Two right feet: My healthcare neglects we are social beings who take and give

Today I took some time off to put some thoughts on writing hoping to get some input from other professionals and human fellows starting with a simple question

Why we aren’t allowed to heal others when we become ‘patients’?

At a time when self care is at the top of the agenda for preventive health and for economic reasons it seems - in my opinion - we are still perpetuating the same old ideas of dependency instead of promoting interdependency by making us believe the incompatible choice between self care and care for others.

Empathy is not a linear path We truly accept from granted that only when we are in a position to receive and get then later we can give and share, instead of imagining a holistic cycle when both receiving care and caring for others would coexist. We need to look after ourselves and there are plenty of circumstances when our own health is the priority for obvious reasons. Like the America first slogan by Trump or Bolsonaro’s Brazil before everything, and God above all, we are worryingly getting used to a polarisation of the world seen and lived in opposition and antagonistic, exclusive terms. What sort of relationship we want to build in an overcrowded public health system unable to cope with service and demand? Why is so important to build quality time between doctors and patients?

Is it crowdsourced health an utopia?

Why is it so important to build real human connections and a voice for patients?

I was pleased to come across this article about how doctors diagnosed with cancer changed their views after becoming ‘one of them’. I am living and managing well Diabetes type 2 and cardiomyopathy and I am working towards making further choices on nutrition, diet and life style changes despite of the lack of co-operation from my nurse who insists on being on tablets for life.

Last October I was diagnosed with stage 2 prostate cancer informed by the urologist who added the word ‘ aggressive’ to his announcement which didn’t correspond with the real diagnosis and tests results. Really? I asked for the Gleason score to understand why and he gave me the report just because I asked for. In less than 10 min I was dispatched and put into hormonal treatment without any discussion about options etc.. At that time I wasn’t unaware of the European Bill of Cancer Patient’s rights.

I didn’t need unreasonable fear to make a choice, but plain information. The nurse standing up arms crossed in this tiny space didn’t help. It made me think of Mrs Thomas at primary school. What have I done wrong Miss?

Later on I had opportunity to experience the lack of empathy as a follow up, I mean real care as human quality as well as we proper communication between doctors across hospitals. (they forgot I have one body and one mind) Certain decision as risks factor where based on lack of evidence as later exposed by my cardiologist who following the results fo ECG and other test decided that I am fit for a surgery if I wanted. I changed hospital care and move to where my heart is seen every year with the idea of be treated under one roof. All this theory of integrated care was just that, a nice theory.

Eventually I am making my own informed decision about treatment with a team I trust. I have finally chosen one route based on the level of empathy, listening, explanation, evidence based, experience, attitude to make decisions quickly and a general sense of being cared of, not looking nice on paper but on face to face. So far I feel strong physically and emotionally.

For the last four years I have been developing Humming in Harmony, a novel practise of social and creative mindfulness based on the power of the human voice (humming) to connect with each other in order to build meaningful relationships and with ourselves as well as with the physical, natural and urban environment. It is an early stage model of care for mental health based on empathy building and the development of life long socio-emotional competences which hopefully with tested through research to proof the therapeutic value in the years to come, on its own or as a complementary support for quality of life. I am looking for validation via scientific research combining psychology of music cognition, neuroscience and acoustics in addition to collateral sociological research.

The user is at the centre of it all as co-creator of their own wellbeing with others regardless of the condition, language, age or any social barriers. It tackles the causes of mental distress such as social isolation and it is my vision to enable a reward system where royalties generated by the music sales via app and multi platform will be shared and used for reinvestment and R&D. At the moment I need to test the numbers and finding groups and organisation committed to a protocol of research in order to measure impact as my aim is to apply for a accelerator innovator fellowship in for public health and being able to implement it in the health system by decentralising the point of care outside clinical environments. I am not going to stop it because of my cancer diagnosis.

My plan is to being able to implement this practise within various social ecosystems by bringing it where people spend most of their time throughout their lives either studying, working, leisure or living such as schools (for teachers, parents and students) at the workplace (for managers, employees) at home (private, social housing, care homes..) or elsewhere where we enjoy our time such as retreats, sport centres, social clubs etc.. I am keen to test it as model for wellbeing concerts with a music performance based experiences like this improvised orchestral piece I composed HUM Home where the so called patient will be another unlabelled member of the audience.

How naive I was to offer my skills to introduce free humming mindfulness workshops at one of Maggie’s centres in London beautifully designed and built to support cancer patients, carers and friends with a welcome space and free activities to choose from. I was inspired by the architecture and the interior design. I wanted to being able to build up a group which could commit over a period of three months or so, so if I wanted to obtain voluntary feedback as opposed as being a drop in choice. I did not express myself from the position of power ( I have proof of its health value) but the authority (I have cancer and I know how it feels). The answer from the director was a simply 'no, it is in our policies'. ‘You can’t because you have cancer’ ‘You have to wait two years or so, but you can still come to the centre as an user’. The same applies to Mc Millan cancer support as they can’t accept volunteers with cancer to do any type of work they may want. What is wrong? I was surprised of such a response. Am I neglecting myself? No, I am taking good care of myself. Am I going to put myself at risk? Obviously not. I am determined to overcome cancer and heal with the support of a very caring team. Every person is different and would react differently to a potential life threatening condition but I wondered how many other people like me are prevented to share skills and to have a choice. What can be done?

If you can offer fresh viewpoints on this matter I would appreciate it. In the meantime I will continue to pursue my dreams and aspirations to build up a social enterprise, to test my work elsewhere by doing and acting, not just by thinking. If you can facilitate access to a group you may think will benefit from Humming Mindfulness I will be very happy. I decided to take a short break and travel to meet some old friends to celebrate my birthday in style, in Italy. I am happy to start further conversations and send you more information and maybe our paths will meet in the near future!

Empathy in Cancer Care I am keen to connect with other cancer patients working in the care for other professions in particular healthcare, educations, arts, personal development to form a peer to peer network based on mutual exchange. Feel free to download and share this open call flyer and share it. Read this comprehensive article showing in depth views of a nurse diagnosed with breast cancer

Sergio Lopez Figueroa, composer, pianist and social entrepreneur

• Email [email protected]
• Website (teaching) www.creativepiano.co.uk
• Facebook www.facebook.com/humminginharmony
• Tel +44 (0)7811458779

Reference articles

? https://php.nhs.uk/doctors-become-patients

? https://changemakersmagazine.org/hum-change-wish-see

I an 'walking my talk' by volunteering from April to July 2019 at this amazing healing retreat and community in Scotland www.helpyourcell.com so I need support during this time. One way of doing it is by visiting these online art galleries with my drawings and art work inspired by my experience before and during radiotherapy treatment.

Sergio's Art work https://society6.com/arthealing https://artpal.com/sergio

Humming testimonials video