Memorandum submitted by Macmillan Cancer Support (FP 20)

 

Executive Summary

 

People with cancer who have undergone treatment in the last year are twice as likely to be in fuel poverty as the general (non vulnerable) population. This rises to one in five of those currently undergoing active treatment.

 

People with cancer should receive information tailored to their needs at key points in their cancer journey. This should include information about fuel poverty and the help available.

 

Macmillan believes that the Winter Fuel Payment should be extended to people with cancer in particular need. By particular need, we mean those who are terminally ill, those who have undergone treatment in the last year and those receiving council tax or housing benefit.

 

Macmillan also believes that the proposed mandatory price support scheme should provide assistance to people with cancer in particular need (as outlined above). We would also like this scheme to take the form of a social tariff rather than a rebate so that those receiving help can be guaranteed to receive the lowest prices offered by their energy supplier.

 

Background

 

1. Macmillan Cancer Support welcomes the opportunity to submit evidence to the Energy and Climate Change Select Committee inquiry into fuel poverty and would be happy to provide any further information if required.

2. Macmillan improves the lives of people affected by cancer, providing practical, medical, emotional and financial support. We work to raise awareness of cancer issues and have been campaigning for a better financial deal for cancer patients including ensuring patients receive routine financial information. Macmillan also operates a hardship grant providing financial assistance to those patients in need and funds benefit adviser posts in hospitals and information centres across the UK.

Progress against targets

3. Macmillan is disappointed that the Government will fail to meet the 2010 target to eradicate fuel poverty in vulnerable houses (including those with cancer). While we understand that fuel price increases have contributed greatly to the rising numbers of households who find themselves in fuel poverty, we believe this and the overall target to eradicate fuel poverty by 2016 should remain a key priority for the Government. Recent government activity (for example the pilot mandatory price support scheme) has targeted very specific groups who have a high incidence of fuel poverty. If this is likely to mirror the future of the Government's approach to tackling fuel poverty, we are concerned that those groups who are harder to identify or target will not receive the support needed. The Government should remain committed to identifying all groups in fuel poverty and elevating them out of fuel poverty.

4. Income is a large contributory factor in dictating whether someone is in fuel poverty. The Government has attempted to address this aspect of fuel poverty with the introduction of the Winter Fuel Payment. However, those in fuel poverty under the age of 60 do not receive this and the amount given in the payment has not risen in line with fuel prices. It is therefore important that the Government continues to look to other ways of maximising income, not least ensuring people claim the benefits to which they are entitled and addressing some of the challenges certain groups of individuals, such as cancer patients, face when trying to access key benefits (see paragraphs 21 and 22).

Defining fuel poverty

 

5. While the fuel poverty definition is useful in describing those who require help and targeting assistance, we are aware from our conversations with energy companies that they face difficulties pinpointing exactly who is in fuel poverty and therefore who qualifies for certain assistance because of a lack of comprehensive data collected by government and other agencies . Indeed, Macmillan has been conducting its own research to determine the number of people with cancer living in fuel poverty and has found this challenging. For example, at present the English House Condition Survey, used to estimate the number of people living in fuel poverty and determine profiles for those most likely to be affected, only gathers information on specific disabilities such as hearing, vision, learning, mobility, breathing and heart. While this captures common conditions such as heart disease, it misses other common disabilities such as cancer and diabetes. This means the Government is able to estimate the number of people with heart conditions or breathing difficulties who are living in fuel poverty but not those with cancer. We fail to see the logic of such an approach and feel it may lead to certain vulnerable people being favoured over other vulnerable people. We recommend that the Select Committee looks at whether sufficient data is collected by government departments and, in particular, whether more comprehensive data should be collected about vulnerable groups through the English House Condition Survey.

People with cancer and fuel poverty

6. Every year around 290,000 people in the UK are diagnosed with cancer and more than 150,000 die of the disease[1]. However, survival rates are improving - half of people diagnosed with cancer now survive for more than five years1 - and there are currently two million people living with or beyond cancer in the UK[2].

 

7. Research conducted by Macmillan[3] suggests that people with cancer who have undergone treatment in the last year are twice as likely to be in fuel poverty as the general (non vulnerable) population (19% compared with 9.6%). This rises to one in five (20%) of those currently undergoing active treatment. Our research also found that one in five (19%) people with cancer said that over the last winter they had to turn the heating off even though they needed it on and 91% said this was due to money worries (the additional 9% said this was due to reasons such as others being in the house or environmental concerns). An additional 31% still felt cold last winter even with the heating on. We therefore believe that the extent of fuel poverty among cancer patients is probably higher than our research (based on actual not modelled spend) so far suggests.

