The Thomas continuity plan

Matt Devney’s flexible working conditions don’t just make his life easier – they could help save his son’s life. Matt works in IT security for Lloyds, but instead of going into the main office, he often works flexi hours in a local hub so he can get to his three-year-old son Thomas within 15 minutes.

Thomas suffers from a genetic abnormality which means that his windpipe doesn’t close when he is swallowing so liquid, from drinks or foods like grapes or oranges, can enter his lungs. This causes damage to the lungs and a disease called Interstitial Pneumonisis and Bronchiolitis Obliterans, which also makes him more susceptible to infection and viruses.

The condition took a long time to diagnose and in the meantime Thomas’ lungs had become damaged to such an extent that he needed hospitalisation. After diagnosis he underwent a gastrostomy operation to install a gastric feeding tube into his stomach. He can eat solids, but has to have liquids fed through the tube three times a day and once at night. However, if the tube comes out during the times he is being fed water, it has to be reinserted into his stomach within 15 minutes or the hole will close up and he will require surgery. That would mean he would have to have an anaesthetic and, given his damaged immune system, that would be more risky than for healthy patients.

Matt has been working from a hub office for almost two years and he is also able to start his day earlier or end it later to allow him to take a couple of hours out in the daytime to take Thomas to the many doctor’s appointments he has to attend.

Every time Thomas switches preschool setting – he is due to move from preschool to a new school in September, for instance – or when preschool staff change Matt also has a session with them to explain Thomas’ situation. A gastronomy nurse explains the medical side of things, but Matt talks to staff about how to keep Thomas happy the process so that it all goes smoothly. “It’s the personal bit,” says Matt, adding: “I love telling people about Thomas.”

Hospital visits

Matt and his wife Cathy noticed something was not right with Thomas at six months when he was not feeding very well and kept getting viruses. He was admitted to hospital because he was not breathing well and tests were run. By the time he was one he has been diagnosed with a fatal genetic condition. Matt and Cathy, who have three other older children, went into freefall, but had to keep going for the rest of the family. Matt was working full time at this point. He let his colleagues know what was going on to avoid them asking painful questions about how Thomas was. “I would freeze when people asked me how he was. I preferred to tell them in a managed way so they wouldn’t ask the question. That enabled them to support me. I was in a bad place emotionally,” says Matt. He was able to take time off for regular tests.

After about a year of Thomas’ DNA being sent to China, France and the US, it was discovered that he did not have the initially diagnosed condition. “It was the best news ever,” said Matt. “Now he had his future ahead of him.”

When he had his gastrostomy operation about two years ago, Thomas was at nursery. Matt said he was aware immediately that the nursery staff would not be able to cope without him as back-up. Cathy is a teacher in Bradford [Thomas’ nursery is in Halifax] and it is more difficult for her to take time out for emergencies during the school day.

Matt spoke to his team about what sorts of ways he could work which would have the least impact on the team and ensure Thomas got the care he needed. “My department were really good at recognising my need to be flexible and allowed me the ability to vary my place of work on a day to day basis. They are also not prescriptive of when I start or end work. We defined the risks for Thomas and put together a Thomas continuity plan for when he changes his setting or staff,” says Matt. His manager also gave him special dispensation to park just below his office so he can be sure to get to Thomas in time if there is an emergency. This has so far only happened once and everything went to plan.

While Matt deals with what he calls ‘the touchy feely’ side of things, Cathy who used to be a senior special needs officer for the local council takes care of the more professional side of Thomas’ support. Their other children are aged 11, 8 and 7 and are very aware of Thomas’ condition. for instance, they are careful not to disturb his tube when he is feeding or to grab him around his middle when they are playing. Matt says children at his preschool find him interesting and Thomas is not at all self conscious, but they are aware that they have to be careful when he is feeding and has his backpack on with his water pump in it. “Without the tube on, no-one would know anything was wrong so the children need to know to be careful,” says Matt.

Loyalty

He says being able to work around Thomas’ care has meant he has formed “an unbelievably close relationship” with him. “We have grown really close as we have spent so much time together. I wish I could have the same relationship will all my children as each one is very special,” he says.

Matt has worked in his team within Lloyds Banking Group since 2012 and feels tremendously loyal to them, “My manager said to me ‘whatever you need to do we will support you’,” says Matt. “That kind of open dialogue has meant a great deal to me. My team treat this as like another business process and just factor it in.”




Comments [1]

  • Anonymous says:

    This family has gone through tremendous pressures and devastation – they have worked as an incredible team and come through an extremely difficult time. Support from employers and colleagues is vital in maintaining the needs of the family and it's individuals. There are still many pressures but the unit remains solid. Well done to you both – Lynn x


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