Western Isles patients receiving cancer treatment on the mainland are more than £500 worse off due to travel costs and other expenses, according to a survey by a support organisation on Lewis.
The survey was launched by the Western Isles Cancer Care Initiative via its Facebook page last week. It has so far found that 100 per cent of the 25 respondents who had taken part as of Monday 22nd April were negatively impacted financially – with one person reporting that they had attended 30 appointments on the mainland during their treatment.
The Western Isles group is urging the Cabinet Secretary for Health, Jeane Freeman, to make amendments to the current patient escort policy in the Western Isles.
In the past local GPs were able to approve patient escorts for Western Isles patients travelling to the mainland for appointments. However, approval now has to come from the Western Isles Medical Director’s office following a policy change first introduced through a pilot scheme in 2017.
Last year the Free Press reported on a petition launched in December by the local cancer care group, which sought to challenge the change in approval. The group recommended that escorts should be available for anyone attending a mainland appointment for a potentially life-changing diagnosis. They say anyone attending an appointment – once diagnosed – involving air travel for their treatment, and that specialist nurses directly involved with a patient’s care – such as a Macmillan nurse – should be to recommend approval of escorts whilst patients are in their care, rather than being referred through the medical director.
Speaking to the Free Press this week, WICCI development manager Helen Sandison said: “We are trying to get a formal response from the health secretary, Jeane Freeman, and our MSP Alisdair Allan has been working with us on this.
“We had a holding letter in January, and I know there have been meetings with the health board to try to come to some resolution. Discussions are positive, from what I hear from Alisdair Allan, but we have not had a formal response yet.”
The petition launched in December has so far attracted more than 1,600 signatures but now, five months on, Ms Sandison said she was keen to “get a formal response from the health secretary’s office”.
Ms Sandison said that WICCI launched its survey to gauge how much people were spending during their treatment, how many times they had been required to travel and whether they had any issues obtaining approval for escort travel.
“We had some really shocking responses,” she said. “There was a couple who told us that while the wife was having treatment in Inverness, the husband was sleeping in his car because they could not afford accommodation. Other people have said that they have even put off treatment because they could not afford for anyone to go along with them.”
The WICCI manager said that rearranging flights if appointments were prolonged or delayed had previously been the responsibility of NHS Western Isles. However, that responsibility was now being left to the patients or their friends or families.
Commenting on the impact of this change, she said: “I had a case the other week where a woman was accompanying her severely-disabled grown-up son to Glasgow and every second day she was told that he would be discharged only for something to hold that up. She incurred costs of over £800 over a two-week period – she didn’t order breakfast in the morning because she was worried about how costs were escalating.
“It was genuine costs. Her son is registered blind and uses a wheelchair. She was paid to go away as an escort and it ended up that she was away for two weeks with him at a very traumatic time for them all.
“She is from a low-income household and she has had to pay over £800 in those two weeks rearranging flights and accommodation. She only received the ‘cap’ amount of £300 back.”
Highlighting the survey results to date, she added: “We have had 25 responses so far and 100 per cent have said they had been negatively impacted financially by going through their cancer treatment, and 100 per cent said they needed emotional support going to their appointments.
“I think on average respondents were £500 worse off. It is a huge of amount of money.
“There was someone who said they had 30 appointments on the mainland during their treatment – that’s a huge amount of time, expense and stress. The majority of these people are elderly, so it really is quite astounding what’s going on.”
NHS Western Isles has stated that patient travel cost in the region of £31 million over the last 10 years and that “savings in cases where escorts are not required could result in significant amounts of money being reinvested back into patient care in the Western Isles”.
To take part in the survey, you can visit the WICCI Facebook page
By Adam Gordon