THE BLOG

People Not Patients

17/08/2015 22:31 BST | Updated 17/08/2016 10:59 BST

Sometime around the age of 10 or 11, I became repeatedly, intensively ill.

I was at first simply lethargic, then literally unable to move. I would be struck by panic attacks, leaving me so nervous that even the slightest anxiety could provoke nausea and vomiting. Just before my twelfth birthday, my ankles and wrists ballooned up, then my knees, then my elbows. My family had recently moved house and I had started at a new school and I knew nobody. I was the youngest; my mother, sister and brother all worked. For over a week I would walk the two miles to school alone, every day getting a little slower as my joints got a little bigger, acquiring lines and detentions for my tardiness and derision for my inability to catch a medicine ball without yelping.

One morning, confronted by an ankle the size of an angry pineapple, I walked myself to the doctors around the corner, taking almost an hour to cover the 500 yards. On arrival, I was rushed to hospital in an ambulance. So began the first of many, many long term stays in wards and treatment units. At the age of 21, I was finally correctly diagnosed with chronic Ankylosing Spondylitis, a degenerative disease of the spine that, due to the severity of my case, also affects my eyes, skin, bowel, heart and lungs. I was, to put it mildly, a very sickly child who turned into a very sickly adult.

Don't panic readers!

This is not a harrowing story a la Frank McCourt of my troubled life, just stick with me and we will make it to a happy ending. Somewhere along the way it will involve the 1977 number 2 hit "Come Back My Love".

My first stay in hospital, 10 weeks at the age of 12, was traumatic. Nobody knew what was wrong with me, and, this being the seventies, if they had known they wouldn't have told me anyway. I was the child patient. My Mother or my sister would visit every two or three days for the permitted hour long visit, and occasionally would impart the latest non-news from the doctors. In between their visits, unable to move, I would simply lie there dreading another blood test, injection, movement session, genuinely fearing that I could die and no-one would notice.

Around week five an occupational therapist came. I told her I was afraid, angry and frustrated and needed to smash something up. She arranged to have me wheeled down to the weekly basket making class, where my fat and bulging fingers would prove unable to match the dexterity skills of Mavis, aged 82.

When I emerged from hospital I was a very different person. I had been the star pupil (the top 1% of the top 1% in Kent, no less), but was now behind. I would get further behind from subsequent bouts of incarceration. Friendships circles had been formed of which I was not part; to this day I have only two 'childhood' friends who've endured and although, thanks to social media, I am now back in contact with some of my acquaintances from that time, their school photos and their recollections do not feature my appearance. My illness and the healthcare system had turned a gregarious and achieving 10-year-old into an angry 14-year-old truant sitting in a tree in the park.

Now you might think this is an odd way to publicly confront some childhood demons, but it's important to understand the motivations behind the work I've gone on to do with Rhythmix, and specifically the work of Jo White and her team who deliver our Wishing Well project.

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Wishing Well supports wellbeing in healthcare by bringing music directly to patients bedsides. It creates environments that make people feel safe and encourages a healthcare culture that helps staff interact with the person, as well as treating the health condition. The Wishing Well team support the whole community around the patient, including families, care givers and staff in interactions. They aim to improve the overall sound ecology of clinical spaces.

There's a huge amount of evidence emerging about the impact that music has on health, particularly in healthcare situations. Recent research from Queen Mary University of London published in the Lancet said that patients who had listened to music had been less anxious after their surgery and had needed less pain relief. A study at Great Ormond Street Hospital published by the Psychology of Music found that a significant decrease in heart rate and pain level were found at the end of the music session with children and young people.

But when I read the reports that Jo and her team send to me, I feel I know, personally, exactly what they've achieved, because I was the child who didn't get to experience the music and the joy and the happiness that they bring to hospital wards every day. When they say "improve the overall sound ecology of spaces", I can tell you first hand that those spaces are full of terrifying bleeps, panic alarms, urgent calls to this or that bed. The photos of their work show young people connected to their surroundings and their families and carers by music. Their hospital ward is not a terrifying place, it's a musical place. That's going to make a difference to that child not just today, or during the sessions, it's going to impact on how they integrate back into the world and help them to build their future. Wishing Well music in healthcare programme is about a fantastic and engaging musical experience, but it's also about self-confidence and self-worth, about feeling valued and appreciated.

