Published 24 July 2009, doi:10.1136/bmj.b2786
Cite this as: BMJ 2009;339:b2786

Practice

A Patient’s Journey

Persistent pain

Mary Ray, patient, Joan Hester, consultant in pain medicine1

1 King’s College Hospital, London SE5 9RS

Correspondence to: J Hester Joan.hester{at}kch.nhs.uk

This patient describes the strategies she has developed for coping with her persistent pain from longstanding pancreatitis

In his annual report, published in March this year, Professor Sir Liam Donaldson, the UK government’s principal medical adviser, noted that almost eight million Britons have persistent chronic pain, which can prevent them working and ruin the quality of their lives. And yet, he said, because the UK has only one pain management specialist for every 250 000 citizens, only one in seven people with persistent pain ever sees a specialist.

I’ve had chronic pancreatitis for over 12 years. I wasn’t your typical pancreatitis patient: I wasn’t male or in my 70s, and I hadn’t misused alcohol. I’m one of a third of people for whom the cause is unknown. Quite simply, it’s a pig: persistent pain, tiredness, and frequent diarrhoea. And it disrupts your life. I kept working for over two years, but I was going downhill rapidly and I reluctantly had to take early retirement.

Part of coping with persistent pain is to give it as little airtime as possible: talking about it doesn’t win friends and influence people. So it’s strange to be writing this, but it’s a chance to raise the profile of persistent pain and pain management.

Diagnosis

I was told the pain would probably be with me for ever when the pancreatitis was diagnosed after months of tests. I was already learning to live with it. Over the following months acceptance and coping got harder as I was assessed for whether a pancreatectomy might stop the pain. I saw three consultants (in gastroenterology, diabetes, and pancreatic surgery), who outlined the benefits and risks. It wasn’t the right answer for me but it highlights a common dilemma: a chance to be free of pain sets you hoping and decisions about major intrusive procedures become an emotional roller coaster.

Referral to a pain clinic

I’m a psychologist so I was already using ways of managing pain: relaxation, goal setting, staying positive. I was referred to a pain clinic to see if I could improve what I was already doing. This was about 10 years ago and services have moved on, but there are still lessons to be learnt even now, and the learning process is continuous. Every patient had months of waiting to see a pain consultant, before being referred via another waiting list to see a psychologist, then a third wait for group sessions to learn a few basic ways to manage pain. Three waiting lists before learning useful strategies such as relaxation and positive thinking.

It didn’t make sense. Why wait so long to talk to people about understanding pain and simple ways to cope with it? All that time for a downward spiral with patients off work, with bouts of depression, repeated clinic attendance, increased use and side effects of painkillers, frustration with NHS staff, and ultimately referral to an intensive pain management programme.

Coping with persistent pain effectively depends on patients understanding and managing their pain. And they need to begin at the start of their "patient journey" not at the end. People need a positive message: you can make a huge difference yourself and here are some of the ways you can do it. Ways of managing pain can be easily taught using everyday language. If people don’t need simple pointers about relaxation or pacing—because they improve or there’s an effective treatment—nothing is wasted. But meanwhile, it can open people’s minds, help prevent that downward spiral, and set positive habits for later if that proves necessary. And offering ways to manage pain early is cost effective because it minimises the personal and economic costs of long term disability, unemployment, or mental health problems.

Pain management is a kind of curriculum: understanding pain; acceptance and positive thinking; relaxation and managing stress; pacing; managing medication; and safe ways to stay active. To improve access and reduce costs, the pain management advice can be delivered by nurses and physiotherapists in either primary or secondary care, with some input from past patients who are managing their pain effectively. Health visitors and nurses already support people with long term conditions; they can be at the heart of delivering pain management.

It may be better to offer ways to manage pain without the psychology label. People can sometimes react to the word "psychology" with resistance or distrust or be concerned that they may be seen as having a mental health problem rather than physical pain. They may feel more open to self help in nurse led or patient led groups than to a consultation with a psychologist, and they may be happy also to see physiotherapists for advice on safe exercise. Psychologists could then train facilitators and see patients with more intractable problems.

A patient centred approach doesn’t undermine the clinical route. Diagnosis is still crucial, and specific treatments can still make a difference. But working in partnership right from the start with patients who take control of their own care makes things easier for clinical staff too. Then by the time a patient sees a pain consultant he or she will be informed and involved and may have more realistic expectations—especially if a "cure" may not be possible.

Things that help

As a patient
Lots of things make a difference to coping with persistent pain: relationships, personality, attitude to change, staying active and involved, income, and realistic expectations. I see it as a kind of luck that I’m a determined person as it helps me stay positive and build things into my life that I used to get from work: a sense of purpose and belonging; making a contribution; contact with like minded people. My income is dramatically reduced but we can manage. And my partner, Tony, has been there with the difficult job of being alongside me, being kind, and not fussing when underneath he’s worried.

