The wife of a man who needs 24-hour care after being struck down with a rare disease has raised concerns after struggling to get hold of the medical supplies he needs to stay alive.

Ken Longstaff, from Darlington, is reliant on care for his everyday needs after being diagnosed with Guillain Barre Syndrome in 2012.

The condition left him in a locked-in-state for seven weeks and the 64-year-old, who has discovered a talent for art since his diagnosis, is now confined to a wheelchair and requires 24-hour care.

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His wife Beverley, 62, has raised concerns about obtaining essential medical supplies over the last six months via the Darlington district nursing team, through which she is meant to be able to order them through.

County Durham and Darlington NHS Foundation Trust, who runs the team, has said issues with global logistics were having a “significant impact” on the supply of some items across the North East – but moved to reassure patients that the trust was working to make sure patients were never without essential equipment.

The Northern Echo: Ken Longstaff, from Darlington Ken Longstaff, from Darlington

Mrs Longstaff wants to raise awareness of the issue after struggling to get hold of spare tubing for her husband’s tracheostomy, which he needs to help him breathe, as well as a special type of water that is essential for his ventilator, which he needs at night.

He usually keeps a spare set in his bag, which goes everywhere with him, as well as two at home.

However, the couple have been struggling to replace the kit as it is used and recently logged a safeguarding compliant due to the difficulty in getting hold of the tracheostomy tubing. 

She said: “I had an incident where they said they couldn’t get a tracheostomy. I kept trying and trying and then they sent one that was completely different.

“We got to the stage about a week ago where we were down to one, which is the one he carries at all times."

Recalling an incident last week, she said she was called at 5am by his carer to assist because he was struggling to breathe. 

After being unable to clear his airways using suction, she was afraid she would have to use the unfamiliar tracheostomy, and then would be in a position where she did not have a spare in case of another emergency. Fortunately, after several attempts they managed to clear the airway.

She added: “My issue is that if we had to use the other one and it hadn’t worked then I have a dead man on my hands.”

The Northern Echo: Ken Longstaff has discovered a talent for art since his diagnosis Ken Longstaff has discovered a talent for art since his diagnosis

Mrs Longstaff, who works as a receptionist at the Woodland Hospital, in Darlington, spent several days last week trying to source equipment, which she has managed to get from ICU’s at James Cook University Hospital, Middlesbrough, and Darlington Memorial Hospital.

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She said: “The only reason we’ve got them is because I’ve begged, borrowed and stolen from other people. I’ve got them from ICUs but that means that they are now down those supplies.

“There will be people just like us who are struggling to get supplies and they don’t have the contacts we’ve got.”

She added: “We are kind of lucky because of where I work, I have some contacts. What about an OAP who doesn’t know who to ask for help? It puts people at risk.

“It shouldn’t be something I’m dealing with at all. People need to know its an issue.”

A spokesperson for County Durham and Darlington NHS Foundation Trust, said, “The current global manufacturing and logistics issues are having a significant impact on the supply of some clinical and other items across the NHS.   We work closely with the NHS supply chain to source alternative products when necessary. 

"Our patients always come first and we fully understand Mr Longstaff’s family’s anxiety that some equipment isn’t currently as readily available as it has been previously and apologise for the concern this has caused them. We are in close contact with Mr Longstaff’s family to ensure they have the equipment he needs.” 

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