another format please contact INVOLVE. Email: admin@invo.org.uk Telephone: 02380 651088 This report is also available to download from: www.involve.nihr.ac.uk 20