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Free at the point of delivery? This article appeared in the Winter 2005 edition of our Bulletin.
Katie Austin, Campaigns Officer at Macmillan Cancer Relief reports on the hidden cost of hospital travel and parking for cancer patients.
Macmillan Cancer Relief’s recent report, Free at the point of delivery? reveals the hidden costs of traveling to, and parking at, hospital for cancer patients undergoing treatment.
At a time when cancer patients must deal with the stress of undergoing aggressive treatment for a potentially life-threatening disease, they also incur substantial financial costs.
A report by CancerBACUP found that nearly two out of five cancer patients of working age had experienced signifi cant fi nancial difficulties as a result of cancer. 1 A Macmillan Cancer Relief survey cited hospital travel and parking costs as being of signifi cant concern to patients. 2 These two hidden costs of cancer can hit patients particularly hard at a time when loss of earnings may already have reduced household income.
Following research with the CancerVOICES network and a pilot study of 10 hospitals in England, Macmillan carried out an audit of the 292 hospitals in the UK nations with cancer centres or units. Cancer nurse specialists or cancer information offi cers at 285 of the 292 hospitals in the UK with cancer centres or units were contacted and interviewed over the telephone by researchers about travel and parking issues for cancer patients.
The data from the audit was then analysed by Dr Foster Ltd. Macmillan also commissioned Opinion Leader Research to run three focus groups to obtain qualitative evidence of the problems faced by cancer patients in travelling to hospital and the costs they incurred in the process.
In Free at the point of delivery? this qualitative evidence is supplemented by case studies and individual stories from other people affected by cancer who Macmillan has worked with.
‘Patients are receiving treatment for longer, at a later stage in their illness and are living longer. For example many breast cancer patients now receive radiotherapy on a daily basis for 30 days. This didn’t happen even five years ago. Treatment delivery has changed and this impacts on the amount that patients have to travel to hospital.’
The travel costs of cancer patients are uniquely high due to the frequency of hospital visits, particularly for out-patient radiotherapy. This can involve daily roundtrips for up to six weeks at a time. On average, cancer patients who took part in the focus groups had made 60 visits to hospital throughout their treatment, 20 of which were for daily treatments of radiotherapy.
The NHS is saving £200 a day by delivering cancer treatment on an out-patient basis 3 but, in doing so, the cost has shifted to the patient in the form of travel expenses. The evidence in Free at the point of delivery? illustrates the extent of these costs. The average amount spent on travel by patients who took part in the focus groups was £380 but individual sums ranged from £25 to £848. Patients travelling from remote locations to specialist cancer centres may be spending far more on travel.
The NHS is meant to be free at the point of delivery but in effect the costs of travel and parking amount to hidden healthcare costs. Only patients on means-tested benefits or low incomes are entitled to reimbursement of their travel costs under the Hospital Travel Costs Scheme.
‘I didn’t think about the costs at the time when I was diagnosed. You’re thinking too much about what is wrong with you but once you start to feel a bit better you think “Oh, how am I going to cope with all this?”’ Hospital car parking charges have been growing steadily over the last few years. They may have been initially introduced at a notional level to ration limited car parking spaces but in recent years they have become an increasingly lucrative form of income generation for hospitals.
Macmillan’s hospital audit shows that parking charges have become a stealth tax which add significantly to the hidden costs of cancer. This is particularly so in England and Wales where 92% and 53% of hospitals respectively charge patients for parking. The variability of parking charges between hospitals, English regions and the UK nations is huge. While some hospitals provide free parking, others charge as much as £4 per hour. Charges for 24-hour stays ranged from 50p to £30 a day.
Hospitals are not legally obliged to provide concessions to cancer patients. The hospital audit showed that three out of five (59%) of UK hospitals that charge for parking do not provide discounts for cancer patients. Where discounts do exist they are often discretionary and not always well advertised.
