How to bring a compassionate community programme into the clinical practice
In this blog we will have a look at
1. Why we should use a compassionate communities approach in clinical practice
2. How this increases the range of our practice
3. Bringing network mapping and enhancement into the clinical consultation
4. Linking community resource into routine clinical care
Introduction – why should we use compassionate communities in our clinical practice?
A compassionate communities approach can be built into clinical practice, face to face with patients. There is a really good reason for doing this. By taking this approach we can enormously expand the range of options we have in helping both patients and families, from diagnosis through to bereavement. We can help people in ways not possible with professional services alone.
A problem for clinicians with new initiatives is to see how clinical practice can be changed in already extremely busy work schedules. Not only does any new intervention have to be a significant improvement to practice, it also has to fit into working patterns. Unless these two criteria can be met, any new clinical initiative is unlikely to gain ground.
A compassionate community approach to care has much to offer, improving outcomes for both patients and caring networks. Projects are underway across all five continents with increasing research outcomes demonstrating benefits in a whole variety of different ways. Taking such an approach can enhance existing supportive networks as well as link to community resource. If clinical teams set up using both of these, it means that doctors for example, can start a process that gets handed on so that the rest of the team can pick up from where the conversations have left off. Doing so makes it possible to start something and refer on without being demanding on time.
How we can increase the range of our practice
In a previous blog, I described the enormous community resource that can be found in the naturally occurring inner and outer networks. This can range from anything to 10 to 200 people. Shortage in the supportive networks can be further enhanced by making use of existing community resource, including but not limited to community resource set up specifically to support those undergoing the experiences of death, dying, loss and caregiving.
The support of family, friends, neighbours, and community members, given with love, laughter and friendship, is life enhancing for all concerned. People give time and effort out of the goodness of their hearts. As Libby Sallnow points out in her PhD thesis, there is a good deal of reciprocity in giving. The people who give gain as well as those on the receiving the gift of giving. Even when professional care is delivered with the same spirit, it is not the same as simple giving without expectation of return.
When it comes to thinking about caring networks, many professionals assume this is solely about hands on care. However, caring is so much more than this. In addition to the love, laughter and friendship, it includes managing all the tasks of life, such as cooking, cleaning, walking pets, doing the garden, giving lifts, picking up children amongst many other things. One of the key functions of the outer network is to support the smaller number of people in the inner network, who can be given time to able to the jobs involved with immediate patient contact. Rather than patient centred careit is helpful to think about network centred care. Looking to the broader supportive network can massively increase the ability of networks to provide meaningful, loving care in the home environment. The increased resilience of networks makes all the difference when it comes to being able to cope with difficult situations at home that naturally arise. Network resilience can therefore reduce the need for emergency admission to hospital at the same time as maximising time at home for the person with the illness. Home is the place we know and love, surrounded by the people we know and love. The reasons why people want to be at home are not just a matter of increased control at home as opposed to loss of control and identity that occurs in institutions. It is related to who we are as humans and where we find meaning and value in life. As Debbie Horsfall and her team at the University of Western Sydney, it is about the ecology of care. They produced an excellent report titled End of Life at Home: Co-Creating an Ecology of Care – http://researchdirect.uws.edu.au/islandora/object/uws%3A32200. This report is worth a good read. It provides may insights into the dynamics of what makes a successful, resilient network at home.
Network mapping and enhancement
Given that networks are the place we find meaning and value in life, the most basic and fundamental clinical skill relating to compassionate communities is therefore network enhancement. Doing what is most meaningful for people by developing networks is key. I will describe in another blog in more detail how this can be done. It is not a one off process. The key to opening the door to network enhancement is to avoid the all to common answer of no, when someone offers help. It may take a bit of discussion, but ‘just say yes’ is the first step to network building. In a nutshell the key steps in network building are
1. Engage the patient AND the main carer(s) in a conversation about the need to build resilient supportive networks that last into bereavement. The bulk of this conversation is with the carer. Most patients do not want many people coming and going in their house. They don’t have the energy and are often concerned about their privacy in what may be very changed circumstances. Network building is about the inner and outer networks, particularly how the outer network can support the inner network with the ‘stuff’ of life. The inner network can be enhanced but as this is with people who have direct contact with the patient, the numbers are usually small and only made up of those who are known and loved.
