Undergraduate project on Maggie’s Centres in Scotland – by Lorraine Manley

Recently I had an opportunity to spend time at some of the Maggie’s Centres throughout Scotland.   This formed part of a Medical Humanities project during the third year of my degree in Medicine.  As we know, an aim is always a good place to start and I set out to learn about the philosophy, development and core principles of care at Maggie’s Centres.  However, I soon realised that achieving this aim was only a first step on a path of deep insights and a rich learning experience.

“This is the great error of our day in the treatment of the human body:  that physicians separate the soul from the body”. Plato

Learning about Maggie’s

Before I started, I had thought that I had a fair idea of what Maggie’s is all about. I had visited one of the centres as part of my previous job in the NHS.  Looking back, I had barely skimmed the surface! My time at the centres over the six weeks of the project allowed me to see the depth of what goes on at Maggie’s.  From spending time with the teams, I learned about and experienced what healing actually is.

What I had not expected, was that it was also to open up a space within me to reflect on what was going on at a deeper level.  It was a breath of fresh air to be at Maggie’s.

It has helped further shape how I am as a person, and will hopefully shape the doctor that I will be in the future.  Here I hope that I can share some of my experience and my learning.

Maggie’s Glasgow

Context

On a November day in 1996, the first Maggie’s centre opened in Edinburgh. The opening of the centre was the culmination of the work of Maggie Keswick Jencks, her husband Charles Jencks together with members of the Western General Hospital oncology team.  The aim of the centre was to provide psychosocial care to people affected by cancer alongside medical treatment.  The centre would become known as Maggie’s Cancer Caring Centre and today there are seventeen Maggie’s centres in the UK, online and abroad, providing free information, psychological and emotional support, and practical advice for anyone that has been affected by cancer.

Inspiration for Maggie’s:  The first cancer community of its kind, the Wellness Community in California was an inspiration for the Maggie’s Centres. Today, renamed the Cancer Support Community, it continues to influence the work at Maggie’s and both communities continue to collaborate together.

Who visits Maggie’s?

It is explained by Laura Lee (Chief Executive of the Maggie’s Centres) in The Architecture of Hope (2010), that Maggie had strong views that support should reach out to family and friends. Thus, Maggie’s centres support anyone who is affected by cancer at any stage in their experience. Support is there for people with clinically significant levels of psychological distress to those who wish to bolster their means of coping with stress and distress.

On arriving at Maggie’s

Maggie’s is calm and cosy, and the atmosphere is remarkably consistent regardless of which centre you are in. It is summed up nicely by one lady as being “like a cuddle”.  People are met in Maggie’s as you would if you called into a friend’s house. There is a warm welcome and a cup of tea offered, immediately the offering of a cup of tea exudes warmth and kindness. It made me think of my own upbringing in Ireland and I began to draw parallels with the Irish culture and how we show another person that we care. Making someone a cup of tea creates a feeling of being welcomed in someone’s home and helps the person relax.  As you can imagine, being Irish I was indeed delighted with the greeting of a cup of tea!

At Maggie’s there no reception desk, or in fact any administrative feel. Maggie’s strips this away and sets up a home from home for those visiting. Once inside a Maggie’s centre, there are no signs on the doors or long corridors to be found. The teams explain how the lack of signage serves as a reminder to treat people as you would guests in your own home, for example, you would show a guest where to find the toilet rather than leaving the person to find a sign on a door. The environment cultures an awareness for other people, thereby helping those at Maggie’s extend the kindness that is felt there.

People choose to go to Maggie’s and can attend for as long as is needed.  As one of the Clinical Psychologists puts it,  we need to question what would we expect from our two year old self or four year old self,  in recognising the level of adaptation when faced with the emotional adjustment of any significant life change. There is recognition that coping is not “black and white, not on or off”.

The team

The people who work at Maggie’s stand out and stay with you. They have a presence and create an atmosphere of calm that permeates through the centre. Yet, they give a sense of safety and sturdiness with evident skills in tuning into people. Their level of expertise however is not overt when you walk into Maggie’s. What is so gentle is scaffolded by experts in the field of cancer care. The calibre of the team members and their interpersonal skills stand out once you engage in conversation, you trust that you are in good hands.

Importantly, the teams are aware that they cannot be all things to all people. Signposting to other agencies may be appropriate depending on what is affecting an individual’s well-being.  They will co-work with other agencies and health professionals to care for the whole person.

The language used at Maggie’s is clearly different from that in the hospital environment also. In discussing their care of people, there is no mention of “patient” or “client”. This really stood out to me; it takes away the power dynamic between people we see in healthcare and the roles that people adopt. In Maggie’s, people are met as equals.

