Skills

Network mapping and enhancement

Network Enhancement is the primary compassionate community clinical skill

Network enhancement is, in my opinion, the most basic and fundamental skill for clinicians who have an interest in compassionate communities. In this blog, I will discuss

·     What supportive networks look like

·     Why they are fundamentally important in health care

·     How they can be mapped and mobilised

·     Network organisation

What supportive networks look like

Perhaps the easiest way to understand supportive networks and how important they are, is to explore our own. When doing so, it is important to move away from thinking that we are solely talking about people giving help when we are unwell. Supportive networks exist around us all the time. In fact, the effect of them is so profound that they help to keep us alive. A foundation paper for understanding the impact of compassionate communities is Social Relationships and Mortality Risk: A Meta-analytic Review, Julianne Holt-Lunstad, Timothy B. Smith , J. Bradley Layton, July 27, 2010(1). In this paper, the authors looked at the impact of social relationships on longevity and found that they have more effect than any other intervention, including giving up smoking, drinking, diet, exercise and many others. In other words, having good social relationships is the most important factor in our health and well being. 

Inner networks

The place to start mapping is the inner network.  The people in our inner networks are those who are closest to us.  Some of these people are obvious, our spouses, children, close friends and neighbours. We may feel particularly close to our work colleagues. Inner networks generally consist of somewhere between 2 and 10 people, although there are no rules. Some inner networks may extend to 30 people in large families. Having a big inner network is not necessarily better than having a small one. The quality of the relationships is important, rather than the quantity. 

Being geographically distant does not necessarily exclude people from being part of an inner network. Improvement in electronic communications, particularly via the internet, means that we can feel close to and have regular contact with family and friends on opposite sides of the world. 

I have run network enhancement training on a regular basis for the last few years. This is something that can be learnt by anyone. When asking about what networks do, one of the participants came up with the phrase ‘love, laughter and friendship.’ I think this describes the qualitative aspect of the relationships we have with people. When we get on well, there is plenty of love, laughter and friendship. These are the things that we hold dear and contribute enormously to the quality of our lives.  When we think about who is in our inner network, the love, laughter and friendship are key elements in how we relate to each other. 

Outer Networks

 When we start to consider who is in our outer networks, people usually include friends, neighbours and community members who are not in the inner network. In the network enhancement training, I get people to start counting the number involved in the outer network. We then start to count the people who we might not immediately think about being in our networks. We might go to a choir or play a sport. Friendships develop along the way when we are doing something else. Also included are the people we might come across on a regular basis in the community, for example when we go shopping or go to the chemist.  Mobile libraries can be a source of social contact in rural areas. The numbers quickly begin to expand. Outer networks might range from anything between 10 and 200, or even more. 

Light contact can be life enhancing. Even gentle chats with someone we might come across can connect us to the world. This is quite different from the feelings and thoughts that arise for example when listening to the news or reading the paper. 

A common phrase for health professionals, when thinking about someone who is isolated, is to say ‘they do not have anyone around’. However, if we explore the inner and outer networks of our patients and their carers, often there are many more people than we might assume. Looking at the size of inner networks, these might be enormous. Having 50 people around is a very large resource when mobilised. And this is without having considered the community resource of people we do not necessarily know. When looking at a compassionate community programme, stimulation of community resource is an intentional act. Whilst some of this, probably less than 10% is through volunteers, activating community members to look out for the people around them and being friendly is at the heart of it. 

Network mapping as a clinical skill mainly focuses on the inner and outer networks. Linkage to community resource is something that is discussed in the blog on service directories.

Why networks are fundamentally important in health care

A primary experience of ill health is increasing fatigue. This is as true for mental as it is for physical illnesses. Increasing fatigue leads to decreasing social contact, which we know is a fundamental determinant of health. Loss of social contact leads to loss of a sense of meaning and value in life. When illnesses become more severe, the increasing social isolation can affect the carer as much as the person with the illness. Their identity becomes subsumed in their role as carer. When all of this is focussed on a small number of people, then carer exhaustion and the ill health that follows becomes more common. 

