Select Committee on Work and Pensions Fourth Report


2  Information, advice and guidance

42.  Caring can start suddenly or build up gradually over time. Some people are thrust into a demanding caring role overnight, for example when a family member or partner has an accident or stroke. Others face an increased caring role as an elderly relative starts to require more support or a condition worsens. Regardless of the extent of their caring role, all carers need timely and accurate information, advice and guidance.

43.  In its recently published Strategy for Carers, the Government makes the commitment to "Providing every carer with the opportunity to access comprehensive information when they need to. The information will be easily accessible for all groups of carers, and specific to their locality."[27]

44.  The National Autistic Society (NAS) found that 69% of families they surveyed expressed a need for someone to help them find out what services are available to them and over a third stated that they did not understand the benefits system.[28] A survey of members of the Parkinson's Disease Society found that 77% of carers rated financial advice as 'important' or 'very important', yet only a fifth (20%) had actually received such advice.[29]

45.  The Royal College of Nursing (RCN) stressed that "while information is available if carers choose or are able to look for it, there is a common perception that the support available is inadequate, which results in many carers not even attempting to find out what assistance is out there. When they do, due to complexity of the system, carers can often be very confused regarding what payments they are entitled to."[30]

46.  Research by Carers UK shows that 58% of carers surveyed had missed out on benefits for over 3 years. A similar proportion of carers felt they had missed out on practical support and of those who felt they had missed out, 68% had missed out for over 3 years. Earlier work by Carers UK demonstrated that an estimated £740 million a year in carers' benefits alone could be going unclaimed every year.[31]

47.  The RCN added that not only financial guidance is required; carers also need information on breaks through various respite care schemes, practical support and training to enable them to care safely: "A further problem that arises is that many carers may not realise the scale of the role they have taken on. They are simply carrying out what needs to be done and have just assumed that there is no state help available to them."[32]

48.  Older carers and carers from Black, Asian and Minority Ethnic (BAME) groups are at particular risk of missing out due to a lack of information. The Office of the former Mayor of London stated that: "London has 27% of carers from BAME backgrounds and they have made clear […] that accessing information and advice are issues for them, due partly but not entirely to language differences and the need for translation and interpretation facilities."[33]

49.  Rethink quotes a 2002 report from the Princess Royal Trust for Carers which found that carers of people with a mental illness were more likely than carers of people with physical disability or the elderly to report that they had not been directed to any source of information or support, and that they had no help or support with caring or advice about benefits and grants.[34]

50.  The Mental Health Foundation and the Foundation for People with Learning Disabilities (MHF and FPLD) stressed that "the speed at which carers of people with mental health problems are identified and provided with support is alarmingly slow." They report that a project for carers of people with mental health problems in Southwark recently found that it took on average 5 years for these carers to receive the support they needed.[35]

51.  Access to immediate and continuing information, advice and guidance is a major concern for carers, who often go for years without receiving adequate support. We welcome the Government's commitment to "Providing every carer with the opportunity to access comprehensive information when they need to" and to make this information "easily accessible for all groups of carers, and specific to their locality." We make a number of recommendations below, suggesting how the Government could address current inadequacies in information provision and help meet this commitment.

Quality of DWP services

BENEFIT ENQUIRY LINE, LEAFLETS, DIRECTGOV

52.  DWP aims to make information for carers available through a combination of leaflets, information sessions, the Benefit Enquiry Line and via the Directgov website. In addition, information about Carer's Allowance also appears in other relevant DWP leaflets and claim packs. For example, the Department publishes information about Carer's Allowance in Disability Living Allowance and Attendance Allowance claim packs.[36]

53.  As well as ensuring leaflets are available within Departmental offices or carers' organisations, the Disability and Carers Service works with organisations to raise awareness and to promote Directgov as a source of information. Directgov provides information about Carer's Allowance and a link to the E Service which can be used either to claim Carer's Allowance or to report a change of circumstances. Telephone advice is available either through the Carer's Allowance Unit or the Benefit Enquiry Line.[37]

