Paul Thomas

The June 2024 COIN meeting - https://www.youtube.com/watch?v=7wfRD_mAVVs&t=9s - discussed a Course to help Carers thrive in the complex world they find themselves in. Carers, like GPs, have to deal with whatever comes their way – every aspect of health and care. One person alone cannot do everything. The image below shows that networks of multidisciplinary teams can deal with many things at the same time.  The image is described further in a 2022 paper about Community-Oriented Integrated Practice: https://www.healthmatters.org.uk/Library/coip_0322.pdf (p28). 

Seven modules/questions:

Participants ask seven questions (seven modules) of their specific contexts to help construct a good way forward at that moment. Each question has three subsidiary questions not described here; each of these proposes three areas to explore. They can ask them again and again as needs change. Theories relevant to the questions can be explored at different levels depending on the needs of the learner. 

MODULE 1 – THE STORIES. How can I describe my situation from different perspectives?

This helps to realise that every situation is different and different ‘stakeholders’ will see it differently. They will be at different stages in their lives, make different assumptions about what is going on, want to achieve different things and have different skills to manage the situation. Their stories about the situation will naturally be different and change over time. Some will imagine that their perspective is the only one.  What I do may affect others (and myself) in ways that I do not straight away see; and I will have my own subconscious motivations. I must patiently allow this swirl of perspectives to surface and be considered.

MODULE 2 – HEALTH FOR ALL INVOLVED. What do I want to achieve?

This helps me to appreciate my own self as a Carer. To care means to help other(s) to move their life stories forward in positive ways. This includes their networks of relationships since these are all part of the story. Anyone who helps to do this is a carer. He/she/they might be a family member, friend or stranger, live nearby or far away, be paid or unpaid, be full- or part-time. Those who carry a main responsibility for caring also need care - so Caring, Self-Care and Shared-Care need to be entwined. 

MODULE 3 - PERSONAL CARE. What jobs need to be done?

This covers what many imagine that Caring is limited to – the DOING bits. By listing the things that might need to be done, I can see that I cannot achieve them on my own and I must plan how to share the load. 

MODULE 4 – BUILDING A CARING ENVIRONMENT. How can I build a caring environment?

This helps me to make it easy for all involved to appreciate others. LOVE and CARE include delight in the happiness of another(s). They are inside healthy relationships, compassionate communities, and healthy deaths. As a Carer I must develop a caring environment that makes the most of positive aspects and stimulates joy and good memories. I must avoid actions that I might later regret; and use difficulties to become stronger and wiser. 

MODULE 5 – PLANNING IN COMPLEX SITUATIONS. How can I plan for a Healthy Death?

Healthy Deaths needs plans for: 1) Dying, Death and Bereavement. 2) Participation of Families, Friends and others. 3) Opportunities to Learn – about Citizenship, Love, Teamwork, Myself. I need to distinguish between things I can control and things I can’t. I may not be able to change the diagnosis of a terminal illness, but there is plenty I can do to facilitate a Healthy Death: Wills; Advance directives; Power of attorney; Complete unfinished business; Tell a life story; Build a community; Have fun.

MODULE 6 – COMMUNITY-ORIENTED INTEGRATED PRACTICE. What can I expect from others? 

This helps me to understand Community-Oriented Integrated Practice. This aligns people to geographic areas and purposefully develops: 1) Multidisciplinary Teams for Whole System Integration, 2) Cycles of Collaborative Learning & Coordinated Change for Incremental Transformations, 3) A Sequence of Initiatives to develop Compassionate Communities, 4) University-Linked Localities to evaluate Collaboration.

MODULE 7 – GRIEF. How can I turn Bad into Good? 

This module helps to understand grief. When someone dies, I have lost the part of my life story that I share with him or her. Good can come out of this situation if I allow myself to flourish in other ways, weaving threads from my past life into new story-lines. 

Comments - see the video - https://www.youtube.com/watch?v=7wfRD_mAVVs&t=9s:

• Many universities are interested in this approach for the learning of all professions, not just medicine, at post- and under-graduate levels

• Dementia care is a caricature of problems in the whole caring field - too much emphasis on cure of physical aspects and too little on Psycho-Social-Spiritual Care

• Caring is a part of life in general and thinking about it is distorted by medical labels that compartmentalise people, badly affecting human relationships.

• Especially when people aren't thinking straight, the links between mental and social health are huge; people invent many unhelpful stories in difficult situations.

• If we learned to care well for people with dementia we would create a better, more friendly and caring society 

• Whatever we design for people with immense needs we will not get it - there is no money

• Make training small - inexpensive and easy to deliver

• The course aims to ask questions that help participants to understand their own reality, part of which may be the lack of money

• The course could offer a framework for thinking that will help carers to look back and say that they did the best they could have, given the context

• We forget at our peril that some people use caring to cause harm and be cruel

• Some abusive behaviour can be entrenched and normalised - this is very concerning

• The aim of this course is to support people and help them to think differently

• “When I cared for my dying father some people were not helpful or supportive... quick to criticise... so I recognise that this (abuse of Carers) happens”

• We need to find ways forward that makes sense to those who think differently from us. This includes agreeing appropriate research and cost-neutral approaches

• It's very easy, when the family is caring, for others to come in and ruin everything, seeing things from different points of view

• Teamwork from the beginning and throughout can help prevent damage from external people

• Important to educate and support the people doing the caring. “Those who won't work as a team need to get out of the boat”

• Informal Carers can easily take on too much and not realise how stressed they are. Good friends help them to know when to step away and help them to do this

• The best way to learn is from experience

• Important for the cared-for and the care-giver to feel that they have agency; both need support to achieve this

• A successful approach makes those involved feel part of a community of care. It doesn't matter what your title is - we are all family

• In Denmark, it has become normal to take part in self-help groups, organised by Municipalities. For example, new mothers are assigned to groups to share experiences. The same thing could be used for carers - it costs very little

• In the UK there is a national organisation that gets (some) expectant parents together and they often stay together after the birth

• The social role of carers is very important and needs to be formally valued, developed, expected, taught

• Children involved should have a routine annual call and asked: 'how are you doing?'