A warning that NHS Western Isles’ Patient Travel Policy has the ‘potential to exclude people living here’ has been issued this week.
One Lewis family, with a young child who suffers from Cystic Fibrosis (CF), say they are having ‘to jump through hoops’ due to an ‘obstructive and unsupportive’ Patient Travel Policy.
“The big issue we have with this policy is that it takes no heed of the bigger picture and the unpredictability of long term conditions such as Cystic Fibrosis,” said the parents.
“The cruel reality is that you can never know when the disease will spring something awful on you.
“I really think if NHS Western Isles is serious about supporting people with long term conditions such as CF to live in the Hebrides, they really need to rethink this policy.”
CF is a genetic condition where the lungs and digestive system becomes clogged with thick sticky mucus and treatment includes a gruelling two weeks of daily IV antibiotics and chest physiotherapy.
Treatment is usually completed at Raigmore Hospital in Inverness; but most recently the child received treatment at the Western Isles Hospital in Stornoway, but the family have been told this may not be available again.
They said that although they have had no problem with the care and treatment their child has received, both in Western Isles Hospital and Raigmore, the issues in arranging travel has caused additional stress and anxiety to what is already an upsetting experience.
Experiences have included a consultant paediatrician assuring the mother and younger child that they would be booked on next available flight, whilst the father and ill child were airlifted to Raigmore, but the family say travel was refused and the family was not reunited until the next day.
The family has also had issues when their child has fallen ill whilst they have been on the mainland visiting grandparents; allowing the parents some respite.
Understanding that if they travelled home the sick child would be flown straight to Raigmore, the family made the journey themselves – but then faced difficulties in booking return travel home, even when the child was due to receive one week’s treatment in Raigmore and another week at the Western Isles Hospital.
The mother expanded: “In the most recent case, after a week and thanks to the willing nurses on the island, we were able to organise the remaining IV treatment to be administered on Lewis.
“This would allow my child to start the new term at school with all his friends and reduce the amount of time spent in hospital.
“I assumed there would be no problem getting home, particularly as my child was due to attend the hospital in Stornoway daily for IV antibiotics. This again though was refused by Patient Travel.”
Previous return journeys had been paid for by NHS Western Isles as a good will gesture following repeated correspondence and appeals from the family.
In response, an NHS Western Isles spokesperson stated that travel was ‘not refused’ in the most recent case, explaining: “The Patient Travel Policy covers expenses in relation to planned appointments.
“It does not cover travel back to the island when patients, for example, are on holiday and appointments are not arranged appointments.”
They continued: “The staff based in the Patient Travel Office have been consistent in their advice and application of the policy to all who have cause to use it. Any response from NHS Western Isles will depend on the accuracy of information it receives, from families, for consideration.”
And added: “NHS Western Isles is fully committed to supporting patients with travel costs to and from mainland hospitals for appointments, in line with the Patient Travel Policy.
“Any patients who meet the criteria within the Highlands and Islands Travel Scheme are fully reimbursed in line with the Patient Travel Policy.”
But an appeal is being made by the family for more understanding towards patients living with long-term conditions: “CF is a hugely stressful and exhausting illness to care for and live with in so many ways. It seems ill thought, for our local NHS provider to have such an obstructive and unsupportive policy in place. I would urge this policy to be changed to reflect the needs of children living in the islands with long term complex conditions.”