Select Committee on Work and Pensions Written Evidence


Memorandum submitted by Macmillan Cancer Relief

1.  EXECUTIVE SUMMARY

  1.1  Whilst the early results from the Pathways to Work pilots appear encouraging we are concerned that the Government has decided to roll-out the scheme before a full evaluation has been published. We recommend that the efficacy of the scheme should be measured by the numbers of claimants returning to sustained employment, not just by job entries alone.

  1.2  We are concerned that the discretionary provisions for waiving and deferring interviews do not always work for cancer patients and will not provide a sufficiently strong safeguard to prevent cancer patients being unnecessarily compelled to attend interviews. We recommend that anyone undergoing active cancer treatment or who is terminally ill should be exempt in law from compulsory interviews.

  1.3  The Government's approach is too narrowly focused on supply-side measures to make IB claimants more job ready and there is insufficient focus on getting employers to retain or hire sick and disabled workers. We recommend that the Government should review the financial incentives for and statutory duties on employers to retain or hire long-term sick and disabled workers through more flexible work arrangements and work-based adaptations and support.

  1.4  What claimants need is a responsive welfare system that provides the right type of help at the right time: financial support when someone cannot work and employment support when they are ready to return to work. We recommend that DWP should work more closely with the NHS to ensure that patients undergoing cancer treatment are getting the benefits to which they are entitled.

2.  INTRODUCTION

  2.1  Macmillan Cancer Relief helps people who are living with cancer. Each year around 270,000 people in the UK are told they have cancer. More than one million people in the UK today have had a cancer diagnosis, and more than one in three will be diagnosed at some time in their life. As well as taking action today to support people from the moment they suspect they have cancer, we are shaping the future of cancer care. Our increasing range of services, including our Macmillan nurses, doctors and other health and social care professionals, cancer care centres, a range of cancer information, practical help at home and help with money, is funded entirely through the generosity of our supporters.

  2.2  Macmillan welcomes the opportunity to present evidence to the Committee. Around a third of people newly diagnosed with cancer each year—90,000 people—are of working age. There are currently 37,300 people with a cancer diagnosis claiming incapacity benefits.[17] Most cancer patients of working age do not want to drop out of the labour market. Nearly 60% of patients in a survey by CancerBACUP said they wanted to continue working.[18] However, cancer patients do need time off working while they are undergoing treatment. 84% of respondents to the CancerBACUP survey found the side effects of treatment difficult to manage in the workplace.

  2.3  In order to inform our submission Macmillan consulted a group of cancer patients who currently claim incapacity benefit or who have done in the past. We conducted qualitative telephone interviews with 15 patients who had all been diagnosed with cancer while in employment and had claimed incapacity benefit (IB).[19] Although none of the cancer patients had direct experience of Pathways to Work, most wanted to return to work and had strong views about the proposals for extending the compulsory interview regime.

  2.4  We also held two workshop sessions in Scotland and England to obtain the views of benefit advisers working with cancer patients in Macmillan-funded projects. Macmillan funds and supports benefit advice 18 projects—employing 44 benefit advisers—throughout the UK. In addition we directly run our own benefits helpline. Our advisers assist over 10,000 cancer patients each year and therefore we have a wide accumulated experience and in-depth knowledge of the problems cancer patients encounter with the benefit system.

3.  LEARNING THE LESSONS FROM PATHWAYS TO WORK

  3.1  Macmillan welcomes the statement by the Department for Work and Pensions (DWP) in its Five Year Strategy document that it "rejects calls to abolish the benefit, cut its rate or limit the time for which it is available".[20] We also welcome many of the elements of the Pathways to Work programme, in particular the use of incapacity-specialist personal advisers, the closer links with the NHS, and the back-to-work credit. However, we have reservations about the significantly onerous degree of compulsion, particularly the intensive work-focused interview regime in the first six months of the claim. We are yet to be convinced that extending compulsion is the most effective or desirable way to help incapacitated claimants return to work. We are also concerned that the level of compulsion may be ratcheted up yet more if, as is proposed in the DWP Five Year Strategy, incapacitated claimants will be compelled to undertake "work-related activities".

  3.2  According to the Government the number of IB claimants in the Pathways to Work pilots leaving benefit altogether at six months has increased by 8-10%, the number of recorded job entries has doubled, and five times as many claimants are taking up elements of the "Choices" package of employment schemes.[21] While these early employment outcomes appear to be very promising, we are nonetheless concerned that the Government has decided to roll out the Pathways to Work programme before a full evaluation of the pilots has been published. It is still not clear, for example, what proportion of the claimants entering jobs in the Pathways to Work pilot regions were still in work six months or 12 months later. People adjusting to disability or recovering from long-term sickness are often keen to return to work, but without the right adjustments, adaptations and support, they may find it difficult to stay in employment over the long-term. While early intervention sounds good in theory there is a danger that claimants may be rushed back to into work too early as the following case study illustrates:

    Case study. Tony, 54, was working as a manager in a construction company in Berkshire when he was diagnosed with a liposarcoma (soft tissue tumour). The tumour was removed by surgery and, after nine-week recuperation, he returned to full-time work. However the long hours and high pressure of the job caused him pain and chronic exhaustion. Eventually he was forced to give up work.