‘We were able to get an ambulance...but it takes about five hours to get there and five hours to get back, it would have been alright to get there but no way could I have sat in it coming back because you feel so nauseous.’
There is free transport for everyone – non-emergency ambulances and ambulance cars for those with a medical need. However, nearly a third of health professionals interviewed felt that hospital transport was unsuitable for cancer patients, with whom it is exceedingly unpopular: the long waits for the transport to arrive, the long journeys, dropping off other patients along the way and the shortage of space so that no one can accompany you, means that a tiring day receiving treatment can become intolerable. Because hospital transport is so slow, uncomfortable and unreliable, patients opt to travel by car.
‘Sometimes you don’t make it to the bottom of the driveway before you throw up. I was ill. I was terrible, I was sick the whole way home, every single time. There’s no way I could have got on a train.’
Very few health professionals interviewed in the hospital audit thought that public transport was a suitable method of transport for cancer patients to get to and from hospital for treatment. Cancer patients undergoing treatment are either too ill or too exhausted to undertake lengthy journeys by public transport. People travelling to hospital for treatment therefore opt to get there and back by car. Many cancer patients are too sick or exhausted to drive and rely on partners or relatives to give up jobs or take time off work to drive them to and from hospital.
Increasingly, patients who travel to hospital by car may find they have to pay tolls and charges for using bridges, roads and tunnels. For patients travelling regularly for radiotherapy or chemotherapy, these charges can add significantly to the cost of travel. Patients travelling into the London congestion charge zone for regular treatment can now claim a reimbursement without having to satisfy a means test. However, cancer patients are not automatically exempt from tolls and charges elsewhere.
Other (non-cancer) patients simply miss their appointment. Indeed, it is estimated that 1.4 million people miss, turn down, or simply choose not to seek medical help because of transport problems. 4 However, missing an appointment is not an option for cancer patients, for whom receiving life-saving treatment can literally be a matter of life and death.
‘I’ve been having treatment eight years this July and I only found out about the Hospital Travel Costs Scheme last August.’
There is help towards the cost of travelling to hospital for patients on low incomes in the form of the Hospital Travel Costs Scheme (HTCS) and the NHS Low Income Scheme. In Scotland there is a separate non-means tested travelling expenses scheme for residents of the Highlands and Islands.
Government guidance recommends that information about the HTCS ‘should be displayed in all patient areas’ and provided ‘with appointment or admission letters’. 5 However, Macmillan’s hospital audit found that only19% of health professionals in the hospital audit reported that patients are informed of the scheme through posters, websites, letters, or at first appointment.
Methods of advertising the HTCS are haphazard and do not comply with government guidance. By omission, and by making it a complex process, hospitals are withholding access to the scheme for eligible patients – a practice which stands to save the NHS a lot of money.
In addition to a general lack of information about the HTCS, it can be an ordeal for patients to claim money back. Patients must find out where to go to claim reimbursements, this can often be a long walk from the cancer centre or unit and may not be open at convenient hours.
Macmillan believes that it is morally wrong that any cancer patient – regardless of income – who is undergoing regular treatment for a potentially life-threatening disease should be forced to pay for unavoidable travel costs.
Cancer patients should be treated as a special case because of their frequent, and often lengthy, journeys to hospital and the exceptionally high travel costs they incur as a result. The NHS is supposed to be free at the point of delivery but the reality for many cancer patients is very different.
Macmillan recommends that:
For a copy of "Free at the point of delivery?" visit the Macmillan Cancer Relief website.
1 CancerBACUP, (2005), Work and cancer: How cancer affects working lives
2 Macmillan Cancer Relief, (2003), Cost of Cancer survey of CancerVOICES
3 NHS Modernisation Agency, (2004), 10 High impact changes for service delivery and improvement
4 Ruston, D, (2002), Difficulty in accessing key services, Office for National Statistics
5 (updated May 2005), The hospital travel costs scheme guidance, Department of Health
