Welfare Reform Bill

Memorandum submitted by Macmillan Cancer Support (WR 15)

1. Executive summary

1.1. Whilst Macmillan Cancer Support welcomes some aspects of the Welfare Reform Bill – including measures to simplify the benefits system – we are concerned that some proposals will mean people living with cancer will be left without critical financial support at a time when they need it most. The impact of this will be devastating for thousands of cancer patients.

1.2. We are concerned that the proposal to time-limit contribution-based ESA for those in the Work Related Activity Group to 12 month s will result in people, who have limited ability to work because their disability or long term condition, losing critical financial support before they are ready to return to work.

1.3. We are concerned that the proposal to double the qualifying period for the Personal Independence Payment (PIP) to 6 months will mean that people with cancer will not be able to get financial support to help with the extra costs they face as a result of being disabled at a time when these costs are greatest . We believe this will particularly disadvantage people who experience sudden onset need s as a result of their condition, such as people with cancer. We recommend these people should be able to apply for PIP at the point of need.

1.4. We are concerned that the Bill does not contain measures that will end the current unjust system where the type of cancer treatment someone receives affects how they are treated in the welfare system. We recommend the Bill introduces changes to extend the exemptions to conditionality for the Employment and Support Allowance to people waiting for, receiving or recovering from , oral chemotherapy or radiotherapy.

2. Introduction

2.1 Macmillan Cancer Support welcomes the opportunity to respond to the call for written evidence on the Welfare Reform Bill. Over nine in ten (91%) households with someone with cancer experience a loss in income or additional costs as a result of their cancer diagnosis. As a result tens of thousands of people with cancer depend on financial support from the welfare system. There are currently 21,530 people with cancer claiming ESA, 82,400 people with cancer in receipt of Disability Living Allowance and 23,460 people with cancer as a primary condition claiming incapacity benefits. [1]

2.2 Every year 2 98 ,000 people are newly diagnosed with cancer, 109,000 of these people are of working age. There are over 700,000 people of working age living with cancer in the UK. There are two million people living with and beyond cancer in UK. This figure is rising by three per cent each year and it is estimated that by 2030 there will be 4 million cancer survivors.

2.3 Macmillan Cancer Support employs 19 advisers in our Welfare Rights Helpline and 224 benefits advisers working within partner agencies such as Citizens Advice. In 2010, our benefits advisers reached over 60,000 people. We have accumulated experience and in-depth knowledge of the problems cancer patients encounter with the benefit system. Our services also include Macmillan nurses, doctors and other health and social care professionals, cancer care centres, cancer information and support centres, a range of cancer information, practical help at home and Macmillan grants to help people with cancer with some of the additional costs they face.

2.4 In order to inform our submission Macmillan commissioned focus groups with cancer patients who have benefited from support from the welfare system and a group of occupational therapists. We have also been advised directly by our benefits advisers.

3. Time-limiting ESA will penalise cancer patients who are not able to return to work within 12 months

3.1 Macmillan is concerned that for many cancer patients a year is simply not long enough to allow them to recovery sufficiently to be able to return to work. As a result of the proposal to time-limit ESA we believe cancer patients will lose vital financial support simply because they have not recovered quickly enough. Macmillan recommends that people with cancer who have worked and paid into the system before becoming ill should be supported without their ESA being means-tested.

3.2 The Government proposes to limit the length of time someone allocated to the ESA Work-Related Activity Group can receive the benefit, without being means-tested, to 12 months. The thresholds for means-testing are such that someone who has not been able to return to work after 12 months, who has a partner who earns just £149 per week or works for more than 24 hours per week, or who has savings of £16,000, will lose all of their weekly ESA.

3.3 The vast majority of people with cancer who are out of work because of their condition want to work. Getting back to work is a crucial step forward in getting their lives back after cancer. But evidence shows that the majority of people with cancer claiming ESA take much longer than 12 months to return to work:

i. Three quarters (75%) of people with cancer placed in the ESA Work-Related Activity Group are still claiming ESA 12 months later [2]

ii. Almost two thirds (61%) still need the benefit 18 months after first claiming it [3]

iii. Just 13% of people with cancer find work within one year of starting the current back to work support programme ‘Pathways to Work’ [4] .