When considering enhancing these naturally occurring networks, a major point is to focus the support on both person with the illness and the carer. Often when people are unwell, they may not want to see many people. Asking them to start mobilising networks can therefore be unsuccessful. The focus on the carer is important. The two domains which can be strengthened are practical tasks of everyday life and that of love, laughter and friendship. Practical tasks include the shopping, cooking, cleaning, walking dogs and gardening as well as spending time with the person who is unwell to give the carer a break. The carer needs to have an identity and life outside of caring so breaks are really important. As a wife of a patient said, when she goes out to do shopping, it seems like minutes to her and hours to the patient. He is cross when she comes back and she feels guilty. She did not have time for her own networks, going for a drink or to the cinema for example. Through a fairly simple task of network enhancement, it is possible to help transform the lives of both patient and carers.

One of the ways I start network enhancement training to ask those people who have been carers what helped their caring experience the most.  I have found that when I am running training for a group of health professionals, they usually say that professional care was the most useful thing. I change tack slightly here and ask why people want to be at home when they are unwell. We get to the answer of love, laughter and friendship in the place that they know and love. Once we are here, we can get back on track to see what helped the most. Sometimes emphasising the difference between harm prevention (the main area of medical interventions) and health and well being ( compassionate communities) is helpful. 

How networks can be mapped and mobilised

 At Frome Medical Practice, we developed an ecomap, or network map, that is based around Circles of Care(2).  

 

Network map.jpg

Please feel free to use and adapt it. The network map can be left with families so that they can start filling it in over time. Often starting the process is slow but when the map is left with someone, people come to mind who can be added. 

Barriers and enablers to network enhancement

 Network enhancement is a skill that has to be learnt and developed. There are some very common barriers that will have to be overcome for people to start the process of mobilising their network. These should be discussed from the outset. Finding out what the barriers are is important because unless these are overcome, building a supportive network will not take place. Below are common barriers that I have found come up in conversations about network mapping and enhancement. I have added in some ideas about how these can be addressed. There are many others that will arise and you will  need to find your own solutions. 

    ‘ I don’t want to be a burden’. This is so common that it is part of nearly everyone’s thinking.  I reply to this in a number of ways, depending on what I think is appropriate. When people in caring networks are asked about whether they feel it was a burden looking after someone, they invariably say it was a privilege(3). I will sometimes ask why would you want to deny the people who know and love you the opportunity to look after you when you are not well? This is particularly relevant in the context of end of life care. People want to feel good about how they helped for the last phase of someone’s life. They will carry the memory of this with them for the rest of their lives. It is a chance for example for children to demonstrate their love and affection for all their parents have done for them. 

·     ‘Everyone is too busy’.  I think some of this can be answered by considering how the supportive network functions. If we are looking at a resource of 30 to 50 people, then getting individuals to do a small amount quickly adds up in a significant way. For example, giving a someone ring to say is there anything you want from the shops is the type of task that can be completed without extra work. Someone walking to dog can be something people enjoy.  It can also help to use the example above about  why would you want to deny the people who know and love you the opportunity for to look after you.

·     ‘People aren’t specific about the help they can give’. Another recurring theme is that family, friends and neighbours can say ‘is there anything I can do to help?’ The answer to this is commonly ‘no, we are managing fine at the moment.’ The problem with this is this is how networks are collapsed rather than enhanced. After 3 times of asking, people no longer know what to day and rather avoid meeting altogether. A quick answer to saying no is to say that caring is a marathon not a sprint. This means that it is important to build networks early for the long run. If a carer becomes exhausted and can no longer care, then it is common for a patient to be admitted to an institution.  One of the key phrases for network enhancement is ‘just say yes.’ Whenever anyone asks if they can help, just say yes. If someone asks, then being specific is a good idea about how they can help is a good way of involving them. At the same time, learning the skill of asking is a way of building a network.

·      ‘ I want to do the caring myself.’ As we discussed at the beginning, there is a common misperception that caring is all about the personal care delivered to a patient. But shopping, cooking, cleaning, love, laughter and friendship do not require contact with the patient. These are all important features of a supportive network. This particular way of looking at things also answers some of the problems people have about privacy. Going out for a drink with someone is not an invasion of privacy. Having someone drop a bit of shopping round can be very unobtrusive. 

