A patient perspective: Telephone delivered cognitive behavioural therapy for people who suffer chronic pain

Our Telephoned-based Cognitive Behavioural Therapy (T-CBT) study has explored how telephone delivered CBT, which has been found to be effective for people with chronic widespread pain, could be provided in practice.  Val Derbyshire, Chair of Salford Fibromyalgia Support group, worked with the study research team to provide a patient perspective.  Here, Val describes that experience and offers her thoughts on T-CBT and the benefits its provision can bring to those suffering from chronic widespread pain….

Val Derbyshire with members of the Salford Fibromyalgia Support Group which she chairs.

In my work with the Salford Fibromyalgia Support Group, I meet many people who suffer from chronic pain and I have fibromyalgia too, so I know how difficult it can be to cope with the pain on a daily basis.  I was therefore delighted to be asked to have some involvement in the CLAHRC project on telephone delivered Cognitive Behavioural Therapy (CBT).

Pain in fibromyalgia is relentless and can be extremely debilitating. People often find that medical professionals simply do not understand the nature of their pain and prescribe ever increasing doses of pain killers, from paracetamol to opioid drugs like Tramadol and Morphine.  These drugs create a whole new set of problems and side-effects. Clearly this is unacceptable but people are so desperate that they will try almost anything to relieve their pain – I have come across many weird and wonderful ideas over the years.

That’s why it is so good to see that this form of CBT has been trialled; the fact that people can access therapy in their own home without the need to attend a hospital or community clinic, makes it a really good option and causes no inconvenience to those patients who are involved. Sometimes, people find it hard to attend hospital appointments as, unfortunately, fibromyalgia is so variable and unpredictable people often don’t know how they will feel from one day to another. To have a facility where ‘talking therapies’ can be accessed over the telephone is something which will be of great help to those people with severe pain who are sick and tired of drugs and their unwanted side-effects. Many people are confined to their home with overwhelming pain preventing them from living life as they would like to.

People who attend support group meetings tell us that the opportunity to discuss their problems and exchange experiences with others who understand is, in itself, therapeutic – which demonstrates the value of talking therapies.

I have enjoyed being a part of the CLAHRC group leading this work and hope that in some small way my contributions to the discussions have proved useful. In my opinion, it is really important to involve patients or ‘service-users’ in this way. It’s also encouraging that people are beginning to realise that patients could – and should – have some say in the development of appropriate health provision. Such involvement improves people’s sense of self-worth and, to some extent, legitimises their situation. When patients are actively participating in planning, and actually have a voice in the development of new or different forms of treatment they feel valued. It also breaks down barriers in communication with health professionals, as people sometimes feel intimidated when they encounter someone of Consultant status who determines what treatment they will receive – Feeling that things are done “to them” rather than “with them” makes people nervous!

The growth of patient participation groups and representation of patients in planning groups and meetings is very much a two-way process. They allow patients to have a say in treatment planning and, in turn, professionals develop a better understanding of patient needs.

At a time when health service budgets are being” cut to the bone” by a government who have little understanding of people’s health needs, it is really important that patients and health professionals work together to ensure that services are appropriate and accessible to all who need them in the face of such crippling financial restraints.

I have been privileged to participate in several projects with health professionals and will continue to do so whenever possible. I hope that many other patients may have the opportunity to participate in the planning and development of relevant health provision in the future.

A research summary for the telephone based CBT is now available to directly download here.