What is happening at Maggie’s?

In trying to harness what makes up the elements of care at Maggie’s, I found myself continually trying to refer back to the publications behind what is being done at Maggie’s.  The teams thankfully were patient and understanding of this, I suppose it was fitting of my stereotypical student role! After the first week of my time at Maggie’s however, I began to feel the rigidity of my thinking lift. I recognised the person behind this. I have been here before when what matters in life really comes to the fore and there is clarity of thought. It is as if Maggie’s helps lift the pressure of life off.  This shift was just a lighter example of how Maggie’s can help transform how you feel and how you see the world. We can be weighed down by different life pressures, and of course all relative, but being at Maggie’s helps you see what is important and how you have the choice to make changes and to think differently.

Maggie’s offers a structured means of supporting those who are affected by cancer. Importantly, the components of the Maggie’s programme are based on what is known to be effective in meeting the needs of those affected by cancer and the integrity of the programme is maintained throughout each centre. However Maggie’s does appear to have the fluidity to keeping things human.  There seems to be a sense that if it makes someone feel better, it is worth trying out.

The four areas core to programme are; Information, Emotional and Psychological Support, Stress and Distress Management, and Support in Making Choices to Live Differently.   The experience of Maggie’s is more however than each of these alone, it would seem that “the whole is greater than the sum of its parts”. It is about being human, the body, mind, soul and spirit, and the work at Maggie’s emulates the essence of holistic care.

Furthermore, Maggie’s does all this in a home-like environment. The architecture of the centres is a key aspect of the value that Maggie’s places on those who visit.

Healing and Maggie’s

From my time at Maggie’s and speaking with the teams, it seems that Maggie’s is about healing and about helping people feel whole.  Healing is described by Balfour Mount and Michael Kearney in the paper Healing and palliative care: charting our way forward (2003), as the movement toward a sense of integrity and wholeness where the locus of control is within the person. The Asklepian approach as discussed in this publication, in which this process of healing is facilitated by a health professional, can be seen at Maggie’s. This is in comparison to the Hippocratic approach of curing where change is actioned by the health professional. Michael Lerner made the important distinction between curing and healing in Choices in healing: integrating the best of conventional and complementary approaches to cancer (1994). The aim of the doctor is to cure whereas healing comes from within us and takes place at physical, emotional, mental and spiritual levels. When we observe Maggie’s in action, we see that they offer refuge and guidance to people through this journey of healing while working in synergy with the hospital teams who aim to bring about cure. There is clear recognition at Maggie’s that it is the person that makes this journey of healing as outlined by Tom Hutchinson in Whole Person Care (2011), and the teams aim to facilitate this.

The path of healing with Maggie’s is very much experiential. One gentleman in a Maggie’s Centre  online video  (Maggie’s Centres, 2010) sums it up beautifully  “ where I think Maggie’s was great, was taking the emotional side of me, the spiritual side of me… and bringing that together with the science  of what was happening to my body, I felt as if I had come together at Maggie’s”.  Maggie’s helps people heal and their care supports each part of the process of emotional, physical, mental and spiritual healing.

The programme of support paints us a picture of how Maggie’s journeys through these aspects of healing with people. Emotional and psychological support weaves throughout the programme.  Psychological support ranges in levels from compassionate communication, individual psychology interventions and group support.  The opportunity to meet people in a similar situation is at the heart of Maggie’s and it helps in normalising experiences. The effectiveness of mindfulness cognitive therapy is recognised and is offered alongside cognitive behaviour therapy in developing skills to support long term life changes.

Tai Chi, Yoga, Stress Management and Relaxation sessions are offered integrating physical, spiritual and emotional healing. Maggie’s also recognises the evidence base for the effect of nutrition and physical activity during cancer treatment and in improving health and well-being.

Maggie’s are in the unique position of listening to what is affecting the person during their hospital treatment at their own pace without time pressures. People are supported in understanding the information they have been giving by their medical team and in planning ahead questions they may wish to ask their team.

Creative writing and journaling groups form part of the programme offered, and allow for expression of feelings through writing that might otherwise be difficult to put into spoken words. Expressive art workshops are another means for people to relate to their thoughts, feelings and concerns.

Overall, spirituality appears to be is the essence of the Maggie’s community. It is the coming together of people to help face an existential crisis and in discovering this new self within their soul by different means.  Voices rung out from Maggie’s Glasgow in the run up to the Christmas concert; it was joyful to hear this energy from those safely nestled within the trees in the still darkness of a November evening.