54.  DWP Disability and Carers Service outreach officers attend events across the country. The DWP Carer's Allowance Unit officer, for example, attended around 80 events in 2007 giving advice and information on Carer's Allowance and other benefits to groups of carers. The Department states that staff in both the Pension, Disability and Carers Service and Jobcentre Plus will encourage eligible customers to apply for Carer's Allowance and carers can access Jobcentre Plus services if they are looking for either employment or training.[38]

55.  However, evidence we received suggests that this information is not reaching enough carers. The Parkinson's Disease Society (PDS) reports that feedback from recent carers' focus groups indicates that carers were not receiving information or advice from the Department. Carers find out about Carers' Allowance from friends, relatives or colleagues rather than the DWP or professionals.[39]

56.  Carerwatch added that the Benefit Enquiry Line is frequently continuously engaged and a source of frustration and delay in claiming the benefits to which they are entitled.[40] Carers UK stated that DWP leaflets do not contain all the information carers need, for example on the earnings limit.[41] The National Family Care Network pointed out that while some of the Government's internet-based resources - for example the information on financial support for carers on the Directgov website - are very impressive, many carers are unable to afford computers and Internet access and so are not able to access this form of information.[42]

57.  The Department's information, advice and guidance services are not reaching significant numbers of carers. We recommend that the Department addresses problems of access to its Benefit Enquiry Line and explores ways to convey the information that carers need in a more accessible way.

DWP ADVICE STAFF

58.  Carers UK and the Citizens Advice Bureau (CAB) believed that, in general, knowledge and understanding of carers' concerns among Jobcentre Plus advisers is low.[43] CAB suggested that DWP staff often struggle to correctly identify, and explain clearly, the benefits that individual carers and their families are entitled to. Its evidence showed that carers experience administrative delays and incorrect advice from both the Department for Work and Pensions and other Government departments. Many carers find the experience of claiming the benefits they are entitled to overwhelmingly bureaucratic.[44]

59.  Ms Pearlman of CAB said "It is fair to say that the Carer's Allowance Unit is generally very helpful, although sometimes there are gaps in their knowledge. But as you spread further through DWP and Jobcentre Plus in particular, then often we see patches where their knowledge is very poor and people are being very poorly advised."[45] Ms West of Age Concern added: "In respect of the Pension Service, we get generally good feedback on the kind of customer service, […] some of the more complicated areas, particularly trying to identify the premiums and the additions, is where there are problems; the staff on the telephone line may not have the training and the knowledge to really be able to help people in a holistic way around the system. They are perhaps good at taking a straightforward pension credit claim but sometimes lacking in the detailed understanding of the other benefits and the interactions."[46]

60.  Carerwatch suggested that carers have reported that Independent Benefit Advice Services (IBAS) and the CAB are more helpful and thorough than Departmental staff in ascertaining whether a claimant is receiving all the financial help to which they are entitled. It stated that IBAS and CAB are also better at taking into consideration the whole financial situation of the carer and the person they care for.[47]

61.  The Government stated in its 2008 Carers Strategy: "In recognition of the vital role that third sector organisations play in supporting carers, and the trust they have among carers, we are committing funding over the next three years to build capacity in the sector at both a national and a local level."[48]

62.  The Committee believes that DWP frontline staff should provide a similar service. The Minister for Disabled People, Anne McGuire, said that the Government is committed to "improving the training for our Jobcentre Plus advisers and we are also committed to putting a carer expert into every Jobcentre Plus district in the same way as we have already a childcare expert in every Jobcentre Plus district."[49]

63.  Evidence suggests that Jobcentre Plus personal advisers' knowledge of carers' issues in general, and the complexities surrounding benefits for carers and care recipients in particular, is low. We welcome the Government's commitment to funding for the third sector and training for professionals in local authorities to support carers more effectively. We welcome the Government's commitments: to training for DWP frontline staff to improve information provision; to advice services for carers; and to placing a carer expert in every Jobcentre Plus district.