 

8. Several factors may force a person with cancer into fuel poverty. As a result of their condition, cancer patients face a number of increased costs at a time when their income has often decreased. Macmillan research found that among working age cancer patients (under 55s) seven out of ten suffer a reduced household income, losing on average 50%[4]. It is estimated that around 4 in 10 cancer patients of working age do not return to work after treatment[5]. Higher utility bills are one of the major additional costs which cancer patients face[6].

 

 


Julian, 43, London, diagnosed with intestinal cancer in 2008.

 

'I've had to stop work because of my cancer so I'm at home a lot and that means trying to keep warm.  Cancer treatment makes you feel the cold so badly.   I'm already behind with my heating bill and owe a couple of hundred pounds.  The fear of mounting debts is the last thing you need when you're so ill.'

 

 

9. There may be several reasons why a cancer patient faces increased energy costs. Many cancer patients spend longer periods of time at home in order to recuperate during treatment; are unable to engage in hypothermia prevention measures such as keeping active;[7] they may lose their hair; they may have to use other domestic appliances more often because they are unwell, and there is evidence to suggest that they feel the cold more[8]. The majority of cancer patients are also elderly (three out of four people diagnosed with cancer are aged over 60) and so are more likely to be suffering the effects of fuel poverty. Research by Macmillan has shown that 59% of people with cancer had used more fuel since their diagnosis. 75% attributed this increase to feeling the cold more since their diagnosis and 73% to spending more time at home since their diagnosis[9]. This means that cancer patients have increased energy needs throughout the year tied into their illness and treatment cycles. Our research also found that, of those who were struggling financially, two thirds were struggling to cope with energy bills since their cancer diagnosis.

 

10. Historically a significant number of the grants Macmillan has given to cancer patients facing financial hardship have been to help with the costs of heating. However, the number of patients applying for grants for this purpose is increasing. In 2009, over 41% of people receiving a grant from Macmillan received help towards their heating. 11,221 people were helped with fuel costs at a cost of 2,066,632. Although Macmillan can offer some assistance to patients in hardship, we are increasingly aware that we are unable to cover the full cost of someone's bill or help all those in need.

 

Targeting assistance

 

11. Both Government and energy suppliers have expressed a desire to better target resources to tackle fuel poverty. Indeed, part of the rationale behind the pilot data sharing and rebate scheme, is that the group targeted has a very high incidence of fuel poverty and will be guaranteed to receive this help. Macmillan agrees that assistance should be well targeted at those most in need and has attempted to identify those cancer patients at highest risk of fuel poverty. This includes those who are terminally ill, those who have had treatment in the last year and those on a low income and therefore receiving housing or council tax benefit. We estimate that this represents approximately 400,000 people.

 

12. If the data sharing pilot proves successful, we believe the Government and energy suppliers could identify terminally ill patients in a similar fashion. Terminally ill patients are entitled to the Disability Living Allowance under special rules if they obtain a DS1500 form from their clinician confirming their diagnosis. This would provide a vehicle for the DWP to identify such people who could be targeted for assistance.

 

 


Audrey, 45, Tyne & Wear, diagnosed with breast cancer in 2002.  She now has secondary cancers and is terminal.

 

'Our household income has halved since I got ill but our fuel costs have doubled.  I get benefits of just 70 a week but even our summer gas bill was 200.  We're struggling financially and cover ourselves in jumpers and blankets or just go to bed to avoid putting on the heating.'

 

 

13. However, it is unlikely that there is such an easy way to identify automatically other people in fuel poverty. For example, the data collected on patients who have received cancer treatment in the last year or who are receiving council tax or housing benefit is limited or does not exist. While NHS data may provide a possible vehicle as yet the IT network would not provide an easy way to access or collate this information. We would therefore suggest that data sharing has its limitations and that government schemes to tackle fuel poverty must allow people in need to apply for help. The Government could explore the role which the voluntary sector could play in acting as 'trusted partners' - identifying those in fuel poverty and either recommending them to government for support or administering fuel poverty benefits on the Government's behalf.

 

Information

 

14. One of the key ways in ensuring that those in need access the help available to them is to raise awareness of what is available. At present there are lots of different sources of help, with different qualifying criteria and available from a range of different sources. This can prove confusing for those attempting to access help. Macmillan also found that people with cancer were reluctant to approach their energy supplier for help as they felt sceptical about what would be offered.

