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‘I’d love for my voice to be heard’

Alarna Simmons, assistant psychologist at Renovo Care, looks at the importance of reflective exercises with patients

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A lot of times in our day to day interactions with patients they share with us their worries and concerns.

We guide them through the rehabilitation process reassuring them and offering not just physical support but also emotional support as they come to terms with life changing experience.

But how often do we stop and really ask the patient to tell us their perspective in its entirety? I mean beyond the initial gathering of social history for context or the questions from various assessments.

I wanted to provide a patient with the opportunity to do just that. Not only does the interview below serve as a really good reflective exercise contributing to the patients’ goal, but it is also a means of their voice being heard.

I hope this encourages other staff who work with patients in rehab or another setting, and also to other patients who are at different points in their recovery journey, may it inspire you to keep going!

Can you tell me about how you were in the early stages of your diagnosis?

“I was really scared that I would be paralysed forever. I would always think ‘will I ever walk again?’.

“I was happy until I got ill. I felt really depressed and suicidal. I thought I won’t have much of a life if I am paralysed forever.

“Everyday my emotions were very up and down. Sometimes I would feel okay and other times I would be really depressed. It could change really quickly.

“At first, I was positive I would get better but then after a relapse I felt hopeless and it was hard to be positive after that. I used to be very anxious all the time, constantly in pain, and I did not trust people”. 

How are things for you now?

“Most of the time I wake up feeling positive and like I have a purpose but sometimes the negative thoughts come. I tell myself its not true and it’s good that I recognise it is happening now and I can stop it.

“When I achieve things especially in physio it makes the negative thoughts go away and I feel like I am stronger that I thought. I have learnt ways to be calm and now I feel like I can trust the people around me. I don’t care how long my recovery takes it will be worth it”.  

What are some of the things that have helped you mentally?

  • Relaxation has helped me to be much calmer, especially now my pain is under control
  • Being able to talk to staff about my feelings and not feel judged has helped me a lot
  • Positive affirmations that I say everyday like “I am good enough” “I am strong” “I am not useless” “I can do it” and “I believe in myself because I can get better” have helped to remind me every day. Sometimes I will repeat over and over “do it for [my son]” 
  • Being able to phone my mum helps me a lot. Before I used to self-harm but now, I can talk to my mum instead 
  • Seeing my own progress has helped me to believe in myself and makes me feel like I can get better. It also lets me know that the negative thoughts are not true. 

Based on the difference what would you say to your past self if you could?

“I would say to be patient and stop getting angry at yourself for not being able to do physio because you will be able to do it later when the pain is under control. Try to be more positive and stop thinking negative things like “I’m not going to get better” because its not true”. 

What inspires you?

“I feel inspired when staff tell me about previous patient who had the same condition as me and was doing really well when they left here. It lets me know that it is possible, and I hope me sharing this will help another person”. 

What do you hope for in the future?

“I hope that I can walk again. My favourite place is the beach, so I want to be able to go there with my son and nephews and play in the water.

“I want to be able to use my hands as well to feed myself. I want to be happy all the time and not get stuck on negative things. I know I might still have some negative thoughts (as everyone does) but I will be able to let them go by without them affecting me.

“I want to feel like a proper mum to my son again and do more things with my family like quality time”. 

What would you say to another patient?

“Keep going, and don’t give up, I never thought I would get this far”. 

What would you say to other therapists or hospital staff?

“It is important to know the patients’ condition, be understanding and patient with them. I also like staff who are motivating, encourage me and believe in me”. 

My hope is that if anyone else completes a reflective exercise with a patient that they will offer praise for not just the transparency but the bravery that comes with sharing their experience.

It is an absolute joy of mine to see the progress of our patients and conversations like the one above just reinforce the fact that as a team we are truly making a difference.

At Renovo Care, we place high importance on our values of person-centred working, effective teamwork, respect, dignity, integrity, open and honest communication, and providing an environment of learning and development for staff, patients and therapists alike. 

