CANCER IN THE COMMUNITY
for icon magazine by Madeleine Kingsley
Originally published icon Issue 1 2007
They say that money talks. In the face of cancer, most people find that it walks, fast and far away. It is more than enough for anyone to confront a cancer diagnosis with all that attendant anxieties, the treatment and the uncertain future. Add financial hardship to medical emergency and you multiply the misery beyond calculation. Or possibly not: recent research from Macmillan Cancer Support sums up the horror: up to 45,000 cancer sufferers each year struggle to keep a roof over their heads, while 15,000 lose their houses. The entrepreneurial self-employed are most at risk of repossession. “When you have cancer, you expect to lose your hair and weight, but you do not expect to lose your home,” says Melanie Ward of Lincolnshire, who has aggressive lung cancer. “I have written to Tony Blair and David Cameron with no reply.”
She is in good, articulate company, for more and more of those facing financial deprivation through cancer do not, as icon discovered, suffer in exhausted silence “I had breast cancer followed by a recurrence so I couldn’t work” says Julie from Surrey. “I applied for Disability Living Allowance but I was told that I could only claim the higher rate if I signed a form to say my condition was terminal. I refused. Nobody should have to put his or her name to such a psychologically damaging statement. At such a vulnerable time, you need your optimism as well as hard cash.”
Rick Costello, Nottingham father of three and a former businessman of 51, suffers from incurable cancer of the pancreas. His wife has quit her job to care for him full-time. Loss of income, compounding his dread diagnosis is, he says “devastating”. He and his wife manage on benefits below £125 a week: “The forms you have to fill in make even dying hard in this world”. Palliative chemotherapy leaves Rick feeling excessively cold, so he needs his central heating. It’s a sign of his battling spirit that he has taken to The House of Commons his campaign for victims of cancer to receive winter fuel alongside all the over-60s, who receive their £200 rich and poor, alike. “It seems ludicrous” says Rick “that the likes of Cliff Richard with their villas abroad are automatically entitled to the £200 winter fuel allowance but people who really need it like me cannot get it.” What seems really ludicrous is that someone as sick as Rick Costello has to mount a crusade for what you would judge an obvious compassionate concession. Macmillan, mercifully, have rumbled how tough it can be for cancer patients fighting their way through the benefits maze. They now have some 60 benefit advisors to signpost the way to claims and entitlements.
Everyone with cancer has extra costs to meet– anything from hospital parking (up to £20 a day), extra childcare costs, extra bedding and pyjamas, ‘treat’ foods to sustain them during chemotherapy, added power and lighting bills while they rest and recuperate at home. The average cancer patient spends £325 on 53 trips to hospital during the course of treatment. Only four per cent receive help towards the cost through existing schemes like the Hospital Travel Costs Scheme (HTCS) and fewer than a third even know such helps exists. These costs, of course, are just the small-sum daubs on an overall cancer portrait of plummeting lifestyles and unacceptable hardship. Coventry mother of five Deborah Soesan contracted bowel cancer four year ago. She had to give up her job – and her husband subsequently lost his. Two mortgage breaks and a shift from endowment to interest only have not solved their financial headache and the prospect of long-term debt is an ongoing worry: “When you’ve been diagnosed with cancer” says Deborah, “Your main thing is to survive. Then, as you start to recover, you encounter all these money problems. You feel like you’re being punished. It’s harder than all the other stuff you have to go through.”
Lynn Burbidge, 48, agrees. Her second husband, Lee, 37, has for 14 years, suffered a very rare and deeply debilitating form of cancer – musculopeoan neurotic fibromatosis. Lee has faced, along the way, two major surgeries, six weeks radiotherapy, eight months chemo and a small operation to remove a metal plate replacing his collarbone. His cancer, affecting his chest and shoulder penetrates the nervous system. If it advances he faces gangrene - or amputation of an arm. Chemo has left him very depressed. He cannot work. Together Lynn and Lee have lost a house and two businesses. “We are very fortunate” says Lynn that we have a very strong marriage or we would surely have split up. I have certainly met couples along this cancer journey that have parted – and it’s not because of the illness. You can cope with that. What you can’t handle is the illness plus the worry of whether you can afford to buy potatoes.”