MERGER OF THE PENSION SERVICE AND THE DISABILITY AND CARERS SERVICE

64.  In January 2008 the then Secretary of State for Work and Pensions, Rt Hon Peter Hain MP, announced the merger of the Pension Service and the Disability and Carers Service into a single Agency - the Pension, Disability and Carers Service. The new Agency came into existence on 01 April 2008.

65.  DWP states that in advance of bringing together the two Agencies, the Disability and Carers Service had already been working closely with the Pension Service to identify ways that services to customers could be improved.[50]

66.  Carers UK supported the merging of the Carer's Allowance Unit with the Pensions and Disability services: "This should improve knowledge across the service and make mistakes - particularly overpayments - less likely. A more holistic approach to claims will benefit carers and those they care for."[51]

67.  Ms Pearlman of CAB was more cautious: "Although for many people, carers in particular, the merger will be a good thing, we do have some concerns that although 50% of DCS's customers or clients are the same as the Pension Service, 50% are not, and we are really anxious that disabled people who are of working age with children do not miss out from the merger and that the impetus is retained for them."[52]

68.  The merger of the Pension Service and the Disability and Carers Service has the potential to reduce some of the bureaucracy in the system. However, it is still too early to tell what impact it will have and we are particularly cautious about the impact the merger might have on those customers who do not overlap between the two services. We recommend that the Department commission an independent customer survey to assess the potential impact of the merger on carers.

APPOINTEESHIP

69.  Some people with mental illness are not able to manage their own benefit claims. This might be because they do not accept that they have a mental illness, or because they are too ill to organise the claim, or because their life has become chaotic. In these circumstances, a representative can become an 'appointee' to manage their claim and receive their money on their behalf.

70.  Rethink reported that there is low awareness of appointeeship amongst carers of people with mental illness. Failing to address this problem can lead to the person with mental illness, and the person supporting them, living in poverty. Rethink's view is that Jobcentre Plus do not adequately promote this option to carers. Rethink states that telephone scripts do not include a prompt to discuss appointeeship with callers.[53]

71.  There is also a lack of clarity about the application process. Jobcentre Plus literature states that it is necessary for the beneficiary to be interviewed face to face to apply for an appointeeship. However, as Rethink has stressed, in many cases, this is not possible, for the same reasons that they are not claiming the benefit in the first place.[54]

72.  To raise awareness of the appointeeship scheme, we recommend that automated telephone scripts used by Jobcentre Plus are reviewed and amended to ensure that there is a prompt to discuss appointeeship as an option. Jobcentre Plus literature on appointeeship should also be amended to state that, in cases of mental illness, it may be possible to apply for appointeeship without a face to face interview with the beneficiary.

Working with other agencies

WELFARE BENEFITS ADVICE AND HEALTHCARE

73.  Carers UK, Carerwatch and Age Concern all stressed that more needs to be done across all relevant Departments to raise awareness among carers both that they are carers, and that they are entitled to benefits and support.[55] In particular, DWP needs to work better with the Department of Health and others who have regular contact with carers, particularly in the early stages of their caring role. Ms Pearlman of CAB argued that "We often talk about people being hard to reach, particularly in terms of the benefits system, and it is really the wrong way round to look at it because these people are usually seeing GPs, social workers or other professionals, so it is just that the DWP is not able to reach them, not that these people are completely isolated from the system."[56]

74.  A4E's carers survey also suggests that health and social care professionals - especially Social Workers and GPs - would be the most appropriate source of information regarding access to welfare benefits and other support: "Where diagnosis of an individual suggested that they would be likely to require significant amounts of care, suitable information could be provided to the potential carer at this stage."[57]

75.  The Royal College of Nursing and Rethink supported the suggestion that GPs and nurses maintain a register of carers, so they can be easily identified and offered all possible and appropriate assistance.[58] Carers UK stated that "carers are often shocked that there is no single register of carers where they can inform the authorities that they are a carer and get the information they need."[59]

76.  According to a recent survey by Age Concern, in 2006 there were 889 General Practices with some form of linked welfare benefits advice provision (of which 523 were CAB-linked). This amounted to 10.5% of the 8,433 General Practices in England. In addition to those located in GPs' practices, the survey found benefit advice services in 74 hospitals, 93 mental health and 27 other health-care settings.[60]

