Tom

Tom is married and has three young daughters. Tom and his daughters all have autism, his youngest daughter is non-verbal. Along with his family and looking after his health, Tom’s life revolves around ant keeping. What started as a hobby with one colony has now evolved into over 100 colonies, along with several other animals. He documents this on his YouTube channel, which currently has over 1,000 subscribers. His aim is to reach the number of subscribers that would attract advertising, and therefore generate an income for his family.

At the age of 17 he spent about a year in hospital and was diagnosed with eosinophilic pneumonia, bronchiectasis, and emphysema. He has since developed osteoporosis because of the medication he took for the emphysema. His medical conditions affect his daily life, and he is registered as disabled.

A typical day starts between 4-5am with Tom being woken up coughing for about an hour. He spends much of his day helping his kids and creating content for his YouTube channel. His drive is to make his kids’ lives better.

Tom finds exercise really helps with his medical conditions, although his health now means he is not able to train with as much intensity as before. Previously Tom would train in the gym every day for several hours towards strongman competitions and triathlons. He keeps up exercise now, but just for fun.

His medical conditions mean he needs regular support from health services and will often need to be admitted to hospital and has found transport an issue. When he’s admitted to hospital in Dorchester, it’s normally by ambulance. When he’s discharged, he will have to make his own way home. Neither Tom nor his wife drives, so he relies on public transport. There was one occasion when this wasn’t possible, so he ended up walking home from Dorchester hospital. When he was younger patient transport was available to get him home, but this hasn’t been offered to him for a long time.

Tom also had regular appointments at a specialist unit in Southampton Hospital, which he had to travel to by train. The tickets are quite expensive, and although he has been told about a reimbursement scheme, the process to apply is complicated and time consuming. Tom has given up on trying to apply for a reimbursement and, because of these barriers, has decided he cannot go to Southampton for the appointments.

His experience of the GP practice on Portland is mixed. When he manages to speak to a health professional, he receives good service. Getting through to a doctor can be difficult, and Tom feels the reception team can act as a barrier to him speaking to them. One particular experience he received earlier in the year led him to make a formal complaint.

Due to his mobility and transport issues, Tom can only really attend an appointment at his closest surgery. This has proved an issue, as he has difficulty trying to get an appointment there.

He also received a text from his GP surgery to say due to his complex health needs they are no longer able to support him, and he should now go straight to his hospital consultant.

Tom has found Island Community Action (ICA) to be a good support for both him and his family. He keeps in touch with information about Portland from the various Facebook groups for the island.

Key takeaway:

Tom knows the GPs on Portland love what they do and want to help people. If there is one thing he would like to improve, it is the infrastructure around doctors to enable them to do their role more efficiently.