A new deal for welfare: Empowering people to work – response from Macmillan Cancer Support

1.  Summary of recommendations

Macmillan Cancer Support shares the Government’s objective of supporting sick and disabled people to return to work. However, we would like to see stronger safeguards in the new benefit gateway to prevent cancer patients from being unnecessarily required to undertake work-related activities and a stronger emphasis on getting employers to recruit and retain sick and disabled staff.

1.  The Government should provide assurances that NHS condition management programmes will be adequately funded to ensure that patients are treated without delay.

2.  The efficacy of Pathways to Work should be measured against sustained job outcomes, not just the number of job entries.

3.  The Government should provide a joined-up package of occupational health and business advice and support for small businesses. This package should include access to a rehabilitation component within the Access to Work (AtW) scheme for employees who have been recently incapacitated but who do not yet meet the existing AtW disability criteria.

4.  The Government should increase investment and staffing in rehabilitation services to ensure that patients have quicker access to these services and the scope of rehabilitation services should be broadened to encompass work-related activities.

5.  DWP should put in place procedures to ensure that there is sufficient information to make a decision on waiving and deferring the initial work-focused interview.

6.  There should be a statutory exemption from conditionality for ‘people recovering from major surgery or undergoing and recovering from regular hospital treatment for serious or life-threatening conditions’.

7.  Cancer patients should be exempt from conditionality for a minimum period of 12 months.

8.  Terminally ill claimants should be exempted in law from both the new medical assessment as well as all work-related conditionality and should immediately be fast tracked onto the support component of ESA.

9.  In its review of the medical assessment, DWP should specifically consider how the benefit eligibility assessment can be improved for claimants with fluctuating conditions.

10. The three and six month retrospective qualifying periods for DLA and AA and the six month prospective test for DLA for cancer patients should be waived.

11. The hospital downrating rules should be changed so that patients do not lose their DLA and AA after 28 days in hospital.

12. The Government should ensure every cancer patient is offered specialist benefits advice at diagnosis and at appropriate points in the cancer journey.

13. Jobcentre Plus should offer routine benefit checks to all sick and disabled claimants – not just those who are considering returning to work.

14. There should be a time-limited amnesty on medical testing for claimants who start voluntary work where it is an agreed part of their action plan.

15. The Access to Work scheme should be extended to claimants undertaking voluntary work where it is part of their action plan.

2. Introduction

2.1 Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support and work with Government and a wide range of stakeholders to improve services for people affected by 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.

2.2. Macmillan welcomes the opportunity to respond to the green paper A new deal for welfare: Empowering people to work. About 270,000 people are diagnosed with cancer each year in the UK. Of these around a third – 90,000 people – are of working age. There are currently 39,700 people with a cancer diagnosis claiming incapacity benefits.[1]

2.3. Through our networks of benefit advisers and users, Macmillan has acquired considerable experience of the issues affecting cancer patients claiming benefits.

-  Macmillan runs a benefits helpline for people affected by cancer. In 2005 the service helped 6,455 people.

-  We have also developed 39 benefit advice posts providing a face-to-face service for cancer patients and their families/carers. In 2005 our benefit advice projects assisted 4,309 people.

-  We support Macmillan Cancer Voices, a network of about 400 people affected by cancer.

2.4. In order to inform our submission Macmillan has consulted with a range of these stakeholders including people affected by cancer, Macmillan benefit advisers, Macmillan nurses and Macmillan GPs. In addition we conducted in-depth telephone interviews with 15 cancer patients who had experience of claiming Incapacity Benefit (IB). We also drew on early findings from a research study of work and cancer which is currently being conducted by our Macmillan Research Unit in the School of Nursing, Midwifery and Social Work at Manchester University.

2.5. Working age cancer patients face significant barriers to work:

-  Nearly 60% of patients in a survey by the charity Cancerbackup said they wanted to continue working.[2]

-  In a recent Macmillan survey, 28% of cancer patients said that getting or keeping a job was a problem – this figure rose to 38% amongst self-employed people.[3]

-  84% of respondents to the Cancerbackup survey found the side effects of treatment difficult to manage in the workplace.

4. Pathways to Work

4.1. We welcome many of the elements of Pathways to Work, particularly specialist personal advisers for IB claimants, the return to work credit, easier access to the full range of Jobcentre Plus employment schemes, and access to NHS condition management programmes. We are not, however, convinced that the intensive work-focused interview regime should be compulsory. The fact that 10% of claimants who participated in the scheme were existing claimants who had joined voluntarily suggests that compulsion is not necessary if an employment programme is successful and well promoted.

4.2. It is important that NHS condition management programmes (CMP) are adequately funded to ensure they have the capacity to deal quickly with patients referred through Pathways to Work. NHS rehabilitation services are severely under-resourced so it is vital that, as Pathways to Work is rolled out, the funding of these programmes is adequate.

Recommendation: The Government should provide assurances that NHS condition management programmes will be adequately funded to ensure that patients are treated without delay.

4.2. Although the early findings from the pilots are encouraging, we are concerned that the Government has decided to roll-out Pathways to Work before a full evaluation of the scheme has been published. It is not yet clear which components of the Pathways to Work package are most effective and, in particular, how effective the condition management programmes have been. Moreover, while outflows off IB are eight percentage points higher in the Pathways regions, it is still not clear what proportion of claimants are returning to work and, more crucially, how many are able to sustain their return to work.