There are of course, a variety of other reasons why people are reluctant to build networks. The experience of helping people build their networks will be invaluable to finding ways of answering concerns as they appear. Being skilful in listening to people’s worries is the most important part of this. 

Network organisation

 Often the best person to organise the network is not the main carer. There may be a son or daughter who is ideally placed to do this. There are a number of apps that can help enormously. Examples are Joinlty app https://jointlyapp.com  and Gather My Crew https://www.gathermycrew.org . There is something else as well called Meal Train https://www.mealtrain.com. It is possible, for example to put a request out to see if someone can help with a hospital appointment or drop a meal by through putting a request out on the app. This saves the problem of asking someone to do something and them saying no. Normally if a request goes out, somebody will step up. All of this information can be seen by everyone who is invited on to the app as a message. People can then get the idea of how they can help and see other people stepping up to the mark. 

When an app is used, it is possible for a son or daughter living in a different country to organise a network. This helps them as well, as they feel they are doing something to help. The messages are also a good way of keeping people updated, both in terms of things that are going well and when there are problems. This is particularly helpful because it no longer is necessary to ring everyone to let them know what is happening. 

Not everyone will feel comfortable with using an app. This is not necessarily a problem. If there are people like this who want to know what is happening or want to help, it is much easier to talk to them directly and have someone else enter the information on an app. 

Summary

Network enhancement is a primary skill in the context of compassionate communities. Running a network enhancement training is a great way of shifting the perspective of professionals to one in which they come to understand that the most important part of our lives are the relationships we have, not the professional support we give. The professional support is needed and important but is not central. Once the professional perspective is shifted, then it is easier to see how their role becomes one of supporting the naturally occurring networks. Doing network mapping early in the journey of ill health means that networks can grow and become resilient. Where there are gaps, it is then possible to see how the networks can be further enhanced by building in community resource. 

Network mapping and enhancement is a primary clinical skill. It is something which should be done as a matter of routine. Training the broader multidisciplinary team means that all team members can build this into the clinical practice. 

1.         Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS medicine. 2010;7(7):e1000316.

2.         Abel J, Walter T, Carey LB, Rosenberg J, Noonan K, Horsfall D, et al. Circles of care: should community development redefine the practice of palliative care? BMJ supportive & palliative care. 2013:bmjspcare-2012-000359.

3.         Horsfall D, Yardley A, Leonard R, Noonan K, Rosenberg JP. End of life at home: Co-creating an ecology of care. 2015.

Why a service directory is a critical component of a compassionate community project.

In this blog, we will look at why a service directory is a critical component of a compassionate community project. We will cover

·     What is a service directory

·     How is it kept alive

·     How it can be used in clinical practice

·     How it can be used across organisational boundaries, including all 4 cogs of the new essentials

What is a service directory?

One of the key principles of community development is mapping the resources that are already available in the community. As Cormac Russell https://www.nurturedevelopment.org(@CormacRussell) repeatedly states ‘Start with what is strong and not what is wrong’. Communities already have significant existing resource. Mapping consists of going out into the community and making links to these resources. This is turn leads to building a directory of all of the diverse resources which can be made available to the public on a website. A great example of this can be found on the Health Connections Mendip website https://healthconnectionsmendip.org/mendip-directory/

A service directory is a living, breathing document which gathers together all that is going and available as community resource. The more that is on there, the more resource there is. It includes groups ranging from choirs to disease specific groups such as Parkinson’s Disease, services such as Citizens Advice Bureau, and anything else that might be considered relevant to help connect people together in the community. 

How is the service directory kept alive?

There are three key principles in keeping a service directory alive. 

The first principle is that the service directory has to be kept updated. The easiest way of doing this is that the community development workers are the people who do the updating. The system they have in place at Health Connections Mendip works well. There is always someone in the office to answer the phone. If someone in the community rings in to say that a group has changed in any way, one of the Health Connectors immediately changes the information on the Mendip Directory. This means that the directory is easy to alter. It also means that there are no intermediaries when trying to change it. There is no need for a ticket that goes in a queue which has to be completed by an IT department, perhaps happening 3 weeks later. If the directory is not up to date, the danger is that when somebody uses the information on there and it is inaccurate or out of date, then it will put people off using it. 