3.4 People with cancer face a range of barriers that impact on their ability to return to work and mean that cancer patients can take longer than 12 months to get back to work:

i. They can experience debilitating physical and psychological effects from cancer and its treatment, including severe pain, fatigue, nausea, fever and diarrhoea

ii. The majority (53%) are not advised by medical professionals about the impact of their cancer diagnosis on their working life and how they can manage their condition

iii. They are not routinely offered the range of back to work services they need such as counselling, re-training and work-placed advocacy

iv. They are less successful in securing workplace adjustments that they are legally entitled to, which help them return to work [5] . This is likely linked to the fact that just 43% employers know that people with cancer have legal protection against discrimination [6] .

Introducing time-limiting as an incentive for return to work will not accelerate a return to work for many patients, rather it will unfairly penalise those who cannot return to work for reasons out of their control. No-one is placed in the ESA Work Related Activity Group indefinitely. Powers exist to send claimants for reassessment and if they do not meet the eligibility criteria – where they are found fit for work – they will be moved off ESA.

3.5 Cancer patients have told us that they do not need to be given incentives to return to work: " My cancer has spread to my bones and I'm told it is incurable. I've had surgery and radiotherapy but have been told that to get ESA now I've got to do job focussed interviews to help get me back into work. I don't need a work ethic, I've had one all my life. I'm still in constant pain and feel tired all the time. I've paid into the system all my working life but the Government seems to expect me to be fit after a year, and if I'm not, take away my support." Chris, diagnosed with lung cancer, Worcester.

3.6 Macmillan benefit advisers say that because they are not placed in the Support Group automatically some cancer patients are placed in the Work Related Activity Group despite being seriously debilitated by their treatment. This is due to ongoing problems with the Work Capability Assessment, which mean cancer patients are wrongly assessed. For example, there are some patients on oral chemotherapy or radiotherapy who have been assessed and despite experiencing very debilitating effects of cancer treatment are placed in the Work Related Activity Group . The negative impact of the proposal to time-limit ESA will compound the issue for these people with cancer.

3.7 The Government have said that the most vulnerable will still be eligible for income-based ESA however the impact of time-limiting on people with cancer will be to push some households affected by cancer in to poverty. The Department for Work and Pensions suggests that 40% of people affected by time-limiting will lose all their £91 a week of ESA, and the average loss for those that will experience a reduction will be £52 a week. [7] For a childless couple the current poverty threshold is £206 per week. By time-limiting ESA for those in the Work Related Activity Group some households may be left to depend on one salary of just £149. If those households have no other income or savings they will fall below the poverty line.

3.8 The evidence shows that the majority of people claiming ESA are in the lower income deciles, suggesting that the overwhelming majority depend on the financial support they receive from ESA . [8]

i. 88% of people who will be affected by time-limiting are in the bottom 5 income deciles

ii. 51% of those that will experience an actual loss as a result of this proposal are in the bottom 3 income-deciles

iii. The average loss for those in the bottom income-decile will be £35 per week. This is a significant drop in income for people who are struggling to make ends meet.

3.9 Macmillan recommends that no time-limit is imposed on people on contributory based ESA in the Work Related Activity Group so that people with cancer are not penalised for not returning to work before they are able.

4. If time-limiting is imposed on ESA claimants changes must be made

4.1 While Macmillan opposes the principle of time-limiting we are also concerned with specific elements of the proposal such as its retrospective nature, the aggregation of the time spent in the Work Related Activity Group and the inclusion of the assessment period in the time-limit:

i. Retrospective nature of the proposal: time-limiting will come in to effect in April 2012. Anyone in the ESA Work Related Activity Group from April 2011 will, if they exceed the means testing threshold, immediately lose £91 a week. This takes into account time accrued in the WRAG before the Bill has received Royal Assent

ii. Aggregation of the time-limit the Bill allows for the time-limit to include an aggregation of time in the Work Related Activity Group regardless of movement in and out of the group. This will penalise those disabled people with fluctuating conditions who may move between the Work Related Activity Group and the Support Group. Macmillan recommends that should a time-limit be imposed it should re-start for any person moving directly out of the Support Group. This will prevent people being means-tested immediately after leaving the Support Group, because they accrued time in the Work Related Activity Group before experiencing a deterioration of their condition.

iii. Inclusion of the assessment period: the time-limit will include the 13 weeks that someone is on a lower rate of ESA of £65.45 for those over 25, £25.95 less than someone in the Work Related Activity Group, while they wait to be assigned to a group. This would result in a quarter of the time some people with cancer can receive critical financial support is at a significantly reduced rate. Macmillan recommends that should a time-limit be imposed it should start once an individual has been put in to the Work Related Activity Group and is receiving their full ESA entitlement.

