Child and family

"Transformed our care experience, I am finally able to be her mother spending quality time instead of acting as her case manager" - Alison

Posted on 03 Mar, 2021 | 2:12 AM

Background

Katie is a 8 year old child with Cerebral palsy and Autism. Katie mostly uses wheelchair for outdoor mobility and uses a Kaye walking frame with difficulty to walk indoors, but she finds crawling to be easier particularly at home. She has multiple health complications including epilepsy, diplegic spasticity affecting her muscles in her lower trunk and lower limbs, cardio problems impacting her exercise tolerance. She therefore has complex physical and mental health needs including behaviour problems and is being seen by over 15 different health and care professionals across various hospitals, community clinics and in her own school.
Katie goes to a school in Derby city but lives in the border of two counties, Leicestershire and South Staffordshire. She sees various consultants in Derby as well as in Birmingham Children's hospital. Recently, Katie's parents managed to raise funds to have a life-changing surgery, Selective Dorsal Rhizotomy (SDR) in the US. The surgery has provided the family with the hope to improve her physical skills and enable her to walk outdoors with elbow sticks. This is huge for Katie but she needs to carry out intensive physiotherapy, splinting program and other physical activities to maximise the benefits of the surgery.

 

The problem
Katie's parents however have been experiencing difficulties with coordinating the post-operative care. Katie is being seen by multiple physiotherapists in school, privately at home and continues to see the surgeons in Birmingham and the community paediatrician in Burton. The information sharing across all the professionals of the multi-disciplinary team is challenging, parents are expected to be messengers of information. As they are not professionally trained they fear the amount of information being 'lost in translation' that negatively impacts her treatment planning by other professionals. They are overwhelmed, managing huge folders of letters and reports sent by professionals, they are expected to follow home programmes and repeatedly take Katie out of school to attend multiple appointments across different counties. Katie's parents are extremely concerned that they do not get the support that Katie deserves. Katie does not have adequate hours of protected support in school making it harder for her to have regular therapy support. Her parents feel that they have to constantly battle with the system to get the support that Katie deserves.

 

The solution
Katie's parents were one of the first group of families to try EnrichMyCare platform. The platform has literally transformed their care experience. As soon as they created a secure account on the platform, they managed to digitise all her old health records by taking photos and uploading to EnrichMyCare platform. This made it easier for them to store and access her health and care information. There is a dedicated section for maintaining Katie's care professionals list and their contact details. Following gaining consent to share Katie's records, parents are now able to share videos and pictures of Katie's seizures, exercises and splinting with the professionals. This has made it easier for the professionals to intervene at a much earlier stage to minimise the problem and improve her health outcomes. Also, parents are now able to share reports of community paediatricians and surgeons with therapy team and school staff making information available at the right time. Also, parents have requested the professionals to share the reports and therapy exercise programmes directly on the platform so parents can access it anytime. There is no loosing of paper reports or for the need to manage huge folders at home. The ability to access all the records on-the-go with the mobile app is definitely life-changing.

 

Katie's parents have been instrumental in helping us develop the EnrichMyCare platform further, Katie herself has started showing interest in doing the exercises and has even suggested what picture she wants to have as her profile pic!

 

Contact usif you would like to discuss about your individual needs and we would help you with signing up to the EnirchMyCare platform.