It would be churlish to claim that the government has done nothing to relieve the cancer-stricken – paying up for Herceptin to the tune of £30,000 per annum per breast cancer patient seems the lifesaving crock at the end of the rainbow for those women to benefit. The new Disability Discrimination Act now extends protection to cancer patients, who should therefore be protected and helped with the necessary adjustments to do their jobs. Employees should be allowed, for instance time off for medical appointments, extra breaks to cope with fatigue, to work from home and to phase their return to work according to speed of recovery. A great boon – in theory, but the sceptics among us, know very well that where there is a will to shed staff in fragile health, a way will be found, as it has been with pregnant women and promotion, long years after the introduction of statutory sexual equality.
Families touched by cancer don’t need lip service in law. What they really and badly need is reassurance that they won’t, after years of honourable hard graft and decent living, be impoverished, never mind rendered homeless, purely for contracting a dread disease. Money worries do nothing for the peace of mind that is at such a premium, but so much needed, by those in treatment. Forget the old saw that you have nothing without your health. Money, in the form of recuperative sunshine, or simply someone else to do some housework for you, can sweeten sickness and restore the spirits. Listen to any financial advisor, and there is no excuse not to have what you need. Advice from the moneymen reads like one long advertisement for insurance – against the day that any grave conditions strikes, each and every one of us should have our Mortgage Protection and Critical Illness cover in place. Yorkshire Building Society observes that only a quarter of borrowers do have mortgage protection, which costs between £2.60 and £5.19 per £100 of cover. But even this is not the ultimate solution: No building society told me – until Lynn and Lee Burbidge’s experience prompted me to ask – that Mortgage Protection only lasts for a year. After that, still sick or not, it’s your responsibility to meet your own repayments once again.
All the big building societies stress the importance of letting them know as soon as you are diagnosed, if you anticipate any potential problem in keeping up your payments. Right, sure, of course you will….isn’t your lending provider just going to be the absolute priority when you and your loved ones are in total, tearful shock and barely able to hold yourselves together? There are options, one is assured, for the sick and cash-strapped, and it may be possible to take a short mortgage ‘holiday’, to make reduced payments or change from a repayment to an interest-only scheme. No general guideline exists because “No two situations are the same, and we deal with customers on a strictly case by case basis.” Chillingly, however, several building societies reported, almost with pride, that you would, if you had cancer, be treated exactly the same as someone who had lost their job and needed temporary respite. Where is the added understanding and compassion in that? And where the commonsense comparison? However uncomfortable it may be to find yourself suddenly and unexpectedly out of work, it is generally possible to find some way, albeit filling shelves, somehow to earn a crust. Cancer patients, sadly, have no choice.
Ged and Manda’s wedding
It is just possible, however, that you may uncover more help at hand, than you ever imagined. Tanya Jackson of the Yorkshire Building Society tells the wondrous true story of a woman who recovered from cancer and, returning to work, sought a further advance to cover the debts she and her partner had necessarily incurred during her treatment. A diligent branch mortgage advisor checked out the situation and came back with the bonanza news that the “lucky” woman held, in fact, a forgotten life and critical illness cover. The insurance company were contacted on her behalf and coughed up enough not only to cover all debts, but the entire mortgage, with a little left over for good measure.
This is beyond a dream scenario for someone like Melanie Ward, 49, who used to run her own internet and computer repair company. Before cancer she and her courier husband. Ron, had a “lovely lifestyle”, running a Mercedes and holidaying in Sharm el Sheikh or Venice. They were only part way through renovating a three bedroom bungalow, not refurbished since the 70s, when Melanie was diagnosed. The unfinished bathroom still lacks a wall – and with it essential basic privacy. Currently in “terrible pain”, often breathless and suffering such a sore mouth from chemo that she can scarcely eat, Melanie says that she has no idea when she might go back to work, “If I’ll see my 50th birthday in October or, indeed, still be alive next week.” But the overriding worry she wakes up to every morning is of mounting mortgage arrears: “our monthly payments are £1600 to which the government contributes just £500. I don’t know where we’re supposed to get the money, though my son, who has taken over my business, helps when he can. I’m told that government expects lenders to do what they can, but our small mortgage company wouldn’t even talk to me. My Macmillan welfare officer, Davina, then wrote on my behalf, reminding that under the Finance Act of 2004, they are meant to have procedures in place for the long-term ill (for instance. tacking the arrears on the end of the mortgage term). That was two weeks ago and we’ve still heard nothing. It’s very worrying as we couldn’t even sell the house in the state it’s in. What is the sense of being able to have a free car on Motability, but nowhere to live? My husband puts the worries to the back of his mind, and won’t talk about them, because he doesn’t like to see me cry. My mother says she doesn’t know how I cope. You just have to march on.”