 

15. Macmillan strongly advocates that people with cancer should be given information routinely at key points along their cancer journey including at the point of diagnosis and when initial treatment ends. This information should cover the patient's holistic needs which would incorporate the issue of fuel poverty and how to access help. The Government will be introducing information prescriptions for cancer patients shortly as a way of ensuring high quality and tailored information is consistently given to all patients. We would suggest that fuel poverty information is included in information prescriptions and that the Department of Energy and Climate Change work closely with the Department of Health to make sure this happens as effectively as possible.

 

16. We also believe that energy suppliers should be doing more to promote and raise awareness of the help available to vulnerable customers. Information should be accessible, readily available, placed on website homepages and included with fuel bills. This should include a clear statement of who is eligible for help. We also suggest that call centre staff ask prompting questions so that people with cancer recognise that choosing to reveal their cancer diagnosis may allow them to access additional help. This needs to be done in a sensitive manner. Energy companies should look to work with voluntary partners, such as Macmillan, who have the expertise to advise on how to reach vulnerable customers and how best to communicate with them around potentially sensitive issues.

 

The effect of the cold on people with cancer

 

17. The unaffordable nature of fuel for some people with cancer is not only having a financial impact but is also impacting their health and wellbeing. Macmillan has been investigating the effect of living in a cold home on the health and wellbeing of people with cancer. In online focus groups with people with cancer living in fuel poverty, they highlighted depression, feeling less motivated, increased pain associated with treatment and a higher incident of trips or accidents as a result of feeling cold. From Macmillan's own literature searches we have not found any published literature or research in this area.

 

18. Macmillan therefore undertook a survey of health and social care professionals to explore this issue further. Professionals believed there was a link between feeling cold and mental wellbeing and that feeling cold can strongly affect a cancer patient's recovery. Three quarters (77%) of professionals have seen evidence of patients suffering from pain, for example neuropathic pain, triggered or worsened by feeling cold. Some also noted that other types of pain are made worse by the cold, notably arthritic pain and skeletal pain. Professionals also highlighted the emotional impact of feeling cold and the impact it could have on a patient's motivation to 'get better'.


 

 


Fiona, 47, London, diagnosed with breast cancer in 2009 and currently undergoing radiotherapy.

 

'I had to give up work almost immediately after I was told I had cancer as I worked with drug addicts and couldn't risk getting infections.  I'm so worried about my fuel bills that I've been putting on layers of clothing rather than switch on the heating.  It's not right being ill and cold in my own home, and I worry because I don't want my son to suffer, too.'

 

 

19. We believe that health and social care professionals are in a useful position to both identify those at risk of fuel poverty and to signpost people to appropriate information and support. The Department of Energy and Climate Change should work more closely with the Department of Health to ensure professionals are aware of the signs of fuel poverty, who is most at risk and where to signpost patients.

 

Support from Government

 

Winter fuel payment

 

20. Macmillan believes the Winter Fuel Payment should be extended to cancer patients in particular need (see paragraph 11). One quarter of all new cases of cancer occur in patients aged under 60 [10]. These patients do not, therefore, qualify for the Winter Fuel Payment. The payment provides immediate relief to households in financial need who may otherwise face the choice of effectively self disconnecting or cutting back on other daily necessities. While energy efficiency schemes may reduce energy use and bills long-term, the saving may not be large enough or come quickly enough to help those in need now. We are also aware that due to increased prices the Winter Fuel Payment is no longer large enough - particularly for those using oil or solid fuel heating. Many patients aged over 60 are applying to Macmillan for help with fuel bills despite being in receipt of the Winter Fuel Payment.

 

Cold Weather Payment

 

21. Macmillan has recently become aware that people with cancer are struggling to qualify for Employment and Support Allowance as the work capability assessment is not sensitive to the problems faced by these people[11]. Others who should automatically qualify for the benefit (ie those undergoing radiotherapy), should automatically qualify for the support group (ie those undergoing non-oral chemotherapy) or should be fast-tracked on to the main phase (ie those who are terminally ill) are also experiencing problems with these rules not being consistently applied. Some people may simply never find out that they are entitled to this money. The National Audit Office found that, despite the financial difficulty facing people with cancer, 77% of cancer patients are not given any financial support information at any point in their cancer journey.[12] This means many are left unaware of the support to which they may be entitled or how they can access help. This has a knock on effect as this benefit allows the recipient entitlement to Cold Weather Payments.

