Katie and Karen’s Story

Katie MacKenzie, aged 26 and from Hull, has Rett Syndrome and is dependent on others for all daily living. A personal health budget was used to recruit specific personal assistants for Katie. This brought health and wellbeing benefits to Katie, explains her mother Karen.

Since Katie’s diagnosis with Rett Syndrome when aged two, there has been a gradual progression of Katie’s condition resulting in her now being dependent on others for all aspects of daily living.

When aged nine Katie had to have rods fitted to her spine due to scoliosis. At 12 Katie could no longer swallow and had to have a gastronomy button fitted to her stomach. More recently Katie has had to have the upper part of both femurs removed as she was in constant pain from her hips dislocating. Also, as part of Katie’s condition she suffers from epilepsy and has seizures that vary in frequency and severity.  Everything Katie needs has to be done for her.

But as a family we do not focus on the deterioration or severity of Katie’s condition – that is just how Katie is. I would never want anybody to feel sorry for Katie or us, as regardless of Katie’s condition we have some fantastic times. For instance, Katie has been a model for a specialist buggy and has been part of a local ‘Genes for Jeans’ advertisement campaign.

Katie is also a loving aunt to her two nieces and two nephews.  Katie used to attend a day centre for adults with learning difficulties on a full-time, 5 days a week basis. But it was not really the most appropriate place as due to staffing numbers, staff were unable to provide the required specialist care, for example when she had seizures. When Katie was at home I cared for her. I worked part-time and my husband full-time.

The only other support we received was when Katie went into respite every other weekend. But again it is never real respite as should Katie be ill or have a number of seizures they were unable to cope with Katie’s needs. The carers just did not have sufficient time, knowledge and training.

“…it was not really the most appropriate place as due to staffing numbers, staff were unable to provide the required specialist care, for example when she had seizures.“

Eventually, after I realised the situation was detrimental to Katie and too stressful for us, I took voluntary redundancy and requested more support from our care co-ordinator.

Katie then received a Continuing Healthcare package of one and a half hours care at home in the morning and three hours in the evening, seven days per week. Also the respite care continued. I was relieved because of the physical strain I had been under from performing all of Katie’s personal care on my own.