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Patient Voices: Complex pain, complex teams

Complex pain, complex teams

University College London Hospital’s complex pain team works with patients who have persistent or chronic pain. Their aim is to improve people’s quality of life and manage pain, whether in hospital or transiting back to living at home.
As well as addressing patients’ needs, they also care for the professionals – the teams who are looking after those with chronic pain. Their collective stories demonstrate that whether we be patients, carers, healthcare workers, or a mixture of all three, we are each touched by pain and suffering, we are connected by each other’s willingness to listen, to attend to and to transform this experience.


Patients’ and carers’ stories

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This is Sue’s story.

They helped me…
Rachel is healthy, happy and active, until she has surgery to alleviate excessive monthly bleeding. There are complications, pain, more surgery, more complications, helplessness, humiliation and loss of confidence, of livelihood, of identity…. The Complex Pain Team offer knowledge, understanding, tools and techniques to help Rachel manage the pain, the incontinence and her expectations, allowing her to find her way back to herself and some of the things that give her joy.

A mother’s story
Jilly’s daughter, Emily, has everything going for her: she’s kind, clever and multi-talented. When she becomes ill with a range of unusual, complex, painful symptoms, life changes for the whole family, from care-free and fun-loving to worry and fear. Four years later, the Complex Pain Team at UCLH offers hope and understanding, tools and strategies, not just for Emily but for her whole family, enabling them all to live with her conditions and look ahead to the future.

An invisible illness
For many years, Emily’s illness was invisible, although it caused her great pain. In common with many teenagers, Emily’s identity was bound up in her appearance so you might think that a naso-gastric tube would have a negative impact…. But with the help of the Complex Pain Team, Emily is able not only to accept her illness but even embrace the totality of who she is.


Staff stories

Medicine with a smile
Natalia is a doctor, a doctor who questions the nature of medicine: is it art or science? When her husband is diagnosed with cancer, she ponders the nature of care and caring, living and loving, body and soul… and then she brings her own experiences to bear on the care of her patients.

Biology and being
Anna has always loved both art and biology, so when it came to choosing a career, she sought a way to bring the two together. Clinical psychology seemed to offer the possibility of aligning feelings, emotions and humanity with medicine… It’s been a long struggle but the Complex Pain Team has provided the right conditions to treat patients as people with hearts and minds as well as bodies.

How does your garden grow?
Growing up in Zambia, Natasha had plenty of opportunities to experiment with growing and making things. So when faced with the challenge of working with patients with complex pain, she had the courage and confidence to find and mix the right ingredients – people, skills, protocols and funding – to result in a successful approach to treating patients with long-term, complex pain.

Do superheroes exist?
As a psychologist, Katie sometimes feels ineffectual when working with patients suffering from severe, complex pain; in fact, it often feels as though she needs super powers to make a difference. A chance glimpse of a colleague exercising her own superpower of dancing helps Katie realise that perhaps everyone has a superpower, if they can just figure out what it is.

I am a nurse. I am a patient
As a child, Angie wanted to a nurse – someone who could flounce around talking to people. As a nurse, working with patients suffering from severe, debilitating pain, the reality is a bit different. When she becomes a patient, she gains valuable insights into what it’s like for some of her patients…. And recognises the value of listening.

Enough
In her private life, Jackie loves to sing and dance but it’s not always easy to know the right words or the correct steps in her professional life. How much is too much? How little is not enough? How can she truly be herself and also represent her colleagues, her gender, her race in order to ensure the best care for her patients?

One, two, three
Death can leave those left behind, however competent, feeling overwhelmed, unable to cope. Extreme pain can leave doctors, even those who specialise in the relief of pain, feeling useless. Brigitta reflects on the work of her multi-disciplinary team and their attempts to relieve the suffering of their patients.

Time to give
Coming from Columbia, Isis works as a Health Care Assistant before training to be a nurse, working with the Complex Pain Team at UCLH. Describing several experiences with patients, she illuminates her compassionate, kind approach to caring.

Rate and rhythm
‘Helping people’ is not the reason you are supposed to give for wanting to become a doctor. As an anaesthetist, Vicky gradually learns that there may be better ways to help people than saving their lives. But the management of complex pain requires a very different skill set from that of putting people to sleep….Once l earned, however, these ‘soft’ skills are a firm foundation for clinical practice.

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