“It’s like robbing Peter to pay Paul, trying to keep debt collectors from the door” says Amanda Murphy, 33. Her husband Gerard, 37, has acute myeloid leukaemia and when first diagnosed, two years ago, was given 48 hours to live. Between them the couple have six children, but the most affected (during his two years of roller coaster sickness, his five regimes of chemo and bone marrow transplant) have been Amanda’s nine-year old-daughter, and son, aged eight. Prior to his illness Gerard was a well-built, fit man fond of his golf and football. He worked as a multi-drop driver, delivering treadmills to sports shops up and down the country. Now he cannot work and neither can Amanda, who, ironically, works for the Department of Work and Pensions, and is, technically on a career break while she looks after her man. “I feel awful for people with no experience in benefits” she says “It’s a minefield.”
Prior to cancer the Murphys were “not well off, but comfortable. We saved for what we wanted and we could go out for a meal if we chose. We ran two cars” says Amanda “but mine couldn’t take the hospital commute and died on me. We sold the other to raise cash. We don’t pay for the Mobility car we now run, but to get it you have to surrender your rate of disability allowance. If you return to work you have to give the car back ….but how then do you get to work? It’s Catch 22”
Knowing something of the system, Amanda approached the Consumer Credit Council http://www.cccs.co.uk who, she found very helpful. “They couldn’t put me on a recognised debt plan because we didn’t have enough money coming in. They told me to pay £1 to everyone and keep paying, because any court would then recognise that we were at least offering something. But some creditors are not very happy and the £500 we owed on Barclaycard has risen through charges to £1400. The mortgage company have been a nightmare, even though I rang them as soon as I realised Gerard’s illness was more than a nasty infection. To begin with we made full repayments, but all our savings went on money, travelling and food. Through income support you can get interest paid on your mortgage, but the regulations have changed over the years and your situation depends on exactly when you took your mortgage out. In our case, we had to be on income support for 39 weeks before they would help, and that’s how the mortgage company came to threaten repossession. They refused to believe how ill Gerard was until finally the consultant wrote confirming that he was extremely ill. Even this didn’t stop them taking proceedings. I wrote every month assuring them that after 39 weeks the interest would be paid, but they wouldn’t believe me. They just wouldn’t listen.”
Financial pressure, says Amanda, added full 90 per cent to existing stress, as Gerard’s life hung in the balance: “I can’t describe what it’s like to be telephoned in the hospital and asked why you can’t make any payments on the very day you are told that the next 24 hours are critical for the man you love. It’s hard for me to use the phone because I have a hereditary hearing disorder and wear two aids. But I kept battling. I hid the mortgage problem from Gerard for more than six months because he was so very ill. I would be his rock when I was with him. But away from him I was falling apart, because I couldn’t keep our house up and running. Finally I just broke down and told him, but at that point the interest began to be paid, and they stopped proceedings.”
Amanda knows very well that money wouldn’t have healed Gerard “But it would have made all our lives much better. I don’t think I would have been that near collapse had I not been begging people and crying all night , wondering how we were going to survive. I admit I have spent money unwisely, buying Gerard things to cheer him up and nice foods to eat. His weight plummeted from 15 to nine stone, so he needed a complete new wardrobe, down to the underwear. I sold all my jewellery and the play station to keep going – I then had to think what else I could sell to buy the kids even small birthday presents.”
The Murphy’s standard of living is altogether changed: “The youngest childrens’ clothes are hand-me-downs and any day out has to be free – a museum trip or just splashing though puddles on a walk. We had to get rid of the dog. I can’t even give the children pocket money in return for little jobs. They have been fantastic. I would say that cancer took everything else off us and if we’d also lost the house, then we’d have lost absolutely everything. The prospect was terrifying, though when I look back now to the way Gerard was, and to every day when I could have lost him, I have to say that I now don’t care as long he’s breathing…as long as we’ve got each other.”
