Giving disabled children the chance to take control: A mentee’s reflections

Our Musicians

We had a visit recently from the amazing, Sophie Partridge who is an actor, writer and workshop artist. She is currently taking part in a mentoring programme with Drake Music and her mentor is the equally amazing, Graham Dowdall who also works with us here at Rhythmix.

As part of the mentor programme, Sophie got in touch to ask us if she could come and see Graham working on our project at Chailey Clinical Services in East Sussex. This project is part of our Youth Music funded Wishing Well programme which takes participatory music making into healthcare settings across the county.  Chailey Clinical Service is a residential ward for young people with very complex health needs and disabilities. We were delighted to welcome Sophie to the project; here are her reflections (we have changed the names of the participants)


As part of my mentoring with Drake Music, I asked my mentor, Graham Dowdall if it would be possible for me to observe his sessions at Chailey Clinical.  Graham’s sessions involved him working 1 to 1 with a small group of disabled young people, who varied as much in age as impairment but other than that, I wasn’t sure what to expect.  That label of `profound & multiple disabilities’!

If I had a preconception about attendees of such a session at Chailey, it was that these would be disabled people who, with the best will in the world, are done “to” and  “for”.  Through working with Graham, I knew that the aim of the session was to provide an opportunity for people to do for themselves and that can only be a good thing.  When Ben woke up, his Support Worker said “Bet you’re wondering why you’re not in bed!” (with that cold I would have wanted to be!).

Our Musicians

This for me, this seemed an indication of how little control Ben and Jack have over their lives.  To be able to exert any influence at all over their environment and activities, even if `only’ activating sound through an app, is therefore  important.  It is a “can” amongst the “cant’s” of a disabled person’s experience. I have no problem with all the “cant’s” in my life but I very much value my “cans” and have a feeling so do Ben and Jack.  They asserted themselves in the session and through their own actions. It takes communication, trust and time between all those involved; Ben and Jack, Graham as `facilitator’ and the support workers to achieve that.

Both Ben and Jack, with what I felt to be considerable effort on both their parts, activated soundscapes through minimal hand movements across iPad screens.  Although unable to hold the more ‘traditional’ instruments, Graham used them to accompany their iPad soundscapes and music was made.

At the beginning of the session, it seemed we wouldn’t take up the allotted 2 hours as there were only 2 participants but even with the health challenges encountered, challenges that are everyday occurrences for both young men and those who support them, we reached the end of that time easily.

I enjoyed the session.  I think Graham, Ben and Jack and those that supported them did too.  When people are nonverbal, enjoyment and satisfaction are expressed differently; eye contact, hand gesture and a smile of recognition and appreciation of someone’s presence with joint effort to access music, say just as much as words.  And being able to initiate sounds & music of your own choosing!  No one need be powerless or without control, devoid of pleasure or expression what-ever their needs are.  I just hope Ben and Jack  have these opportunities increased.


Sophie’s observations really get to the heart of Graham’s work at Chailey. This is patient, frankly quite tricky work and Graham has devoted hours and hours into a building a relationship with these young men that enables them to be creative in their own way and that allows Graham to recognise the subtle signs of engagement, experimentation and creativity. Ben and Jack are full time residents at Chailey and their opportunities to engage with people, things and ideas from the “outside world” are more limited than any of us can really understand.

But once a week, Graham arrives. Graham is a community music legend who is responsible for training most of our team here at Rhythmix, myself included (he likes to remind me that I wasn’t the best student back in the day.) His commitment to finding a way to make music with Ben and Jack is extraordinary and he does it in a way that is completely appropriate to their musical tastes. It’s a bit uncomfortable to talk gender sometimes but it’s been important for these young men to have a male figure in their lives. The staff at Chailey told us a long while back that they are surrounded by female carers, nurses and support workers. They have no other men in their lives; let alone one with whom they could make a bit of dubstep.

Our huge thanks to Sophie for visiting our work and sharing her thoughts with us. You can find out more about her work here: http://sophiepartridge.co.uk


 

Jo White

Programme Director for Wishing Well

Rhythmix

 

A Paramedic’s Perspective

For one reason or another, I got to spend a little bit of time recently  in an ambulance with a paramedic from my local hospital.

I talked about how making music can help to reduce the boredom and anxiety experienced by children who spend long weeks and months in hospital and how the sound ecology of hospital wards can have a very negative impact on young people. I told him about some of the older people that we work with who are living with dementia; people who can’t remember who their own daughters are but who can sing along to every line of “Fly me to the Moon”.

I expected a bit of cynicism back or maybe a polite nod, but the Paramedic grinned and handed me his iPod. It was loaded with songs from the 1930s, 40s and 50s.

He said that he assessed a lot of older people in his job and that a lot of those older people were living with dementia and got understandably anxious about the journey to hospital. So he rigged up a speaker system in the back of the ambulance. He plugs in his iPod and plays music that he thinks might be familiar to the people he meets. He said it is just incredible how much it reduces their anxiety.  He’s a musician himself and likes to sing along. The music gives him something to chat about; it creates a connection.

I am so often struck by how many professionals I meet in the NHS who completely get why music is so important to the people they look after and who can articulate the benefits of either listening to or taking part in music far better than I can. And while proper evaluation and research is vital, in my experience, healthcare professionals do not doubt what they see with their own eyes. They absolutely know what a child experiencing the joy of music looks like. I am reminded by this meeting of how much we have learned as an organisation from healthcare professionals who seek to care for, as well as cure; who see the child beyond the health condition and who understand the place of music alongside clinical interventions.

3 years on I am still blown away by this statement made by Dr. Kamal Patel one of our “champion” Consultants at The Royal Alexandra Children’s Hospital.

“There is no medicine that I can give a child, that makes them light up the way that music does. Music…helps me be a better therapeutic agent for the children I look after”

As we drove along, the inevitable questions were asked about what I do for a living and I told him about “Wishing Well”, the Music in Healthcare programme I manage for Rhythmix.

Last year we were asked by the Brighton and Sussex Medical School to run an optional Music in Healthcare module for student Doctors as part of their third year studies. The eight-week module enabled the students to tap into their own musicality and to use this to create interactions with children in the High Dependency Unit at The Royal Alex. I was impressed by the students. They clearly grasped the skills needed to make music with very poorly children and could see how these same skills would help them be better Doctors. Skills like sensitivity, trust building, creative thinking, team work, self-reflection, mirroring and observation.

One student’s comment particularly struck me:

“I have finished my Paediatric medical training but no one has taught me how relate to children. I am in my early twenties, I don’t have any younger siblings, nieces or nephews. I have never actually picked up a baby. This course has given me a way to build trust and rapport with children and I feel much more confident for it.”

This year we are running our Music in Healthcare module again. Working with student-doctors gives us an opportunity to demonstrate how Musicians can be used as a resource in acute hospital settings, to advocate to a wider audience and hopefully to broaden students perceptions of how they can help their future patients in a wider, more holistic sense. They may end up working on a ward with a participatory Music in Healthcare programme where they can support the integration of music into the daily life on the ward. They may incorporate simple techniques and ideas into their own practice, using simple songs or percussion games to build trust or to distract an anxious child. Like the Paramedic who bothered to think about how he could use music to reduce anxiety. He didn’t need to run a clinical trial or raise thousands of pounds to do this. He loaded an iPod and bought the right lead with him to work.

Towards the end of our journey, as we approached the Hospital, the Paramedic said to me “There is no culture on earth that doesn’t make music. Its universal. I don’t understand why music isn’t integrated into hospital care”.

I thought “That sounds familiar” and said “No, me neither”