  3.3  Macmillan recommends that the efficacy of the programme should be measured by the numbers of claimants returning to sustained employment rather than by job entries alone.

4.  REFORMING INCAPACITY BENEFITS

  4.1  Macmillan's main concern with the Government's proposals for reforming incapacity benefits is that they represent a significant increase in the degree of compulsion for claimants. The cancer patients and benefit advisers with whom we consulted all strongly felt that patients receiving cancer treatment should not be subject to the intensive series of work-focused interviews that are currently obligatory in the Pathways to Work pilots. We asked cancer patients who had claimed IB what they thought about the proposals to compel claimants to attend five to six interviews at the start of their incapacity claim. Although most of the patients we interviewed wanted to return to work, all those who expressed an opinion were strongly opposed to the idea of compulsory interviews at the start of their incapacity claim. For many cancer patients this coincides with their treatment phase or recovery period and would be wholly impractical and inappropriate. The following quotes show clearly that compulsory interviews would not only be inappropriate for cancer patients but would add to the stress of coping with the disease and could impact on recovery time.

    "It would have been a struggle. Your energy levels are really low and it would've been an added stress both mentally and physically . . . You shouldn't be required to attend any interviews for the first year at least". Catherine, 49, London

    "I think it's terrible. Absolutely disgusting . . . After you've been diagnosed with cancer there is a huge emotional impact. You head's everywhere. You have surgery, chemo, radiotherapy and your head's all over the place and the fatigue is unbelievable. You can't expect people to go to interviews." Jane, 57, Aberdeenshire

    "That would have been ridiculous . . . It's difficult enough dealing with a life-threatening illness". Naomi, 39, Bristol

    "It wouldn't have been possible. When I made the application I was still undergoing chemotherapy and in that six months I also had surgery and radiotherapy . . . at that time I was very stressed and was suffering a lot of fatigue. I would have been angry if I'd had to go to these interviews." Lorna, 59, Cheshire

    "I couldn't have committed to anything. You just don't know if you're going to feel up to it. The tiredness means you can't say if you're going to be right to work on Wednesday" Julia, Fife

    "I physically wouldn't have been able to attend . . . I would have felt insulted". Colin, 31, Lancaster

    "The thought of attending a work-focused interview at that point would have been absolutely out of the question. I was half-asleep most of the time . . . All your mental and physical effort is concentrated on getting better". Barry, 59, Bedfordshire

    "I don't think I'd have been psychologically or physically fit enough to attend". Terry, 50, Watford

  4.2  We are particularly concerned that the provisions for waiving and deferring interviews, which were introduced when the obligations on claimants were much less onerous, may be insufficient to safeguard cancer patients from being inappropriately compelled to attend interviews. Given that, under the Government's proposals, claimants with "more manageable conditions" will be subject to a more intensive regime of interviews and other work-related requirements, it is vital that the waiver and deferral provisions are working properly. Although Jobcentre Plus officials have discretionary powers to waive or defer interviews, in our experience this is not always happening. Macmillan benefit advisers have told us that they often have to intervene on behalf of patients undergoing treatment in order to get interviews waived or deferred. Most cancer patients, however, do not have access to an adviser and therefore will not know that their interview can be waived or deferred.

  4.3  We also have alarming evidence that terminally ill patients are being required to attend work-focused interviews. When the Welfare Reform and Pensions Bill, which introduced the compulsory work-focused interview provisions, was being debated in standing committee stage the then employment minister Andrew Smith made it clear that it was not the Government's intention that terminally ill people should be required to take part in interviews. Mr Smith stated that "there will be circumstances, such as terminal illness, in which it will not be appropriate to have an interview, but other circumstances in which it will be".[22] However, Macmillan benefit advisers and the Association of Hospice and Palliative Care Social Workers have told us of cases where terminally ill patients have been called in for interviews.

    Case study. A benefits adviser in the west of Scotland had a client who was terminally ill, receiving DLA under the special rules, and attending a hospice. She needed to make a new claim for Incapacity Benefit. The adviser telephoned the local Jobcentre Plus office on behalf of her client but the official refused to waive the interview, even though the client was terminally ill and bed-bound, and suggested sending out a visiting officer.

  4.4  The legislative provisions governing waivers and deferrals do not explicitly exempt specific groups by disease/disability type from the compulsory work-focused interview requirement. It is left to the discretion of Jobcentre Plus staff to decide whether to waive or defer an interview if it "would not be of assistance" or "appropriate in the circumstances". Guidance is available to Jobcentre Plus staff to aid their decisions but we believe that guidance alone is not a strong enough safeguard. In many Jobcentre Plus offices the decision to waive or defer is made at initial contact by call centre staff. A 2003 DWP research report found that, where waiver or deferral decisions are made in call centres, "fewer staff were confident in explaining how they would determine whether a WFI [work-focused interview] was appropriate, and they therefore had difficulty in determining whether or not a deferral would be appropriate". In particular, call centre staff "had difficulty in deciding whether to hold a WFI where customers' circumstances were unpredictable or unlikely to change over the long term".[23]

  4.5  We are concerned that Jobcentre Plus staff may not understand the specific needs of cancer patients and may therefore struggle to judge whether a waiver or deferral is appropriate. It may be more straightforward to postpone an interview if a cancer patient is attending hospital for radiotherapy or chemotherapy treatment. However, it is less clear if a patient is in between courses of treatment or awaiting tests to determine whether further treatment is necessary. Even during treatment the needs of cancer patients are unpredictable and fluctuating, with good days followed by bad days, and consequently there is a danger that Jobcentre Plus officials may make a snapshot judgement of a person's capabilities, as the following example illustrates.

