I have an appeal next week for a 17 year old girl , previously in receipt of Higher rate care- dropped to zero award on Review. Pending appeal, she was awarded lower rate Care for needs during the day, however, I feel she might meet the mid rate care as she has to be enteral fed 3 nights per week.
The feed requires setting up and when running requires constant vigilance as the tubing tends to kink which sets off an alarm. The feeding tubes can become disconnected which results in spillage all over the bed, During these times, between 10.00 pm at night until 8.00 am in the morning, her parents have to be alert, awake and active, ready to intervene. This results in setting up/ disconnecting the feed, stripping and cleaning the bed linen,provide clean nightwear for daughter, remaking the bed and resetting up the whole process. This is not predictable, but incidents happen on a regular basis. Any discharge will require medical attention as it may indicate infection.The gastrostomy button needs cleaning and turning daily- enzymes also have to be administered before and after the feed.Setting up and basic disconnection takes approximately 15 minutes each session. When tube kinks and alarms and spillage ensues, repeated and prolonged attention is given. Carer has to get in and out of bed after attending to needs . There is a need to be alert to the feeding pump noise throughout the night and morning during which both supervision and attention is given
Thought Mallinson might be useful ?
Has anyone any ideas on how best to present this ?

Thanks

Dorothy Langman

Adult CF Unit, Northern General Hospital, Sheffield.