Encouraging our patients from the beginning to take one step and one day at a time and being with them for each of these steps, celebrating the highs and lows of the rehabilitation journey is an honour and the reason for waking up in the morning and going to work with a joyful heart. 

 

Insight

How housing design can improve quality of life

Richard Grota, director of Edward Architecture, discusses how design and adaptation of homes can be vital to physical and mental wellbeing

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Housing should be designed for all forms of disability. Some people who are regarded as disabled are in fact largely disabled by their environment and can become trapped in their own homes or spaces living a life restricted by poor design. 

It is critical that these people get the access to resources to give them a way of using their space that provides the very best quality of life.

In the UK, there are more than 13 million people living with a disability which comes in many guises such as physical, sensory and mental illnesses. It is becoming increasingly important to create architectural design that provides freedom of movement for all. 

Varied needs require a varied design solution which can be adapted to suit different physical restrictions. Architecture is all about human comfort and in the words of The Commission for Architecture and the Built Environment, ‘by improving the quality of buildings and spaces, this will have a lasting influence on the quality of people’s lives’.

Anyone who creates a custom-made property has the opportunity to really think about what they need from their home, both now and in the future, and to take all crucial and desired elements into account. 

For those who have a disability, the opportunity to adapt their house or create a new tailor-made dwelling could dramatically improve their daily life and bring families closer together. 

It can be an emotional process working with people and listening to how the things most people take for granted, such as interaction with their children, have become an impossible challenge due to the physical environment they are living in.

Designs need to support developers and the people that they serve, both for their physical and mental health, and there are so many ways to achieve this. Through thoughtful design and by working closely with people, we can get to the heart of the changes that would be life altering. 

Sometimes it is the smallest change that can make the biggest difference, for example, viewing the garden from someone’s bed, or the incorporation of a larger window to a small room and really listening to people when they explain how they want their space to function to accommodate the daily routines of themselves and their family members. 

Central living space is often key to enabling free movement around core areas and everyone will use their homes in different ways. For some, it’s all about being able to do meal and bath times with their children with ease. For others, the incorporation of sensory rooms is life-changing, and these can take all forms depending on what elements are important for the individual. 

Accessible design goes far beyond just making a home wheelchair-friendly, and there is a real stir in the market at the moment towards designing dwellings that can be stylish and modern. 

Flexible homes can be designed without knowing they are for a particular need and without compromise on style. A well-designed space with a specific practical purpose will enhance rather than inhibit design. 

The architect’s role is to design, specify and oversee building projects from inception through to completion, ensuring that schemes meet the needs of the individual and the recommendations and rehabilitation programmes made by their professional advisors. Designs must always have the full approval of the client, their occupational therapists, case managers, solicitors and all other relevant parties prior to works commencing, to ensure the completed works are exactly as requested. 

With the current climate, many people are spending more time in the home than ever, both as a result of the ongoing fears around COVID-19 and as a knock-on effect of the rise in working from home. 

Wellness as a concept has never been so important. A growing body of evidence is demonstrating how the design of buildings, streets, parks and neighbourhoods can support good physical and mental health, help reduce health inequalities and improve people’s wellbeing by building healthy experiences into people’s everyday lives. 

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Insight

The power of music

Ana Pessoa, a music therapist at Renovo Care Group, reflects on the life-changing impact of music

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“What does music mean to me?” was one of the first pieces of written reflection I produced when I trained to become a Music Therapist.

I revisited the document where I wrote about the significance of music in my life and career choices, and I realised I did not really deepened the concept of meaning per se (maybe I will not here either…). At the time I did not know better, psychodynamically speaking, or perhaps, I was just not ready to see the bigger picture but also the detail within it.

I did write about and reflected on my first “therapeutic” musical experience, one that I hold close to my heart. I had a very close friend, a grandmother figure, who often took me to the beach to play by the sea and to pick up shells. She shared the beauty and immensity of the sea with me as well as the way she perceived its myriad of sounds, scents and shades. In our outings she would sing a Portuguese traditional song that, little did I know, would be an everlasting bond between us.