    Case study. Naomi, 39, from Bristol was self-employed when she was diagnosed with breast cancer in July 2004. She has been claiming IB throughout her treatment, which is still ongoing, but hopes to return to work when appropriate. On one visit to a Jobcentre Plus office to deliver some papers she did not look ill at the time and was told by an adviser that "you have to be ill to claim this you know".

  4.6  Macmillan benefit advisers felt strongly that cancer patients should be exempt from the work-focused interview requirement while they were in the treatment phase or else if they were terminally ill. The advisers all felt that the waiver/deferral provisions should not be discretionary. Most advisers felt the best time to offer employment advice and assistance is after treatment has been completed.

  4.7   Macmillan recommends that any patient undergoing active treatment for cancer or who is terminally ill should be exempted in law from the requirement to attend work-focused interviews.

5.  HELPING PEOPLE RETURN TO WORK

  5.1  Most Government employment programmes for sick and disabled people are focused on supply side measures to make IB claimants more "job ready", eg attending work-focused interviews, job broker services, vocational training and work preparation courses. Macmillan believes that there should be far more emphasis placed on the demand side, and in particular on getting employers to employ or retain staff who been sick or have become disabled.

    "To return to work you need employers to clearly understand the limits of what you can do. They need to give you time off for appointments." Lorna, 59, Cheshire

  5.2  All the cancer patients we spoke to had been in work when they were diagnosed and most were keen to return to work after treatment. They already had the skills to return to their jobs but many patients found it difficult to return to full-time work straight away. Most of the patients interviewed felt that support from their employers was the most important thing in order to allow them to return to the workplace. This is supported by evidence from the Macmillan benefit advisers who told us that what many patients needed was a phased or gradual return to work and that employers needed to be more flexible, eg altering working hours and allowing time off for medical appointments. The following case study provides an example of good employer practice.

    Case study. Terry, 50 was employed in a managerial role at BT when he was diagnosed with tonsillar carcinoma. After his treatment and recovery he had interviews with BMI Healthcare (contracted by BT) and agreed a return to work plan which included: a part-time return to work on full pay, no targets for the first three months, the option of working from home, and not having to travel as part of the job.

  5.3  Macmillan recommends that the Government should review the financial incentives for and statutory duties on employers to retain or hire long-term sick and disabled workers through more flexible work arrangements and work-based adaptations and support.

6.  ACCESS TO BENEFITS

  6.1  The thrust of the Pathways to Work approach is to get incapacitated claimants back to work as soon as possible. However, what claimants need is a responsive welfare system that provides the right type of help at the right time: financial support when someone is unable to work and employment support when that person is ready to return to work. When a patient has just been diagnosed with cancer or is beginning a course of treatment what he or she needs first and foremost is financial advice and help with claiming benefits not work-focused interviews.

    "Anyone diagnosed with cancer needs the opportunity to see someone straight away to talk about benefits". Catherine, 49, London

  However, provision of benefit advice is not a priority for either the NHS or Jobcentre Plus. A recent National Audit Office report found that 77% of cancer patients were not given any information about financial benefits even though 48% of those—a third of all patients—would have liked that information. Although the Government's welfare reform philosophy is "work for those who can, security for those who cannot", Jobcentre Plus targets are focused on labour market outcomes—there are no targets for ensuring that those who cannot work are getting their full benefit entitlements.[24]

  6.2  Macmillan recommends that DWP should work more closely with the NHS to ensure that patients undergoing cancer treatment are getting the benefits to which they are entitled.

Duleep Allirajah

28 September 2005




17   Department for Work and Pensions, Incapacity Benefit and Severe Disablement Allowance Quarterly Summary Statistics: February 2005. Back

18   CancerBACUP, (2005) Work and cancer: How cancer affects working livesBack

19   The names of patients interviewed have been changed to maintain confidentiality. Back

20   Department for Work and Pensions Five Year Strategy, Opportunity and security throughout life, Cm 6447 (February 2005). Back

21   HM Treasury, 2005 Budget, Investing for our future: Fairness and opportunity for Britain's hard-working families, HC 372 (March 2005). Back

22   Welfare Reform and Pensions Bill, House of Commons Standing Committee Report, 13 April 1999, col 721. Back

23   Taylor J, and Hartfree Y, (2003) Deferrals in Jobcentre Plus: Research into Staff Understanding and Application of Deferral Guidance for Non-Jobseeker's Allowance Customers, DWP In-house report 126. Back

24   Jobcentre Plus Business Plan 2005-06. Back


 
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