TLC is what every cancer-stricken family needs – in spades – and financial TLC should be part of that package. For the Murphys consolation lay in the kindness shown them by people who understood their needs – not least her sister and other relatives who ensured she and the children had food in the fridge. Last March Gerard was well enough for he and Amanda finally to arrange a small wedding. “which even six months before would have been too much for him.” The Willows Foundation, which arranges special days out for seriously ill young adults of 16-45, heard their story from Gerard’s social worker and sent the newlyweds to Gleneagles for the weekend. Gerard even persuaded the hospital to take his Hickman line out, so that he could take a better swing during a treat round of golf. “For two days everything was just as normal” Amanda beams “As honeymoons go, it was just what was needed.” As was the news, just as icon went to press that Gerard had been to see the job broker, Shaw Trust and been offered the chance to retrain in all three fields he fancied – in fork lift and HG driving and also IT training.
Left - Manda’s son
“Whoever says life is fair is lying” says Lynn Burbidge, wife of Lee. Over his cancer years the couple have lost their house and two businesses. They have constantly, but thanklessly sought to help themselves: “We keep trying, as we are not stay-at-home people content to sit on our backsides. But every time we get our lives back on track, the cancer returns and we are back to square one.” Lynn – who is 48 to Lee’s 37 had already lost her first husband to long-fought cancer when her boys were just six and 10. Lee’s illness began when he was only 23. “My first thought then was ‘I can’t do this again. I just can’t’. But you do.” During Lee’s first bout of treatment, back in l994, the couple saw their hairdressing supplies business go down, because Lee lost the use the of his arm and needed daily physio. In l997 he was just recovering, but in l998, the couple’s mortgage company threatened them with eviction from their three bedroomed end of terrace house in Billingham, Cleveland. “I think repayments were only £150 a month, but we couldn’t manage this. We were paying what we could, when we could, because out mortgage protection cover had run out. If we’d read the small print we’d have realised that it only lasts a year and not, as we assumed, for the whole period of illness. So we were scraping by. If the kids needed new shoes they had to wait until we could save for them. We tried shifting the mortgage from repayment to interest only, but weren’t allowed. In the end we sold the house rather than have it repossessed with the black mark that would leave against our names. But then the council wouldn’t help because they said we had made ourselves homeless. The whole system is crazy.”
Lynn’s boys had to live with her mother while she and Lee went south to train as pub managers. They were back up and running - until 2001 when Lee’s tumour started to grow again. Two years later, they started another, light haulage, business. “We had to… Lee is not exactly employable. He’s considered a bad risk. My mum had to buy our van because we couldn’t get credit” They loved the new business, but lost it too, when in January 2005 Lee started nine months of chemo. Now in rented accommodation that costs £100 a week (the council will only pay a proportion; the rest the Burbidges meet from benefits) Lynn admits that financial troubles have put great strain even on their good marriage. “At one point we considered splitting up, simply because we would then get more money in benefits and Gerard would be able to afford better food and more heating. I’m lucky to have a washing machine at all, but if mine breaks down I can’t buy a new one on credit and I can’t save for one either. When the fridge freezer ground to a halt, there was no way we could replace it. Our Macmillan social worker arranged us a grant.”
.
The Burbidge’s quality of life has plummeted since their marriage: “Then we had a three month holiday in America. Now we struggle to buy groceries. Sometimes we don’t buy washing powder, and the only way we could go to the cinema would by not paying some other bill. At one point I collapsed, crying, in hospital because I did not have the £3 to buy Lee a pair of trousers. In the end Macmillan found the money, just as they paid for us to have a proper holiday in Corfu. I can not praise them enough.”
It is humbling that, after all Lynn has been through, she dreams only of owing nothing and fears above all the mortification of being taken to court. Lynn and Lee’s debts are modest: £6-£7000 would clear the lot. “To a lot of people that would be nothing, but it’s the world to us and it worries us like you would not believe,” sighs Lynn. “It’s soul destroying.” Most of the time, in fact, Lynn remains surprisingly upbeat, “but when threatening letters arrive, I do think that no matter what I do or try we are never going to see light at the end of the tunnel. Why us? Well, things happen in life. I know that. If I sat and asked ‘Why?’ I would spend my whole life crying.”
She has, admirably and more productively, been helping to set up a Macmillan Patient Carer Group “ so that other people in our situation have support.” She dreams of a Cancer Patients’ Charter that would begin by ensuring “that no one with cancer is financially punished for it.” To feel so is inevitably, says Lynn, embittering. “It’s as if we have been relegated to a dark zone bereft of common sense and compassion. Surely society should see that we are people, not statistics.”
Macmillan Helpline 0800 500 800