77.  The vast majority of benefit advice services were provided through short-term funding. The Citizens Advice Bureau reported a 33% decline in GP-linked services from 2005. The survey by Age Concern suggests that financial pressures on Primary Care Trusts appear to be the major reason why such services do not receive ongoing funding after the end of any fixed term funding.[61]

78.  The survey also showed that distribution of services is very variable. For example, Cornwall has no services, but neighbouring Devon has 21 (but none in North Devon). Hampshire has five, five more than neighbouring Surrey. The London Borough of Tower Hamlets has none, while neighbouring Newham with a similar socio-economic profile has 35. The report states that "The huge variability of distribution suggests that there is no over-arching national strategy to develop advice provision in health-care settings and provision is often the result of local initiatives and enthusiasm - something borne out by our interviews and fieldwork."[62]

79.  In its Carer Strategy the Government announced that: "to encourage partnership working between the health, social care and third sectors, we are making a commitment over the next three years to run pilots looking at ways in which primary care trusts (PCTs) can better support carers. The sites will gather evidence of the benefits to both carers and the NHS of better service provision and interaction for and with carers in hospitals, GP surgeries and other arenas. The pilots will seek to enshrine good practice such as:

  • actively involving carers in diagnosis, care and discharge planning;
  • providing greater support for carers at GP practices and acute trusts;
  • working in partnership with local authorities and the third sector to provide flexible support for carers."[63]

80.  There is no mention of welfare benefit advice or DWP involvement in the pilots. We believe DWP involvement in the pilots could address the lack of coordination between the benefits system, the health system and local authorities' Carer's Assessments. This could have benefits in reducing the bureaucracy that carers face, but also in identifying carers who are entitled to additional support.

81.  We believe that health and social care professionals are an appropriate initial source of information regarding access to welfare benefits and other support. We recommend that DWP participates in the planned pilots looking at ways in which Primary Care Trusts can support carers to ascertain how it can work better with healthcare professionals, local authorities and third sector organisations which have regular contact with carers, often in the early stages of their caring role. The Government should develop a national strategy for giving carers advice on benefits in healthcare settings.

"INFORMATION PRESCRIPTIONS"

82.  The Department of Health White Paper Our health, our care, our say published in January 2006 made a commitment to improving access to appropriate information for people with health or social care needs. It stated "We propose that services give all people with long-term health and social care needs and their carers an 'information prescription'."[64]

83.  From this year, information prescriptions will be offered to everyone with a long-term condition or social care need, in consultation with a health or social care professional. The Department of Health's website states that "information prescriptions will guide people to relevant and reliable sources of information to allow them to feel more in control and better able to manage their condition and maintain their independence."[65]

84.  The Minister for Carers, Ivan Lewis, said that the concept of information prescriptions is "currently in the context of development of health reform, but [has] the potential to be far more than that, where individuals, as a result of their contact, for example, with their GP, would have information collected in a holistic way, on one piece of paper, which enables information about that person to be transferred from professionals rather than being constantly asked, as people get incredibly frustrated, for the same information from different organisations and different professionals."[66]

85.  Age Concern regarded it as vital that carers are involved, at a local level, in the development of health and social care 'information prescriptions', and that these 'prescriptions' focus on the needs of carers.[67] Every Disabled Child Matters (EDCM) suggested that electronic prescriptions should enable families to be automatically alerted when key ages or milestones are reached, for example, at age 3 to apply for the high rate DLA mobility component or age 13 to be notified about the 'transition' process: "This proposal is virtually cost-free and would have a significant impact on empowering parents to access services and support."[68]

86.  We welcome the introduction of Information Prescriptions for carers. We believe that carers are best placed to contribute to the development of information prescriptions locally. We recommend that information on benefits for carers and the cared for person should be included in information prescriptions.