4.3. The qualitative evidence from the DWP job retention and rehabilitation pilots shows that many people who have been on long term sick leave feel compelled to return to work because of job worries or financial concerns.[4] This is confirmed by the early findings from our research on cancer and work which suggests that many cancer patients are returning to work out of financial necessity even though they are not physically well enough to fully cope with the demands placed upon them in the workplace. If employees are rushed back into work before they are ready and without the appropriate support or adjustments then there is a real risk that they will subsequently have to give up work.

Case study 1

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 a nine week recuperation period, 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.

Case study 2

Claire, 50s, was working as a special needs teacher when she was diagnosed with breast cancer. She had a mastectomy followed by chemotherapy. Although her GP, consultant and occupational health service felt she was not fit enough to return to work, her head teacher was unsympathetic and she went back to work six months after her chemotherapy treatment ended because she was worried about losing her job. Although she had a phased return to work, gradually building up her hours to full time over six weeks, she was not able to cope and the occupational health service did not come to monitor her progress. Eventually, after a further operation, she was unable to continue working having been refused the option of working part-time or taking on more administrative duties.

Recommendation: The efficacy of Pathways to Work should be measured against sustained job outcomes, not just the number of job entries.

5. The role of employers

Consultation question 1: What else should we consider to give the right incentives to employers to provide increased health support to their workforce?

5.1. Macmillan welcomes the recognition that employers have a key role to play in job retention and rehabilitation. The role of employers in job retention and rehabilitation is crucial as sick and disabled claimants have very little control over their position in the labour market. For example, nearly 40% of IB claimants have a mental health problem yet the Government’s own research shows that this group faces substantial employer discrimination. In a 2001 Department of Social Security survey of 1200 employers, only 37% of employers said they were likely to hire people with mental health problems whereas 62% said they were likely to take on people with physical disabilities.[5]

5.2. Whilst the measures to improve employer practice are positive, we feel that the overall strategy for engaging employers needs to be strengthened. Whilst there is a rights and responsibilities framework for claimants, there are few incentives for employers. We do not believe that persuasion policies alone will be sufficient to change the culture and practice of employers. The Government should also consider responsibilities for employers, eg statutory rehabilitation leave or recruitment and retention targets for public sector employers.

5.3. A comprehensive return to work strategy for sick and disabled people must deliver the right type of help at the right time – benefit advice and financial support when someone is undergoing or recuperating from cancer treatment and employment support when they are ready and able to return to work. Although the emerging findings from our current research on cancer and work are very provisional, it is clear that a number of factors contribute to a successful return to work:

·  A reassuring and sympathetic employer who keeps in contact with the employee and re-assures them that they have a job after they have recovered is important. A lack of contact leads to a sense of isolation from the workplace that can be difficult to overcome.

·  Easing people back to work through a phased return to normal duties and hours is also important.

·  Making accommodations and demonstrating flexibility can improve staff motivation, whereas inflexibility can lead to a return to work not being sustained or employee disillusionment.

Case study 3

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 3 months, the option of working from home, and not having to travel as part of the job.

5.4. While there is a powerful business case argument for why employers should adopt good job retention and rehabilitation policies, it does not follow that small or medium-sized employers are able to implement these policies. While it may be easier for a large employer to offer flexible working arrangements for people returning to work after illness, flexibility may not be so affordable for smaller employers. It is harder to say whether measures such as wage subsidies, tax breaks or national insurance holidays would prove effective in encouraging better job retention. Incentives must be well publicised and simple to administer in order to appeal to small employers who do not have an in-house HR function.

5.5. We welcome the proposals to ensure that small and medium sized employers have access to occupational health advice and support. In addition to occupational health advice, small businesses may also need support and advice on business expansion and available financial concessions to enable them to adapt their businesses to facilitate rehabilitation for sick and disabled employees. The Department of Trade and Industry’s Small Business Service provides such advice for small businesses through the Business Link service. DWP should consult with Business Link about providing a joined-up package of occupational health business and financial advice to small businesses to facilitate job retention of sick and disabled staff. Part of the package of support to small business should be advice about the Access to Work scheme (AtW), which has proved to be very successful in enabling disabled employees to move into and/or stay in work. However, the Government also needs to address the gap in the scheme which means that AtW is not available for people with temporary or shorter term illnesses who are not defined as disabled under the Disability Discrimination Act (ie their disability is not considered long-term).

Recommendation: The Government should provide a joined-up package of occupational health and business advice and support for small businesses. This package should include access to a rehabilitation component within the AtW scheme for employees who have been recently incapacitated but who do not yet meet the existing AtW disability criteria.

6. The role of GPs and other health professionals

Consultation question 2: How can we best share the evidence for the role of work in recuperation and good practice regarding sickness certification to medical professionals?

6.1. The proposals for more joined up working between the NHS and DWP, such as the piloting of employment advisers in GP surgeries, are a step in the right direction. However, cancer patients will not necessarily have much contact with their GP during the treatment phase but will usually have regular contact with hospital-based multi-disciplinary teams (MDTs). Therefore, as well as co-locating employment services in primary care settings, it is also vital to ensure that patients have access to employment services in secondary care settings as well. To this end, referral to employment services should be built into clinical pathways, joint health/social care assessments and care plans.