4.2 Should a time-limit be imposed Macmillan recommends that the time-limit is not implemented retrospectively, that the time period re-starts at the point an individual leaves the Support Group and that the assessment period is not included in the time-limit.

5. The extension of the qualifying period for the Personal Independence Payment (PIP) will disproportionately affect people with cancer

5.1 It is proposed that PIP is for those with support needs associated with long term disability or illness, for one year as defined by the Equality Act. The time someone must be able to demonstrate they need this benefit before being eligible to apply – the qualifying period – will be doubled to six months compared to the current three months for Disability Living Allowance. PIP will remain a benefit to support people with the additional costs they face as a result of their disability of long term health condition.

5.2 Macmillan is very concerned by the proposal to extend the qualifying period for PIP. While we recognise the move for PIP to be for people with long term conditions we know that people with cancer, who have a long term condition as defined under the Equality Act, can experience a rapid escalation of additional costs associated with their disability very shortly following diagnosis.

5.3 Cancer treatment, and its debilitating effects, can start very quickly even before physical effects of the cancer are felt. Importantly, the first few months of treatment can be the period when extra costs are greatest, just as cancer patient, who will have often had to give up work, are trying to adjust their outgoings to their reduced income. For these reasons, Macmillan recommends that people with sudden onset needs are able to apply for PIP as soon as their support needs arise. We suggest they must still satisfy the eligibility criteria for PIP. They should be able to demonstrate they will need support for a prospective period of 12 months and therefore they do have a long term condition, and they will be subject to the new assessment for PIP. However they can apply for the benefit at the point of need.

5.4 People with cancer, and Macmillan benefit advisers, tell us that the existing three month qualifying period is already difficult for people with cancer. They may be out of work, and this combined with additional costs they face, can lead to debt and mortgage arrears.

5.5 People with cancer face considerable additional costs in the first six months:

i. Travel and parking for hospital appointments – low immunity often forces people to rely on taxis rather than use public transport. Macmillan research in 2006 found that cancer patients make an average of 53 trips to hospital during the course of their treatment and the average cost of travel and parking is £325. However in some exceptional cases it can be in excess of £10,000. [9]

ii. Extra fuel costs – increased need for heating, and increased use of the washing machine due to profuse sweating and hygiene requirements. Macmillan research shows that seven in ten (73%) patients undergoing active treatment use more fuel. [10]

iii. New clothes – many people experience dramatic weight loss or gain. One cancer patient said "some clothes hurt my chest if I wear them...I wear t-shirts or pullovers instead, even on the occasions I’m wearing a sari".

iv. Aids, adaptations, wigs, shoe inserts, special diets.

People with cancer have told us they need support with the extra costs they face, as soon as they face them:

"I used my Disability Living Allowance to pay for increased food and travel costs, and dietary supplements – about £50 per week. On top of that I was using extra heating – one quarter I had an electricity bill of £400! Treble my norm. This made me very stressed. I was mentally exhausted. I couldn’t pay the bills; debtors were harassing me on the phone and by post, threatening to repossess my house". Liz, diagnosed with breast cancer, Belfast

5.6 Many disabled people will experience additional costs from the time their condition arises. Extending the qualifying period will be problematic for almost all disabled people. However, the situation for people with sudden onset needs, such as cancer patients or people who have had a stroke or serious accident is particularly acute as their needs and additional costs can often be greatest during the first few months.

5.7 Macmillan recommends that people should be able to be assessed for, and access PIP as soon as their needs arise if they experience sudden onset physical and psychological limitations that are likely to be long-term The new assessment process, which must be designed to capture the needs of people with cancer, will ensure that only those eligible will receive PIP and periodic reviews will make sure that people receive PIP only for as long as they need it.

