ADULT SOCIAL CARE FEATURE seen him and his family at home many times , albeit in full Personal Protective Equipment ( PPE ).
Due to the nature of his illness , Alex ’ s abilities have rapidly changed over this time ; he has needed an increasing amount of specialist equipment and home adaptations , as well as physical care . In preparation for a request to increase his Direct Payment care funding , I asked if he was able to send me his views of his situation to include in his assessment . These words are Alex ’ s own : ‘ It was quite hard to write the following . From the heart , with tears in my eyes . Good preparation for my counselling this afternoon .
‘ My view : I have a loving and supportive family , a good work situation and many ways to find meaning in my life , but all of this is quite precarious .
‘ My relationships with my wife and children are the most important parts of my life now . My wife is overburdened : parenting and running our home without my help , acting as my advocate and assistant for health and care needs and much of my admin and communication , trying to plan ahead for further adapting the house , maintaining some potential for earning a living once I stop being able to provide our income , home schooling ...
‘ Not to mention coping with her own struggles around identity , her hopes for the future , grief . Our relationship is often strained by all this .
‘ The children react to this , Lois showing clear signs of depression and Jago withdrawing . Some days when things are at their worst I barely interact with Laura or the children and feel helpless and guilty .
‘ I ’ m very pleased to still be able to work ; it makes me feel valuable , I like my colleagues and employer and I want to continue to be useful to them , plus it feels good to earn an income for my family . Like anyone else , my ability to work doesn ’ t just depend on my skills and experience , but also on my well-being .
‘ So the family situation influences how successfully I can work . I also need personal care support more frequently and this impacts on work and on Laura .
‘ For example , this morning my eye was irritated by a stray hair and I had to call Laura in three times to resolve the problem , delaying my work by half an hour ( this was between carer visits ). The smallest things can cause a problem because I have so little physical independence now . If I tilt my head too far to sip a drink , my headset falls off and I can ’ t use the computer until someone puts it back on for me .
‘ I love my wife and kids . I want there to be room for more good times with them . I want my kids to grow up knowing who I was and feeling that despite my illness they still had a father who loved and valued them .
‘ I ’ d like my wife to be able to look back on this period and feel we had a chance to be husband and wife , to share and feel close despite how difficult things are and that she didn ’ t lose her own identity and self-worth with so much responsibility falling to her .
Scottish Social Services Council website : Personcentred care during the COVID-19 outbreak : what matters to you ( https :// learn . sssc . uk . com / coronavirus / personcentred /)
Social Care Institute for Excellence ( SCIE ) website :
RESOURCES
Building rapport using technology in social work ( www . scie . org . uk )
‘ My biggest fear about the future is that we are overwhelmed by our situation and that all we manage to do is survive , day-to-day , until I ’ m gone , leaving a single mum and two kids wounded for life . I believe with enough support we can find a much better path through this experience , for me and them .’
Wow . As you can imagine , this stopped me in my tracks and gave me a lot to reflect on ( once I ’ d stopped sobbing ).
When I presented the request at peer forum , starting by sharing Alex ’ s story and photos on the MND Association website and including the above e-mail in his assessment , a colleague remarked that it was the most person-centred presentation she had ever seen .
Although a lovely compliment , it also made me think – shouldn ’ t all our work be this person-centred ? Have remote assessments unwittingly made us more remote from the people we support ? When I visit someone at home , it comes quite naturally to use their home environment as prompts to start developing that therapeutic relationship and getting to know what is important to the person – commenting on photos of holidays or children , interacting with pets , noticing hand-painted pictures , or a piano .
How much non-verbal communication and body language do we pick up on ? How much of this are we missing during phone assessments ?
I ’ ve found that even simple WhatsApp video phone calls can give more of a personal approach . I know we need to be proportionate and not everyone needs an in-depth assessment . But sometimes , just asking ‘ What ’ s important to you ?’ can give the most profound answers .
So , in this brave new world of remote assessments and home working , the thing I take away most from this is to never forget who we are working with , actively seek out and listen to their voice and to keep them and their loved ones at the centre of our practice at all times .
Andrea Laker , occupational therapist , Mendip Adult Social Care , email : alaker @ somerset . gov . uk . * Note : this article was written in February 2021
Alex has given his full permission for his family ’ s story to be shared in this way – many thanks to them all . For more of his story and resources about motor neurone disease , read ‘ We have to find a way to beat MND ‘, at : www . mndassociation . org / get-involved / donations / alexs-appeal /
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