National telephone helpline

87.  There is a particular need for advice and support for carers who are outside the local authority social care system, for example those who are caring for someone who is assessed as not meeting local authority eligibility criteria or those who choose not to be assessed for local authority care because they know they have too much capital to be eligible for local authority funded services. Although some local authorities do refer sick, frail and disabled people and their carers to further information and support, the quality varies between areas and many carers do not think to approach their local authority in the first place.[69]

88.  This situation will be improved by the National Advice and Information Service which the Department of Health undertook to provide in the Our Health, Our Care, Our Say White Paper in January 2006.[70] Mr Burke of Counsel and Care said: "We are disappointed that there have been delays in developing the National Carers Helpline."[71] In its Carers Strategy the Government finally announced the timetable for a single national telephone helpline for carers:

"This will provide, via a website and a single national telephone number, easy access to the comprehensive range of information needed by carers. Carers will be helped by the service directly and through signposting to other services that are more appropriate to meet their needs. We are making available £2.775 million per year to fund the service. […]

The helpline and website will be in place by spring 2009. The service will work with other similar services to maximise the value of information services for carers."[72]

89.  However, Ms Redmond of Carers UK noted "that the helpline […] is for England only and, of course, DWP responsibilities are UK-wide. Within the tender it asks the provider to explain how they will turn away calls from Scotland, Wales and Northern Ireland. Really, you need to think very carefully about how you get quality advice to people in Scotland, Wales and Northern Ireland, where the benefit system, employment law, taxation, and pensions are all reserved matters."[73]

90.  The Minister for Carers, Ivan Lewis stressed that "other than benefits, most of these services are devolved, and therefore it is quite a challenge." The Minister for Disabled People, Anne McGuire, added that "at DWP we have an interest in ensuring that carers in Scotland, Wales, and England - Northern Ireland have a slightly different system - are given the benefit of full information on their entitlements. But whether or not it will be as cohesive as you might wish it to be, I do not think we are in a position to say that yet."[74]

91.  We welcome the Government's planned national helpline and website for carers. This will provide important information for carers in England, including those who are not eligible for local authority support. We recommend that the helpline and website provide up-to-date, accurate, comprehensive information and advice for carers on how to access benefits and other services for carers and the people they care for. We call on the Government to work closely with the devolved administrations in Scotland, Wales and Northern Ireland to ensure that helplines providing equivalent advice are rolled out across the UK.

Carers' Centres

92.  Ms Batten of the National Autistic Society emphasised that "in addition to information and awareness about people's entitlements, there is a real need for community-based and practical support for families to help them fill out the forms and go through that process."[75]

93.  On our visit to Australia, we were very impressed by the Commonwealth Carelink Centres (CCC). CCCs are information centres for older people, people with disabilities and those who provide care and services. Centres provide free and confidential information on community aged care, disability and other support services available locally, or anywhere within Australia.[76] The network of CCCs has 65 'walk-in' shopfronts throughout Australia. Many are conveniently located near, or within, shopping centres.

94.  Each CCC has extensive regional networks and maintains a comprehensive database containing information on community aged care, disability and other support services. Shopfronts are operated by public and voluntary organisations that already provide established services within their region. This regional focus enables each Centre to develop an awareness of the entire range of services available, to establish networks with local providers and ensure information is up to date.

95.  There is no national network of Carers' Centres in the UK. The Princess Royal Trust for Carers (PRTC) is the largest provider of comprehensive carers' support services in the UK with a network of 133 independently managed Carers' Centres and interactive websites. The Trust currently provides information, advice and support services to 310,000 carers (some 5% of all carers), including 15,500 young carers (about 11% of all carers aged under 18).