It is important to consider who does the updating. If this is done by someone who does not use the directory, it stands a chance of being yet another irritating administration task that gets put on the list and is done at the end of the day, or gets put off until another day. Accuracy and immediacy is likely to be improved if the person who does the updating is someone who uses it regularly.

The second key principle is that the service directory has to be designed so that it is easy for everyone to use. If the first thing you see is a sign-in page, this will put people off. Busy clinicians will not sign in if there are extra steps needed to access the directory. They already use multiple systems requiring sign in. Asking for more just discourages them. The design process must therefore include testing the directory with the people who use it. This should be done through face to face communication, getting feedback on design through testing cycles. Design has to make it as easy to use as possible, for public and professionals alike.

The third key principle is that the information about what is going on in the community must be local. If somebody opens up a service directory and sees groups that are going on miles away, they will not be interested and will not bother to scroll through lots of irrelevant information. I do not recommend using a search function to find what is happening locally. Again, this involves an extra step which puts people off using it. If you have a look at the Mendip Directory, you will see that you can find what you are looking for by scrolling through the headings. This is quick and easy. You are more likely to navigate your way through the multiple groups and services by browsing rather than searching. In addition, if you search and you do not find what you want, then you have to go back and do another search. This is a sure fired way of irritating busy people.

How the service directory can be used in clinical practice

A service directory plays a central role in linking community development with clinical care. 

A way of thinking about how this happens is to consider the impact of having easy access to the enormous variety of different things that are going on in communities. A service directory may have many hundreds of individual items on it. For example, in Frome there are over 400. When a community resource mapping took place in Penwith in Cornwall, there were over 700. Having this huge community resource at hand, it is possible to greatly expand the nature of discussions that clinicians will have with patients. If a clinician has nothing available and at hand when someone mentions that they are homeless, they are unlikely to progress with such a conversation and will shut it down. Alternatively, if a click of a button gives them a wide variety of options, there is something to discuss. See https://healthconnectionsmendip.org/category/housing/as an example of how this information might change the nature of a conversation about homelessness. A small point here – not being able to help people who are in need in a way that is meaningful to them is one of the most difficult and stressful situations a clinician may find themselves in. Seeing suffering without being able to help can make clinicians feel powerless.

Keeping the service directory open, ready to use, is the key to bringing its use into clinical practice when seeing a patient. If a clinician knows that they have a huge social resource at their fingertips, it becomes much safer to talk about a wider variety of problems. Clinicians who do this as a matter of routine find that the nature of their clinical conversations change. If someone is suffering from anxiety, loneliness or wants to lose weight, something useful is at hand. As the clinicians get used to the variety of resources on the service directory, they become more confidant in finding out what matters most to the patient. This can be very different from a discussion about the medical condition which seems to be the problem. If someone is suicidal from loneliness, they are not even remotely interested in what is happening with their diabetes. Addressing the loneliness is therefore much more important than thinking about their HBA1c levels. 

How a service directory can be used across organisational boundaries, including all 4 cogs of the new essentials

The big plus about having a service directory open to both public and professionals, is that it can be used in any setting.  We have described how this can be done by clinicians above. It is important to remember that this can be done by clinicians in hospital as well as in primary care. Making use of community resource in a busy Accident and Emergency Department can save time and give clinicians options that might avert an admission to hospital. Likewise, when considering what might be needed to help someone get home from hospital, linking to community resource can be extremely helpful. It might include befriending services for lonely people or volunteer transport to help people get home. Community peer support bereavement groups are something that can be really valuable to relatives who suffer a bereavement of their loved on during a hospital admission. They may not need specialist bereavement support but still want to find ways of accessing help. The use of the service directory is therefore relevant to communities and clinicians across all settings. 

Summary

 A service directory plays a central role in linking community resource to clinical practice in the wide variety of clinical settings. As we discussed in another blog, unless taking a compassionate community approach is something that changes clinical practice, face to face with patients and families, it will remain remote and distant for clinicians. In the previous blog I briefly discussed how it can be used in clinical practice and have used this blog to expand further how this can be done. In addition, I have discussed how the service directory is the repository for the huge range of support already available to communities and clinicians. 

Compassionate Community skills for clinicians

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. 

Summary

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.