"I was invited to capture images which represented the horrendous pain I was feeling. The images were of decay, destruction and despair. I was once a functional, useful person who used to do loads of things and was now in pieces. It was upsetting but in a strange way it helped me manage my pain," she explains.
Her work with artist-in-residence Deborah Padfield is an example of the integrated approach offered to patients who seek help at the UK’s only specialist facial pain clinic at University College London Hospitals NHS Foundation Trust (UCLH).
The service is led by international expert Professor Joanna Zakrzewska who works with colleagues across the Trust hospitals including The Eastman Dental Hospital (EDH) the Hospital for Neurology and Neurosurgery (NHNN) and the Royal London Hospital for Integrated Medicine (RLHIM). Her post is part funded by the National Institute for Health Research (NIHR) Comprehensive Biomedical Research Centre (CBRC) based at UCLH and University College London (UCL).
Ms Aldous is one of hundreds of people who turn to the specialist team after years of misdiagnosis elsewhere. Although facial pain affects an estimated 7% of the population, many patients will seek help from a range of healthcare professionals including doctors and dentists who have little experience in this field and offer widely disparate care.
Initially she was told by her local dentist that a decaying tooth was the root of the problem. But after removing it, the pain worsened.
"The pain spread to my neck and my ears. Wind hurt my face, I couldn’t eat, swim, sing, work – do all the things I love. Imagine the very worst toothache, earache, neck pain every single day of your life. It makes me very depressed."
Her dentist referred her to the Eastman Dental Hospital, which transferred her to colleagues in the facial pain clinic. Ms Aldous said: "The clinic offers a very holistic approach, much more dynamic that you would normally expect. The different specialists are working together to try to find the right approach for me."
Liz captured images to represent her pain
As well focussing on managing her pain through the art project, known as face2face, individual sessions with the Trust’s psychiatrist and psychologist proved invaluable, as did meeting fellow sufferers in the pain management group where they learnt coping strategies.
"Some approaches work, some don’t – but they might for someone else! The pain hasn’t gone completely but I am noticing that I have more days when the pain is less severe. "
Pains such as Ms Aldous has developed need to be self managed not just by medications which at the most give 50% pain relief but by changing mood, negative thoughts and improving sleep.
Professor Zakrzewska, who studied medicine and dentistry, said: "We use our faces to express our emotions and to communicate with others. It is difficult to do this if the face is in pain.
"Pain is invisible and so subjective that it is sometimes impossible for patients to convey to others what they are suffering and what a profound effect it has on quality of life. Patients with chronic pain need to have time to tell their stories, to be listened to and to be given a plausible explanation for their pain. The face2face art project has been a really successful component of how we help patients manage their pain."
"For the majority of patients, the exact medical cause of their chronic pain remains a mystery for which there is no magical cure. Chronic pain needs to be managed using medical and psychological methods and we draw on the expertise of colleagues from the whole Trust to achieve a more holistic patient centred approach which is often the key when trying to manage pain."
Deenan Pillay, NIHR CBRC director, said: "It's great to see imaginative and innovative projects like this having such an effect on patient care. One of the purposes of the CBRC and the research it supports is to enable UCLH to offer the newest and most effective treatments for complex diseases, including cancer and neurological conditions and cardiovascular disease."
About the facial pain service:
- More than 100 patients from all over the UK are referred to the service each month. 800 new patients are seen each year, with 700 follow up cases
- Chronic facial pain is often misunderstood and misdiagnosed. Although it is estimated 7% of the population suffer from it, GPs may have little experience of dealing with it
- On average, patients have suffered pain for four years before being referred to the facial pain clinic at UCLH, with 60% having seen other specialists
- Referrals come from: dentists 45%, GPs 26%, specialists 27%.
- Of those attending the clinics only 8% of patients have a dental cause for their pain; 36% have muscle pain; 44% mixed chronic facial pains and up to 12% neurological pain.
- A quarter of patients have other chronic pain problems; 20% have depression or anxiety.
The face2face project aims to give visual form to the experiences of those with invisible facial pain. Pain is difficult to communicate whether to friends and relatives or to healthcare providers, This increases sufferers’ isolation and can lead to depression.
The project is a collaboration between artist Deborah Padfield, facial pain specialist Professor Joanna Zakrzewska and pain patients and clinicians at UCLH. Over 100 patients and clinicians have become involved. The project is piloting a pack of PAIN Cards offered as a potential valuable new communication tool for use in NHS pain clinics. Some of the works created during the project – including those of patient Liz Aldous will be exhibited at the UCLH Hospital Gallery (June 2011) and the Menier Gallery London (6 – 16 July 2011)
About the NIHR CBRC:
The National Institute for Health Research (NIHR) Comprehensive Biomedical Research Centre (CBRC) was established in 2007 and is at the forefront of research into some of the major causes of illness and disease-related death.
The centre is one of five funded by the NIHR and enables UCLH and UCL to train the next generation of top researchers.
The centre at UCLH/UCL has focused on a range of advances in medical research that will have a direct impact on patients' care and quality of life, and will also save many lives. These include cancer, cardiac disease, infectious disease, women's health, oral health and neurological diseases such as epilepsy, stroke and multiple sclerosis.
The CBRC has:
18 research themes; invested over £5m in new translational research projects; invested over £25m in staff, equipment and research facilities, including the Clinical Research Facility at UCH; funded 136 consultants and recently launched new Centre for Nurse and Midwife led research.
In addition to the CBRC, UCL is the only UK university hosting two NIHR Specialist Biomedical Research Centres, formed in partnership with Great Ormond Street Hospital for Children NHS Trust (GOSH) and Moorfields Eye Hospital NHS Foundation Trust.