O mar enrola na areia (The sea curls onto the sand)

Ninguém sabe o que ele diz (Nobody knows what it says)

Bate na areia e desmaia (Hits the sand and faints)

Porque se sente feliz (Because it [the sea] feels blissful)

Ana Pessoa

When, ten years later, she was diagnosed with Alzheimer’s disease, this song seemed to calm her down, even when she no longer had the ability to communicate verbally. Every time I gently sang the “sea song”, she would smile and sometimes drop a tear. To this day I wonder what she was feeling or remembering. I was 17 and it was the first time I truly understood the power of music.

“Our” song became a form of communication between us through the very last stage of the disease until she passed away. Aldridge states that “when the body is failing… the soul requires another form of contact” (Aldridge, 2001, p. 22) and that is exactly what music did for her. I will forever be grateful for having had the privilege of being the medium for that connection to happen, even though at the time I did not fully understand it.

I have recently lost a dear friend and musical mentor who played a big part in shaping who I am. Olga Prats was, without a doubt, my musical compass and, despite our age difference which did not really matter, Olga was my confidant of all things, a brilliantly generous pianist and, quite possibly, the biggest chamber music reference in Portugal. She was a skilled and tactful pianist with a fantastic ability to bring instruments together, letting each and every single one of them shine, but also support each other in a harmonious way. Olga’s piano playing was so present, so mindful that it was an experience in itself.

It was not until after her passing that I revisited the meaning of music: what does it mean to me, Ana the woman, Ana the pianist, Ana the therapist, and equality important, what does music mean to my patients. 

I have quickly realised that psychodynamic Music Therapy, one of the approaches I practice, is much like chamber music. If there is a lack of attention to detail in the parts, the whole simply does not work. I made the connection between therapy and chamber music because if I, as a therapist, do not treat a patient taking into account all aspects of their being and their lived experience, therapy will most likely not be effective.

There are patients that are not particularly fond of music, so providing music therapy without understanding, in the first place, why are they not fond of music is, arguably, a futile exercise. Therefore, similarly to what I would do if I were to play in a chamber music ensemble where I would read and play all the parts before the first rehearsal, I start by creating a safe space for the patient to express what they are feeling “now”, exploring as far back as they are willing to.

Working with an acquired brain injury population, these feelings often come in the form of frustration, sadness, despair, loss of identity and hopelessness. The process of learning the parts and matching them to a particular sound, timbre or rhythm are profoundly meaningful, both for the patient and for myself as their therapist. Comparably to the process of rehearsing different melodic and harmonic parts, each therapy session feels as though we are putting the pieces of a puzzle together, and, in a magnificent way, Olga’s teachings that were focused on three grand musical aspects, skill, meaning and sharing, permeate and live through the way I exist as a therapist and the way I see and perceive the meaning of music played in my sessions. 

I now realise how profound and complex this subject of musical meaning is. Although I still relate with the words I wrote on my first year of training, where music meant, and still means, devotion, care, survival, alliance, faith and freedom, joy and pleasure, generosity and love in their purest forms, I have also come to the realisation that music is the tool that allows patients to navigate through darkness, despair and their very personal “storms”. 

And, in a neurologic music therapy perspective, music is the key to light up the whole brain like a Christmas tree birthing new neuro pathways and creating the possibility of rewiring the injured brain. Music is a common ground for lifelong connections like that which I shared with Olga. 

So, thank you music for inspiring me in my naivety, for being there for me as I grew. Thank you for challenging me, and for making me question and reflect. Thank you for comforting me in difficult moments, for accompanying me in my success, thank you for giving my patients hope, and for framing lasting memories. 

Rest peacefully Olga, my forever “music mother”.

