Written evidence from Macmillan Cancer Support (BFD0193)

1.               Introduction

Macmillan Cancer Support welcomes the opportunity to respond to the Work and Pensions Select Committee’s inquiry into benefit delivery. Our evidence draws upon research we have undertaken in this area as well as our expertise in providing benefits and financial support to people affected by cancer through our network of professionals. Last year, Macmillan supported over 123,000 people with benefits advice through the Macmillan Support Line and our face-to-face benefits advisors. 

2.               The financial impact of cancer

There are over 2.5 million people living with and beyond a cancer diagnosis in the UK.  In addition to the physical and emotional effects most commonly associated with cancer, it also brings with it a substantial risk of falling into financial hardship. Four in five people with cancer are affected financially and are, on average, £570 a month worse off as a result of their diagnosis, with 30% losing an income on average of £860 per month[1].  Many face additional costs as a result of their cancer which can include:

• Higher heating costs, as people with or recovering from cancer, may spend more time at home and feel the cold more because of their cancer. Worryingly, over a quarter (28%) of people with cancer said they couldn’t keep their home adequately warm in the winter because of the cost.
• Higher travel costs, for example in travelling to and from hospital appointments. In addition, many people recovering from cancer will continue to experience symptoms like pain and fatigue and need to pay for transport for distances that those without an illness or disability could manage.
• Additional food costs – as many people are required to change their diets and have higher food bills as a result of the effects of cancer and its treatment.
• Higher telephone or internet bills – people may suffer from fatigue and feel weak following treatment and therefore may be unable to go out as much to see people or access services, requiring them to do so online or by phone.

Welfare payments are therefore a vital safety net for thousands of people affected by cancer – helping them to cope with the dual impact of a loss of income and increased costs at a time when they should be focusing on their treatment and recovery. It is essential that people living with cancer and their family and carers know they will be provided with the financial support they need, when they need it.

3.               The importance of timely payments of benefits to people affected by cancer

Given this significant financial impact of cancer, it is vital that people with cancer receive support from the benefits system in a timely manner. Doing so helps people to cope financially and ensures they can meet the extra costs that can accompany cancer.

Cancer, in particular, can result in a sudden onset of daily living or mobility needs, meaning it is imperative that people receive assistance swiftly so that they can put in place the support they need.

In addition, many people, on receipt of certain benefits such as Personal Independence Payment (PIP), will become eligible for other means tested and ‘passported benefits’, which could provide much needed help, such as Carers Allowance, NHS travel, free prescriptions and the warm home discount schemes. Timely payment of the original benefit therefore ensures subsequent timely access to this additional support.

Following identification of the delays in claiming PIP in 2014, Macmillan conducted research to understand what impact delays to benefits payments can have on people living with cancer. Although this evidence referred specifically to waiting times for PIP, similar impacts are also experienced by those who face delays in receiving other benefits.

The research[2] found that delays to benefit payments can:

• Have a significant impact on claimants’ health and wellbeing. For example, more than half of respondents (56%) said delays had caused them increased financial worries, while 51% felt the process of waiting for PIP payments had caused emotional strain.
• Make it harder for people to cover essential costs, like heating.  40% of people said that, because of delays to PIP payments, there were unable to adequately heat their homes. This is of particular concern for people living with cancer as they tend to feel the cold more as a result of treatment and an inability to properly heat their home could therefore impact on their recovery.
• Make it harder for people to cover support costs -a third (33%) said they had been left unable to pay for support when they felt they most needed it.

4.               Personal Independence Payment (PIP)

PIP provides financial assistance to help people with some of the extra costs that arise from a long term ill-health condition or disability. 

Progress on reducing waiting times

Macmillan welcomes the action taken by the Department for Work and Pensions to reduce PIP processing times, which latest statistics show are now within an average of 11 weeks – a timescale Macmillan had been calling for. We were delighted to see the Government’s commitment to learning from the experience of rolling out PIP, and ensuring delays on this scale are never seen again. Macmillan will continue to monitor the waiting times data to ensure they remain within 11 weeks.

28 day regulations – terminal illness

Macmillan welcomed the progress the previous Government made in reducing delays in PIP payments for those with a terminal illness, who apply under special rules. However, we retain concerns about the impact of certain regulations on people affected by cancer, particularly those who are terminally ill.

When an individual claiming Disability Living Allowance (DLA) experiences a change in circumstances, this is effectively treated as a new claim for PIP, with its new criteria. DLA will continue until a decision on PIP has been made and then a further 28 days after the last DLA pay day. This means that a person who is refused under the narrower PIP criteria will have a run on to allow them to budget before their money stops.

However, the rules are designed so that they also apply to those who see an increase in their entitlement and means these individuals will not receive the increased amount for at least a further 28 days.

This can be a particular problem for people with cancer whose condition deteriorates, and who then become entitled to a higher rate of PIP under special rules claims (for those with terminal illnesses). Where claimants move from DLA to PIP, the increase in entitlement will not be experienced until at least a further 28 days, meaning many people with terminal illnesses are missing out on money which could help them to meet their care and support needs.

Macmillan would therefore like to see the Department for Work and Pensions amend regulations for people claiming DLA whose circumstances change, such as those who receive a terminal diagnosis and are now eligible for a special rules claim. Regulations should be amended so that these people claiming PIP are not disadvantaged by the 28 day protection rule and receive increased support immediately.

5.               Joined up working

Given the complex nature of the benefits system and the varied and multiple needs of those it supports, it is essential that different elements join up wherever possible to improve the experience for the individual claimant and ensure payments are made in a timely manner.

The Department should continue to explore opportunities to improve the coordination and communication between different benefit departments and types (such as means tested and contributory benefits) to ensure claimants receive the correct entitlements, at the appropriate time, and to support swifter verification of evidence of eligibility.

We look forward to continuing to discuss this with the Department for Work and Pensions to ensure the benefits system meets the needs of people with cancer and their carers.

September 2015