96.  The Committee visited the Harrogate Carers' Resource Centre, a PRTC member. The Carers' Resource has been an independent charitable company since November 1995. It has 56 paid staff and 54 volunteers, a board of seven trustees, and is in touch with more than 5,000 local carers. The core funding comes from the Primary Care Trusts (PCTs), local authorities and about 25 separate funding streams or contracts. The Carers' Resource gives tailored support to carers and encourages professionals to be "carer aware". It provides information, advice and guidance, representation and advocacy - free and in confidence - for all carers. It guides carers to the relevant services which will help them to care, to look after their own health and well-being, to become economically active, or to stop caring (if that is what they feel they must do).[77]

97.  The Government's carers strategy stresses the importance of provision of respite in helping carers return to work. This includes £25 million a year announced as part of the New Deal for Carers for the emergency break provision.[78] Our visits to Harrogate and Australia convinced us of the importance of carers centres in providing information on respite options, including providing information through the internet. We were particularly struck by the challenges facing carers in rural areas; carers centres have an important role to play in helping to overcome the isolation and exclusion from information and service provision that can be a particular problem in these areas. Carers centres also provide support for carers in accessing counselling, which can help them to cope with the range of challenges that they face.

98.  We were also extremely impressed on our visits to carers centres in Harrogate and Australia by the work that was being done to support young carers. It is particularly important that young carers are provided with this support to ensure that they are informed about the respite options available to them, so that they can participate in the activities that prevent them from becoming isolated, and so that they are supported in continuing their education. Schools have an important role to play in identifying young carers and referring them to carers centres for support.

99.  We asked the Minister for Carers, Ivan Lewis, how the Government can address the funding difficulties for Carers' Centres in the UK and he responded: "The Department of Health has a budget called section 64, which it spends with the voluntary sector, and I am doing a fundamental review of that at the moment. It is about £20 million a year. […] One of the things we have singled out in the strategy is in terms of that review of section 64. We are very seriously considering making projects offering emotional support to carers (that is, Carers' Centres) as one of the priorities for that grant aid in the future. We have not made a definite decision on it but we are looking at that [at] the moment."[79]

100.  We have been impressed by the Commonwealth Carelink Centres in Australia and examples of independent and third sector Carers' Centres in the UK. We believe that some Carers' Centres already offer an effective 'first stop shop' for signposting carers to local organisations, services and benefits, and for providing ongoing support as carers' circumstances change. We welcome the Minister's review of section 64 funding. We recommend that the Government takes a more strategic approach to Carers' Centres in the UK with the objective of there being a national network of such Centres, and that it provides adequate core funding to give them financial stability.



27   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008, p10.  Back

28   Ev 157 Back

29   Ev 100 Back

30   Ev 152 Back

31   Ev 139 Back

32   Ev 152 Back

33   Ev 91 Back

34   Ev 133 Back

35   Ev 78 Back

36   Ev 104 Back

37   Ev 104 Back

38   Ev 104 Back

39   Ev 100 Back

40   Ev 127 Back

41   Ev 139 Back

42   Ev 116 Back

43   Ev 71; Ev 139 Back

44   Ev 72 Back

45   Q 69 Back

46   Q 71 Back

47   Ev 127 Back

48   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008, p52. Back

49   Q 202 Back

50   Ev 105 Back

51   Ev 139 Back

52   Q 78 Back

53   Ev 136 Back

54   Ev 136 Back

55   Ev 139; Ev 110; Ev 127 Back

56   Q 72 Back

57   Ev 94 Back

58   Ev 135; Ev 153 Back

59   Evg 140 Back

60   Neil Bateman, Just What the Doctor Ordered: Welfare Benefits Advice and Healthcare, Age Concern England, 2008, p14. Back

61   Neil Bateman, Just What the Doctor Ordered: Welfare Benefits Advice and Healthcare, Age Concern England, 2008, p14. Back

62   Neil Bateman, Just What the Doctor Ordered: Welfare Benefits Advice and Healthcare, Age Concern England, 2008, p14. Back

63   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008, p49. Back

64   Department of Health, Our health, our care, our say, 2006, p114. Back

65   30.06.2008 http://www.informationprescription.info/ Back

66   Q 156 Back

67   Ev 110 Back

68   Ev 124 Back

69   Ev 140 Back

70   Department of Health, Our health, our care, our say, 2006, p178ff. Back

71   Q 9  Back

72   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008, p64. Back

73   Q 13 Back

74   Q 158 Back

75   Q 7 Back

76   See notes of visit in Annex A Back

77   See notes of visit in Annex A. Back

78   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008, p9. Back

79   Q 160 Back


 
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