'If your experiment needs a statistician, you need a better experiment.' –
In 1998 a Gallovidian octogenarian teacher described to her GP an eight-hour journey to obtain palliative treatment for cancer. Her request was typically selfless: 'please stop this happening to anyone else.' Glasgow is a two-hour drive from Stranraer, Edinburgh over three. Her referral to Edinburgh involved 50% additional and thus unnecessary travel time. The Rhins of Galloway is west of Oban, Fort William and Glasgow, yet in 1998 west Galloway was dragged into the south-east cancer network (SCAN), creating firm and inflexible ties to Edinburgh. Bizarrely, the board dismissed concerns as an isolated complaint.
A study in 2001-03 revealed that this was far from unique. An unselected sample of 79 Wigtownshire cancer patients were asked about travel. Thirty journeys, 3.4% of the total, lasted over eight hours. On average, over the study period a patient travelled 1,396 miles (35 hours) to access treatment. One travelled 5,210 miles, or 152 hours. The longest journey was 14 hours. 22% of patients died during the study and others shortly after.
Another way of looking at it is that an average outpatient appointment required 124 miles or three hours 20 minutes travel. Referring to Glasgow would have reduced travel by 10.7%. The board again questioned the validity of the data on spurious grounds, that it was an observational study of a selected group. As one academic said, these people would refuse to believe in gravity because Newton was only hit by one apple.
It has long been recognised that rural cancer patients have a higher mortality rate than urban patients. This had been attributed to late presentation, blaming the patient, and late referral, blaming the GP. Hiding behind this prejudice, the board and politicians sustained the view that travel had no bearing on outcomes. Why common sense, care and compassion at these accounts failed to elicit change is for others to judge.
A further study in a reputable journal in 2008 showed that Scottish mainland patients who travelled more than three hours were admitted to a cancer specialty bed less than half as often and had shorter inpatient stays than those travelling less than an hour. This demonstrated a likely relationship between increased deaths and a lower admission rate. Most of those enduring travel more than three hours from a cancer centre were not attending their nearest specialist; the major contributor to this appalling statistic was west Galloway. The board took the view that the pathway was working well, and that all central government targets were being attained. No review was performed.
A government senior medical officer appeared to criticise this study on the basis that it was not a randomised controlled study. Such criticism was irrational. What sane patient would have agreed to volunteer for such a trial to endure an extra three hours (minimum) travel to routine outpatient appointments when the care was otherwise identical? This flawed thinking was consistently applied. The senior medical officer (SMO) stated: 'Patients from out-with the cancer centre boards are always admitted and discharged more quickly than local patients, often at the behest of the patient and family for social reasons... Staying less time in a specialist centre is hardly surprising for social and medical reasons.'
If the same results can be obtained with half the admission rate, surely there should be less admissions for all? If lower admission rates are not reducing survival, why admit urban patients for no benefit? Unfortunately, a statistical association does not prove cause and effect; from a purely academic perspective, he could still argue a 'not proven' case.
A meeting with the secretary of state for health and wellbeing at Holyrood in 2015, at which the SMO was present, established the government policy that west Galloway being in the east network was an 'operational matter' for the board, and not a matter for politicians. Any evidence that travel was harmful was insufficient to challenge this lapse in geographical knowledge, or take note of the many individual sacrifices that this policy necessitates. It was up to the board to resolve.
The board was again approached in 2016. As care, compassion and common sense, combined with a compelling correlation between mortality and treatment pathways, had consistently failed over almost three decades, a positive response was welcome and surprising. It was finally acknowledged that there had been no review of the care pathway. An internal paper to the board was tabled in December 2016. Disappointingly, it opened with 'transport solutions,' 'existing budgets,' and, underlining the institutional bias towards Edinburgh, that in the event of opting to change to Glasgow 'patients who may experience difficulties in accessing Glasgow for treatment may request that they are seen in Edinburgh.'
This last has to be seen in the context that nowhere in Dumfries and Galloway is closer in travel time to Edinburgh, and currently patients who are several hours travel closer are refused Glasgow appointments. Evidence of patient satisfaction was tabled but did not mention travel. This was presumably not asked. It concluded by ignoring the elephant in the room: 'The key objective is to develop transport solutions.' Logically, there is less need for transport solutions if there is less transport to be provided.
The paper also stressed the need to stay in budget. In May 2016 the board wrote stating: 'NHS D&G...contributes to help fund voluntary transport arrangements across the region.' This is not true. The chair of the board also chairs the endowment fund, a charitable fund from public donations that provides funds to the Stranraer St John's charity for travel. In contrast, transport from Dumfries is provided by the board. The board also accepted funds from charitable Macmillan funds to build a chemotherapy unit. This facility is often under-utilised, unlike Oban with a similar population supported by Glasgow oncologists. Yet another review is currently being conducted by Macmillan at a cost of £340,000 in charitable funds. This review is led by the Macmillan development manager for south and east Scotland and is based at a large Edinburgh hospital. Feedback is that this is likely to support the status quo.
The board could use funds to help in the same way as other boards. Other boards recognise that patients may be required to travel significant distances to attend hospital appointments. Under this scheme, patients are entitled to financial assistance with their travel costs if they live more than 30 miles from the hospital they are attending. Given that the majority of Scottish patients travelling over three hours to their cancer centre are from west Galloway, and that the board saves money from less frequent admissions, and a third of the miles they travel are unnecessary because of an administrative convenience, this would not seem at all unfair. Unless you are a board senior executive or accountant. There seems a basic injustice when the population of a remote community reduces the health budget by receiving less specialist care, yet suffers from increased cost of travel and additional discomfort and hardship.
There is a more urgent and significant inequity not related to cost, patient convenience, care or compassion. New research from the British Journal of Cancer has established even more convincingly what previous research strongly suggested that travel per se
contributes to the death rate. It raises the evidence for a rational care pathway to a new level. The study, 'A cancer geography paradox? Poorer cancer outcomes with longer travelling times to healthcare facilities despite prompter diagnosis and treatment: a data-linkage study
' concludes: 'greater mainland travel burden was associated with more rapid cancer diagnosis and treatment following GP referral even after adjustment for advanced disease; however, these patients also experienced a survival disadvantage compared with those living nearer. Cancer services may need to be better configured to suit the different needs of dispersed populations.' Translated, that means that more travel means increased risk of cancer death, even if you are diagnosed and treated earlier.
It is now very hard to escape the conclusion that the policy of referring patients to the wrong hospital has been causing not just unnecessary suffering but unnecessary deaths.
It is depressing that none of the reasons for the status quo seems bound in any of the fundamental and important values of the NHS: care, compassion, equality or common sense. Worst of all, it blatantly snubs compelling evidence. Good evidence based on sound and frequently cited published research has been comprehensively ignored or misrepresented for whatever reasons. A proper independent review is nowhere to be seen and is long overdue.