Landslip detour adds hours to family's care trips

The parents of a disabled child who spend 15 hours each week navigating a rural road closure to access care for him have taken their fight to Parliament.

A landslip last year shut the main road that Barney and Harvie Strange take from their rural home in Cowgill, near Sedbergh in Cumbria, to Ingleton, where their son Rafferty receives specialised care and their two other children attend nursery.

It means a 20-minute trip now takes 50 minutes, which Mr Strange said was "devastating" for the family.

Westmorland and Furness Council said it was "actively developing" a scheme to reopen the route, however it was aware the process was taking time.

Rafferty, who is 20 months old, has a rare muscular condition which means he is quadriplegic, has to be fed via a tube and has significant difficulties with his breathing.

The family arranged to train a carer who lives in Ingleton, to make the school run and logistics easier, but the landslip hit two weeks after the carer had qualified.

The detour is not just costing the family about £300 more in fuel each month, but is also potentially dangerous for Rafferty, they say.

"With somebody with complex needs as our boy Rafferty, it's really difficult to transport him around," Mr Strange, 40, said.

"One of the problems he has is that he vomits and then he's unable to clear his own airways, so we have to suction his airways or tip him upside down, and when we transport him in the car, that's much harder."

He said much of the caring and driving to appointments was done by Mrs Strange, 39, who also juggles looking after their other two children - Wallace, four, and Dilys, two.

Mr Strange, who works as a paramedic, has set up a campaign group which is pressing Westmorland and Furness Council to find a solution.

Earlier this week, he travelled with his wife and Rafferty to Parliament with a delegation from charity Hospice UK.

The organisation lobbies government for policy change and represent hospices across the UK, including Jigsaw, a children's hospice based in Carlisle which supports the family.

Mr Strange spoke to a group of MPs as part of the launch of a report called Bringing Care Closer to Home, which highlights inequalities that exist in rural communities for those who are dying or life-limited, such as lack of transport and the need to provide care at a distance.

He said he felt listened to by the MPs and the report was due to be considered as part of the government's 10-year NHS plan.

"We were asked to go down partly because of the landslip, but also because of our experience with having a boy who is under the palliative care service, about the difficulties of living rurally," Mr Strange said.

He said the couple chose to raise their children in the countryside "in pursuit of a simple and innocent life," but until he was faced with the challenges of accessing care for Rafferty, he had not appreciated the inequalities faced by families in rural areas.

Rafferty receives specialist care at Alder Hey Children's Hospital in Liverpool, as well as at hospitals in Lancaster and Kendal.

"It's a hard life for us now," Mr Strange said.

"Rafferty is a gorgeous happy little boy, it's just the situation we're in."

The family, together with the community group they set up, are calling for Westmorland and Furness Council to create a temporary route through the diversion, while they continue to find a permanent solution to reopen the road.

Mr Strange said: "We don't want to be in a position in the winter, where we're having to take our profoundly disabled boy over the hills, which are almost inaccessible, and then he has difficulties with his airways.

"That is a genuinely life-threatening emergency that, short of us staying at home for the whole winter, I can't avoid."

Westmorland and Furness Council said it was required to follow legal procedures to deliver a long-term solution and they were aware of the frustration the diversion had caused.

It added the council was working with a contractor to actively develop "a proposed scheme" and was "preparing to carry out the necessary works to reopen the route, which is a top priority for the council".

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