6. The Welfare Reform Bill fails to rectify existing inequities in cancer exemptions for ESA

6.1 Under the existing system cancer patients are treated differently when they claim ESA depending on what treatment they are receiving. Under the Employment and Support Allowance Regulations 2008 people with cancer who are receiving non-oral chemotherapy (e.g. via an intravenous drip) should not have to undergo a medical assessment in order to receive financial support. Instead they are placed directly in the ESA Support Group where they do not have to engage in ‘work related activities’, such as job interview practice, to receive their benefit. This was in recognition of the highly debilitating effects of such treatment.

6.2 People with cancer receiving oral chemotherapy or radiotherapy must still undergo a medical assessment to determine if they are eligible for ESA. They can still be placed in the ESA Work-Related Activity Group where they must take part in work related activities in order to receive their benefit. Macmillan benefits advisers regularly deal with cases where people receiving treatment for cancer are wrongly assessed, and either found capable for work related activity when they are experiencing very debilitating effects of treatment, or even being found fit for work. Macmillan’s Failed by the system report in November 2009 showed that assessors conducting the medical assessment were "horrified" that a cancer patient waiting for intensive radiotherapy after surgery was required to attend.

6.3 The existing system is unjust because:

i. The physical and psychological side effects can be equally debilitating whether the patient has non-oral or oral chemotherapy or radiotherapy. Side effects can include severe fatigue – consistently reported by patients as the most disruptive side effect – reduced immunity, vomiting and diarrhoea. Medical professionals agree that the existing system needs revision. Professor Jane Maher, Macmillan’s Chief Medical Officer has said "it is essential that the benefits system keeps up to date with the medical profession and doesn’t treat people differently because of the type of cancer treatment they receive" . Prof esso r Harrington, Independent Reviewer of the Work Capability Assessment, has said " t he current rules for automatic entitlement to ESA…may need to be changed to include cancer patients going through other forms of treatment such as oral chemotherapy and radiotherapy which can sometimes be equally as debilitating."

ii. Cancer treatment is changing with oral chemotherapies being prescribed more often and for more aggressive cancers . F igures from the USA show that in 2007 10% of cancer chemotherapy was prescribed in oral form but by 2013 this is expected to rise to 25%. [11] In short, the current system is not ‘future - proof’.

iii. In some circumstances cancer patients can be given the choice of taking the same chemotherapy drug either orally or non-orally. People with cancer tell us that they would routinely choose to take chemotherapy orally. Bengu Shail has received both non-oral and oral chemotherapies in her treatment for Acute Lymphoblastic Leukaemia. She said: "If given the choice I would always choose to take chemotherapy orally. I’ve had so many injections I wouldn’t choose to have more". Oral chemotherapies can be cheaper, less invasive and more convenient for patients as they can be taken at home and can give a patient a greater sense of autonomy. They also save the NHS money through reduced appointments.

6.4 Macmillan recommends that cancer patients are treated fairly when placed in an ESA group. Specifically, Macmillan believes that cancer patients awaiting, undergoing or recovering from oral chemotherapy or radiotherapy should be automatically assigned to the ESA Support Group in the same way that cancer patients awaiting, undergoing or recovering from non-oral chemotherapy are.

March 2011

[1] DWP Information Directorate: Work and Pensions Longitudinal Study. August 2010

[2] WCA Results ESA claims to Feb-10 – Neoplasm s, DWP Statistics, November 2010

[3] IBID

[4] Average time to employment for Jobcentre Plus Pathways customers, DWP ad hoc analysis January 2011 http://research.dwp.gov.uk/asd/asd1/adhoc_analysis/2011/jcp_pathways_average_time_to_employment_condition.pdf

[5] 5 Macmillan Cancer Support, Health and Well-being Survey 2008 , 2008.

[6] 6 Y o uGov online survey of 2,281 UK line managers. Fieldwork was undertaken between 26 July and 9 August. The survey was carried out online. The figures have been weighed and are regionally representative of all UK adults (aged18+)

[7] Time limit Contributory Employment and Support Allowance to one year for those in the Work-Related Activity Group – Impact Assessment , DWP, February 2011 http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

[8] IBID

[9] Cancer Costs: The Hidden Price of Treatment , Macmillan Cancer Support, July 2006

[10] Macmillan Cancer Support (2009) online survey of 974 people with cancer in the UK. Of these, 394 were undergoing active treatment.

[11] http://www.springerlink.com/content/8uj121031851p157/