 

22. People living with cancer also experience difficulties claiming Disability Living Allowance (DLA) and Attendance Allowance (AA) as well as other benefits. For example, a Macmillan study in 2004 found that in the UK 54% of people (nearly 83,000) with a terminal cancer diagnosis did not claim disability benefits to which they were automatically entitled[13]. Many have practical difficulties filling out the complex forms and there is fear of the stigma about claiming benefits. This prevents people from claiming financial assistance under energy efficiency schemes such as Warm Front.

 

Energy Efficiency Schemes

 

23. We welcome the Government's recent changes to the Warm Front Grant which means that those qualifying for help can now receive more towards the cost of the work needed. We also hope that greater competition will provide better value for money. However, we are concerned that not all cancer patients in need are able to benefit from the Warm Front Scheme. As outlined above, those with a disability or long-term illness qualify for the scheme if they receive Disability Living Allowance or an income-related benefit with the disability premium. Many cancer patients struggle to access these benefits.

 

24. Another issue is the time limited nature of the grant. This is creating particular problems for some cancer patients who have been unable to proceed before the expiry date because of the onset of illness. These people have decided they cannot face going through the full application process again and as a consequence have decided not to proceed with the work. Similarly we were also contacted by a person with cancer who was unable to proceed with insulation to her roof because the company would not conduct the work until the loft had been cleared. The person with cancer was too ill to do this work herself and could not afford to pay somebody else. We suspect that this is a problem which is likely to occur often. We recommend that the Government looks to address the issues preventing vulnerable people from accessing the Warm Front Grant.

 

Support from energy companies

 

25. Macmillan welcomes the introduction of mandatory support for fuel-poor energy customers. We think it is vital that particularly vulnerable cancer patients are protected through such schemes and hopes that a standardised approach across the industry might reduce confusion. At present social tariffs differ between suppliers on the discount they offer and their eligibility criteria. In some cases it may be cheaper for a customer to switch supplier rather than use their current supplier's social tariff. This is confusing for customers as well as those advising them such as welfare officers. Macmillan research has found that 93% of people with cancer in fuel poverty are not on a social tariff.

 

26. While the Government has indicated that it sees older people as the main focus for mandatory price support schemes, we consider it important that the Bill includes the provision of help for low income families, disabled people and people with cancer in particular need (see paragraph 11). The Bill should also ensure that price support takes the form of a social tariff. These provide a guarantee to eligible consumers that they will receive the lowest tariff on offer. On the other hand a fixed sum rebate means a fuel poor customer may still be paying more for their fuel than a non-fuel poor customer on a cheaper tariff.

 

27. In addition, we hope the Government will continue to require energy companies to provide financial support for discretionary social programmes. Cancer is classed as a disability under the Disability Discrimination Act (DDA) and as such cancer patients fall into the vulnerable customer category and should therefore be included in this support. In focus groups held with people with cancer, Macmillan found that there was little awareness of the help available from energy companies and people with cancer were reluctant to approach their supplier for help because of a sense of scepticism. Therefore, companies may well need additional guidance and support to ensure the most vulnerable are targeted through such programmes.

 

February 2010



[1] CancerStats, Cancer Research UK

[2] King's College London, Macmillan Cancer Support and National Cancer Intelligence Network, Cancer Prevalence in the UK, 2008

[3] Macmillan Cancer Support online survey of people with cancer, May 2009

[4] Macmillan Cancer Support, Cancer Costs, June 2006

[5] Spelten E, Sprangers M, Verbeek J, Factors reported to influence the return to work of cancer survivors: a literature review, Psycho-Oncology 11: 124-131 (2002)

[6] Macmillan Cancer Support, Cancer Costs, June 2006

[7] Rising fuel bills could mean more die of cancer, The Press and Journal, 14 October 2008

[8] Shivering in acutely ill vulnerable populations, Holtzclaw, AACN Clinical Issues, Volume 15, No. 2, pp267-279

[8] http://www.npower.com/health_through_warmth/about_htw/Health_impacts/index.htm

[9] Macmillan Cancer Support online survey of people with cancer, May 2009

[10] CancerStats, Cancer Research UK

 

[11] Macmillan Cancer Support, Failed by the System: Why the Employment and Support Allowance isn't working for people living with cancer, November 2009

[12] Tackling Cancer: Improving the Patient Journey, National Audit Office, February 2005

[13] Macmillan Cancer Support, The Unclaimed Millions, June 2004