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Insight

The Myth of Perfectionism

Rachel Swanick, neurologic music therapist at Chroma, discusses understanding destructive perfectionism in children – and ourselves

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Constructive Perfectionism is positive. It is defined in Olympic athletes, world-class musicians, award-winning scientists.

However, perfectionism can be awash with pressure and expectation with no space for mistakes or flexibility. And when the fear of failure outweighs the want to succeed, the activity becomes detrimental to mental health. Destructive Perfectionism (DP) can be a perceived way to protect oneself from negative feelings.

For example, ‘If I do this task really well, I will be the best, everyone will like me and no one will be angry with me’.

In reality, the opposite can be true – by setting our standards at perfect, we are adding the potential for feelings of shame and judgment when things don’t go as we predicted. 

Then, we might turn our feelings back on ourselves (‘I didn’t do well because I am not good enough or trying hard enough’) when the circumstances might be out of our control. This way of thinking becomes addictive – instead of thinking, ‘never mind – I will leave it this time’, Destructive Perfectionism encourages us to believe we didn’t try hard enough and blame ourselves. 

Destructive Perfectionism can harm success, as at the root of perfectionism is the need to earn approval. Instead of ‘being’ and feeling comfortable in one’s own skin, the internal mantra for the perfectionist becomes, ‘I am what I achieve and how well I achieve it’. 

Many people who experience Destructive Perfectionism experience depression, anxiety, self-harm, body issues and chronic fatigue conditions, too. 

As many as two in every five children will experience DP.[1] Having such a prevalence of DP in society does not mean that more are achieving well but that we are becoming a “sadder society…. Undermining our potential”.

As perfectionism becomes a set way of thinking for someone, his or her resilience will often suffer. This is the irony of perfectionism: those who experience the highest levels of it often do not achieve and thrive. 

Looking at those with Constructive Perfectionism – sports people, for example, they will have failed many times and built up their emotional resilience through problem solving and creativity. Their resilience then becomes something they can transfer in to other areas of their life – high emotional resilience = high life satisfaction. 

The perfectionist will be sensitive to criticism, feeling ‘every bump in the road’. They may not be able to think outside of the box and therefore creative problem solving will not come easy. They will keep doing what they have always unthinkingly done, and in return, get similar results.

Furthermore, that internal critical voice that is characteristic of Destructive Perfectionism will hinder development, having the opposite effect that the perfectionist wants and needs.

So, what can we do for our children and ourselves to stop this pattern?

  • Concentrate on Good Enough

Good enough is not bad and it is not perfect. It is all things and sits happily in the middle of expectations. Doing your homework and you have to cross out a mistake? Good Enough! 

  • Say Thank You

A Gratitude Journal really works. This is a good (enough!) thing for children and adults alike. Each day, think of three good things that you did. Write them down, say them aloud or pop them on a note in a jar for another day. Concentrating on what went well that day shifts the negative mindset. The more this is done, the more habit-forming it is, so positive events will become our way of thinking.

  • Remember – Time off is not time wasted

By giving your child ‘free time’ to let their minds wander, you are taking off the pressure of achieving and comparisons and helping them develop ways to be creative and independent. Being bored can be a wonderful thing forcing them into daydreaming, snoozing or coming up with something different to do.

Children will also internalise the ways in which their parents relax which breaks the perfectionist loop and starts to build a new resilience loop – so parents, be a role model and get relaxing!

  • Trust that the task will get done

In most cases, your child will have some experience of successfully completing a task – no matter how small. Knowing inside that we have the skills and the capacity to complete tasks can be half of the battle to starting one.

If your child becomes overwhelmed at the thought of a task, gently remind them of a time when they did complete something. Remember together how good that felt and how much better they felt afterwards.

For children stuck at this stage, it can be hard for them to internalise the good memories and feelings as that negative perfectionist cycle has taken over.

Help them to change this by having photos or a picture of them doing their homework, or bring them into the present moment as they are completing something by saying, “Hold on to this feeling for next time – let’s remember this together”. 

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