2. Start the on going process of network mapping – I will post an example of a network map so that if anyone is interested, they can use or adapt the one we put into practice in Frome, Somerset
3. Use an app such as JointlyApp for network organising. https://jointlyapp.com. Facebook groups and WhatsApp also can be used. This makes organising a network much, much easier. Once people have put their names on the list, it becomes very easy to ask the whole group to help. For example, it is easy to put a message out saying can anyone cook a meal on Tuesday evening, rather than having to ring around 20 people and get a number of no’s, which is usually depressing. In addition, if the group see people volunteering to do things, they are more likely to respond positively next time around if they cannot do something this time. I heard a great story about this where someone in Australia had set up a meal group for people who need support using Meal Train https://www.mealtrain.com. There are over 100 volunteers in this group. They had arranged a diary of meals that went on for about 3 months into the future. The people in the caring network eventually said can they not have every night covered because they would like to prepare some food themselves!
4. Once the process of network mapping and enhancement has begun, this information needs to be shared with clinical teams. There are two reasons for doing so. Firstly, the person who continues the process of network enhancement will not have to start all over again. The second reason is that whenever the patient is seen by health or social care services, they will be able to look at the network map and see what kind of resilient network exists. This makes it much easier to see where gaps are and where professional services can help.
Conversations about why it is important to build resilient networks, and how to do so, can start in routine clinical care. I did this on many occasions both within my palliative care outpatient clinics and ward rounds on the hospice inpatient unit. It works particularly well when both patient and carer are there. In part, this is because the patient can see that the carer is getting support. This is a continuing worry for them. In addition, our team became used to the process of network mapping which meant that it could be continued following an outpatient clinic by the community team.
Linkage to community resource
The second skill that is relevant to the palliative care clinician is linkage to community resource. This is complementary to network mapping. Network maps may help to identify areas that need strengthening. This is not always possible from existing networks and further support might be needed from the community. There are two immediate implications from this.
1. The first is that a process of building capacity in communities is already in place. This is done specifically through a compassionate communities approach. Employing a community development worker is a straight forward way of doing this. There are plenty of reasons why employing a community development worker is a good idea, not least of which they become part of the clinical team. Linking to existing community resource is also possible. Many communities have had training in community development with Cormac Russell from Nuture Development, http://www.nurturedevelopment.org, in the methodology of ABCD (Asset Based Community Development). This is an extremely effective way communities can mobilise their resources.
2. Once community resource has been built and mapped, it should be available on a web directory, so that it is easy to access. A fantastic example of this can be found at Health Connections Mendip –https://healthconnectionsmendip.org/mendip-directory/ The team in Frome have designed this so that all of the huge amount of community resource is there and is easy to use. It can be used by the public and by clinicians alike.
Using the web directory fits easily into clinical practice. If it is open when you see a patient, it is possible to expand the range of conversations you have. So for example, if you are doing network mapping and you identify that the person you are talking with is lonely, having a befriending service at your finger tips that has been placed on the web directory means that you can print out and hand this information on to them. As the range of community resources expand, so does the range of conversations you can have. An example is around bereavement. Professor Samar Aoun in Australia is doing great research challenging long held beliefs about bereavement support. It seems that the most helpful support in bereavement is close friends and family, along with other community members. This opens up the possibility of having peer support bereavement groups, such as the buddy group we used to run (https://www.tandfonline.com/doi/full/10.1080/17571472.2018.1455021?src=recsys). Every town and city could have peer support bereavement groups. If this is available on the service directory, it would mean that anyone with bereavement concerns could be offered the possibility of attending a group. This could be done by palliative care team. GP or community member. This is a way of providing some kind of bereavement care for all.
I described in the first blog, a unified model for health care and compassionate communities, https://www.compassionate-communitiesuk.co.uk/blog/, community support is based around naturally occurring supportive networks and community resource built through community development. Bringing this in to routine clinical care expands enormously the range of help clinicians can give. Learning the skills of how to do this is part of clinical learning. The two major areas where clinicians can bring this into routine consultations are network enhancement and linkage to community resource through the use of a service directory.
My recommendation for clinicians is start slowly and find out what works. Your repertoire will slowly and safely expand as you discover what works for you and how you can build this into practice.