Maggie’s Glasgow

Maggie’s Centres – Healing places

Maggie’s is a healing place and its environment cocoons the care within. The first step into Maggie’s is recognised as an anxious and vulnerable time. The architecture of Maggie’s is there to send a very clear message to that vulnerable person that they matter. There is an immediate sense of feeling more relaxed when in a Maggie’s centre; the building almost tells you to make yourself at home.

How will Maggie’s help shape my path as a future doctor?

In an inspirational conversation I had with Mary*, one of the Cancer Support Specialists at Maggie’s, we talked about what really matters in the caring for people. She spoke of simply being there as a human being and spirit with others, and how care needs to be authentic and to reach the heart. It remains with me when a member of the pastoral care team comforted me in the last days of my mother’s life. My mother had been diagnosed with kidney cancer three weeks earlier.  I knew she got what I was going through when she said “your heart is sore”. And it was, her words helped me understand how emotional pain was manifesting as physical pain. The experience of loss for me has changed my perspective in life. It is these life experiences once travelled that can then go on to help others in the same situation and I hope I can offer this in my work as a doctor.  I often reflect on how I felt drawn to the vocation of being a doctor and being there to serve others, showing those seeking help that they matter to me.

Interestingly, I discussed with Mary about doctors showing that they are human and the question of showing vulnerability. A lady, I met recently, who had lost her husband spoke of how doctors need to “think with heart, not just cerebrally…leave the ego at the door”.  My experience at Maggie’s has taught me the essence of what care is.   Yes, people need to have faith in their doctors that they are sharp and highly skilled however human touch and kindness needs to go hand in hand with that.

“The practice of medicine is an art, not a trade; a calling, not a business; a calling in your heart that will be exercised equally with your head.” William Osler

Conclusion

At the kitchen table at Maggie’s, a lady describes the “altogether-ness” of Maggie’s. And this sums up what Maggie’s offers, whole person care that is felt and experienced. One only has to listen to those attending Maggie’s to learn of how it helps people. The lady goes on to say that she asked her doctor has he been to Maggie’s, to which he replied “I only have to look and talk to you to see the benefits of Maggie’s”.   On a wider level, the work of Maggie’s in helping people affected by cancer is recognised in the Department of Health (2007), Cancer Reform Strategy.  It touches on the key aspect of how Maggie’s “are places for people to be themselves, not a hospital patient”. The work of Maggie’s in survivorship care and in helping people build a life beyond cancer has also been commended by the National Cancer Survivorship Initiative (2013).

To me,   Maggie’s epitomises care. It comes down how we extend kindness within our cultures; how we show that we care. As I’ve mentioned earlier, in Irish culture you can’t go too long in your neighbour’s house before the kettle is on. These cultural parallels and being at Maggie’s has shown me that the essence of care is being kind and being human, it is the reaching out to another in their moment of need. It is said at Maggie’s that the aim is for the building “to make you feel, as Maggie made you feel when you spent time with her, more buoyant, more optimistic”.  If my care as a doctor can help others feel like this, my time at Maggie’s will have been well spent.

Footnote: *Name has been changed to protect privacy.

Lorraine Manley is a 3rd Year Medical Student at Aberdeen University, Scotland. Email:lorraine.manley.12@aberdeen.ac.uk

Acknowledgments

Sincere thanks to Professor David Clark, University of Glasgow, for his help and guidance throughout this project.

Thank you to the Maggie’s teams in Aberdeen, Dundee, Edinburgh, Fife and Glasgow who so generously gave their time in helping this project to be carried out.

References

Department of Health (2007).  Cancer Reform Strategy. [Online]. Available at: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081006  [Accessed: 10th November 2014].

Hutchinson, T.A. (2011). Whole Person Care. A New Paradigm for the 21st Century. Springer, New York.
Lee, L. (2010). Building a Life Beyond Cancer in Jencks, C.,  Heathcote, E., The Architecture of Hope – Maggie’s Cancer Caring Centres, Frances Lincoln, London.

Lerner, M. (1994). Choices in healing : integrating the best of conventional and complementary approaches to cancer. [Online] MIT Press. Available at: http://www.commonweal.org/choices-in-healing/ [Accessed: 10th November 2014].

Maggie’s Centres (2010). Thoughts on Maggie’s (Maggie’s Edinburgh).[Online]. Available at: https://www.youtube.com/watch?v=BssxhJQB-Ic&index=5&list=PL717189D50159E297 [Accessed: 13th November 2014].

Mount, B., Kearney, M. (2003). Healing and palliative care: charting our way forward. Palliative Medicine. 17:657-658.

National Cancer Survivorship Initiative (2013). Living with and beyond cancer: Taking Action to Improve Outcomes. [Online]. Available from: http://www.ncsi.org.uk/wp-content/uploads/Living-with-and-beyond-2013.pdf [Accessed: 10th November 2014].