As Occupational Therapists, do you sometimes find that you don’t have sufficient information about a client, and that time pressures and the environment of an assessment can make it difficult to get a holistic understanding of their situation and wishes?
Created by Nicola Murgatroyd, a mother of a child with long-term complex care needs, MyLiferaft is an online place to store and manage an individual’s health, care and well-being information. Originally set up to support parents who were caring for children with long-term conditions and special needs, it quickly became clear that MyLiferaft could be used by families and individuals, young & young-at-heart and their wider care-circles.
As part of our original design phase, we received over 400 responses to our survey which included the following groups of people:
- Individuals receiving support = 27%
- Family and friends giving support = 60%
- Professionals from within health, social care and the education sector = 12%
Respondents indicated those who supported them in their ‘care circle’ were: family members 57%, GP 57%, consultant/specialist 41%, therapist 26%, social worker 24%, friends 21%.
Three of the questions they responded to are shown below as we tried to understand some of the challenges they faced.
As you can see from above, there are still gaps in the communication among the care teams and a consistency in providing a clear and ‘joined up’ level of care – our data confirmed this was regardless of whether the care team was made up of family, friends and/or professionals
This corroborated for Nicola that her own experiences were not unique – “My personal experiences gave me a first-hand insight into the problems and challenges faced by people who live with a long-term condition. I realised that gaps in sharing information across health and social care still existed several years after my own experiences.”
The complex and often fractured communication pathways added to the level of stress and anxiety experienced by a parent carer who was constantly worried that vital information would be missed. If those in the care circle are not communicating with each other and the parent, then the child can also suffer unnecessary stress and anxiety.
Supporting the Care Circle
As an OT you need information about the person who has been referred to you, this generally comes by a referral form and or a face to face assessment. The completion of such forms is a stressful task for parents, they want to be the best advocate they can be for their child, but finding the information can take hours; it can also be painful to have to focus on what their child can’t do. The information in the assessment form can come across as one-dimensional view.
Our research has shown that the importance of collaboration and delivering actions and interventions in a consistent way, is vital to achieve the desired outcomes. However, this collaboration is one of the most difficult to achieve as instructions get lost, programmes and circumstances change, and new people join the team. There is a constant need for exchange of information so that interventions can be adjusted in line with changes. MyLiferaft bridges these gaps in personal care, and supports the sharing of this information. Everyone gains, the carers and individuals become more engaged and empowered and professionals have a way of understanding their clients and ensuring their plans are accessible to all who support them.
Supporting the Individual
Anna is a parent advisor at the OWL Centre and has two daughters, one with ongoing medical needs – “Throughout Scarlett’s life, the professionals around her have encouraged me to “write everything down” and MyLiferaft allows me to do just that. Using the About Me pages, the journal and the calendar functions, I really appreciate being able to keep everything in one place and to be able to check everything is on track – and all from my phone. MyLiferaft is able to pull through the information that I have already entered elsewhere in in the system to populate the onerous and lengthy DLA form. It is also proving a great time saver as I prepare to move Scarlett from a statement to an education, health and care plan (EHCP).”
To read more testimonials like Anna’s, click here.
MyLiferaft works in collaboration with the TSA Voice, UK TeleHealth Care and Barnet & Southgate College driving forward advances in assistive and digital technology.