11 Apr The complex interplay of practical, physical and mental factors affecting patient experience
Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:
We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction. In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information. Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates. Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one. Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.
A discussion ensued about potential courses of action and then Jo explained what had actually happened. The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation. There remained other ongoing and unresolved issues. At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.
Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?
Kevin had longstanding depression, he lived alone with no family in the UK. He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.
The outpatient appointments that Kevin was sent were invariably early in the morning. Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go. Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.
So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.
Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved. It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.
Health professionals are dependent upon patients engaging with them. The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.
Kathleen Gillett, Dorset Macmillan Advocacy