It's about being a person, not a patient.

Janet Lee, Critical Care Practitioner at The Royal Alexandra Children's Hospital, Brighton commented:

"Music helps children let out big feelings sideways. You help us to see the child beyond the health condition."

The Independent on Sunday recently announced its "Happy List 2015" - the 100 People Who Make Britain a better place to live. Jo White and the team from Wishing Well were selected to be on that list this year. If it's about making a life changing difference to young people most in need, then from my own personal perspective it would be difficult to think of work that's more important and needed, or that has such incredible potential to provide a genuine moment in which a young person can be supported through a challenging experience and towards a positive outcome.

There is an entirely separate side story to my own chequered history, which is the key to how I ended up "making a success of my life" (whatever that is supposed to mean) despite my health challenges.

Around the time I first became ill, my sister took me to my first ever concert. It was at the Fairfield Halls, Croydon, and featured sorely over-looked rock 'n' roll revivalists Darts. Our seats were about halfway back from the stage, in a slightly raised tier. Darts, in case you don't know, featured a human force-of-nature by the name of Den Hegarty on bass vocals. Den's particular schtick was to run all around the stage, into audiences, over audiences, up walls. On the night in question, Den ran through the audience towards our seats, mounting the stairs in a single bound. He planted his face about six inches from mine, pulled his "I'm completely hatstand" bulging eyes look, and simply went "Ba-Ba-Boom-Ba-Ba".

I was an impressionable young lad; I immediately thought "I should do that for a living". A thought that stuck with me and shaped who I later became.

Music literally saved my life.

After I'd wiped Den Hegarty's spittle from my face, I started avidly consuming the NME, then records, then concerts. I joined a band, and formed friendships that have stayed with me throughout my life, those music friendships replacing the ones I lost somewhere in the healthcare system as a child. The first date I took my future wife on was a Gene and Divine Comedy concert. My children were listening to Radiohead live in the womb. To be absolutely clear about this, music is what I am and it's what I do.

Now I'm not suggesting that we should allow Den Hegarty to roam the wards of hospitals across the land randomly shouting "Ba-Ba-Boom-Ba-Ba" into the faces of passing patients to see if it helps any of them towards a life that is saved by music. Although that obviously is a fantastic idea, what Wishing Well is achieving is a little more subtle. But it's just as effective in giving young people relief from pain, from the fear of their surroundings, in connecting them to something exciting, invigorating, something that says "you're alive and you count".

The Wishing Well team recently started working in dementia units. The work is different, but the outcome is the same; people re-connected, joy, happiness, all the things the Independent on Sunday recognised when they picked Jo out and gave her the award.

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We're all going to be old, and statistics tell us that every single person reading this article will be touched by dementia in some way; either as a sufferer or as a carer to a family member. I'd like to see every dementia care unit in the country able to offer Wishing Well style programmes; we should be treating it as a quality of life issue, not a clinical matter. You could say it's self-interest to demand it - maybe I'm secretly hoping that the healthcare at the end of my life will be musical, joyful and happy in a way that my childhood wasn't. Government needs to take a serious look at the impact music is having; the recent announcement of an extra £200million to deal with the rising dementia issue is welcome, but we can achieve something that's real and positive to patients and their families and carers through music that simple medication won't achieve.

Lucy Frost, Dementia Specialist Nurse Dementia Champion, said recently:

"Having seen the Wishing Well Musicians in action I am convinced that this is the way forward in dementia care. Every ward needs this"

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If you'd like to help someone in healthcare get access to an incredible Wishing Well music programme, you can donate to support our work at www.wishingwellmusic.org.uk

Maybe you can help them turn their life around as well.