Persistent pain does disrupt your life. Living with pain will be a whole lot harder if you’re on your own or in a strained relationship; if you’re naturally pessimistic and resistant to change; if you lose your job or are trapped between benefits and low paid part time work; or if you expect a magic cure.

Doing things you love is important. I’ve always loved to dance and it lifts my spirits so much that the hike in pain is worth it, with a good rest afterwards to recover. And letting go helps, too. So I sometimes give in and have a private cry when the "never-endingness" of the pain needs an outlet, before I pick myself up and start again.

As clinicians
I have good general practitioners and a good consultant. They listen. They give clear, full answers to my questions and they’re open when they’re thinking things through or aren’t sure about something. That’s incredibly important for trust. It’s helpful to hear their active problem solving. It’s honest and helps me to be realistic when there really isn’t an answer. And it makes it feel like a shared journey, rather than being the object of their unspoken thoughts.

Doctors can make a difference when symptoms change. It’s difficult to know whether changes are part of the ongoing problem or might signal something else. There’s a danger of becoming scared of "what might happen" and stopping doing things, so I’ve had to learn to balance staying active and being sensible. I hate making a fuss and don’t want to live with constant attention to how I feel, so continuity and support from doctors who know you is crucial. It can be difficult for doctors too when little can be done medically to change the impact of persistent pain.

But more than anything else, the biggest difference that clinicians and managers can make is to ensure that patients learn ways to cope with their pain as early as possible. There’s no such thing as a typical patient. And yet we all need to understand our pain and learn how to cope with it. If we can learn to do that effectively, as early as possible, it helps clinicians too. The worst thing—for the patient and their family, for clinicians, for the health service, and for the economy—is to leave pain to create a downward spiral.


A doctor’s perspective
Chronic pancreatitis is an unusual and unpleasant cause of persistent pain. It is described with difficulty, often as pain that is diffuse, deep inside the abdomen, and in the back. It is often worse on lying down so that sleep is interrupted. Combined with diarrhoea and constant fatigue it is easy to understand how a patient could become desperate and might plead to have the pancreas removed to abolish the pain. Healthcare professionals often assume that the patient has been an alcoholic and adopt a hardening attitude.

Our understanding of the mechanisms of persistent visceral pain is advancing rapidly. Acute pancreatitis is known to release inflammatory mediators that stimulate autonomic C fibres, transmitting a barrage of nociceptive input to the dorsal horn of the spinal cord, which responds by becoming more receptive to pain inputs, a phenomenon known as "wind-up" or central sensitisation. Previously silent NMDA (N-methyl-D-aspartate) receptors become active, and impulses are sent via the dorsal columns to the limbic system and higher centres of the brain. Descending facilitatory pathways from the rostral area of the brain are activated early in the process, and this may increase the perception of pain even further. For reasons that are less clear these pain pathways do not always revert to their "normal" state when the acute episode is over. Persistent pain may be related to the severity of the original illness, to ongoing sensitisation by inflammatory mediators, to altered immune responses, and to genetic factors.

As with amputation of a limb, removal of the pancreas will not remove these secondary changes in pain signalling mechanisms, and will not abolish the pain of chronic pancreatitis. For similar reasons, coeliac plexus block, successful in treating pain from pancreatic cancer, is not helpful for pain from chronic pancreatitis.

The pain from chronic pancreatitis is usually responsive to strong opioids and may also respond to agents used to treat neuropathic pain, such as gabapentin and amitriptyline. Strong opioids, morphine, oxycodone, fentanyl and buprenorphine have to be titrated to response and the dose closely monitored, preferably by a pain specialist. Apart from chronic constipation long term opioids are known to suppress the hypothalamic-pituitary axis, leading to loss of libido, altered sexual function, and in some cases suppression of cortisol levels. However, when used wisely, opioids can improve quality of life and activity levels.

Mary highlights the need for a patient with chronic pain to develop coping strategies and a sound understanding of why the pain is persistent and why it cannot be cured. She is very receptive to the principles of pain management and has applied them in a remarkable way. She has also managed to remain optimistic and leads a fulfilling, albeit different, life. Other patients take longer to do this; some never achieve this acceptance and continue to search for a cure.

Joan Hester, consultant in pain medicine



Useful resources



Possible barriers to effective pain management
Several factors may limit the effectiveness of pain management. These may be to do with the patient or the way services are offered. Every patient is different, with different views and approaches, but it’s worth thinking of ways to minimise possible barriers. The following are not exhaustive or in any priority order.

Patient barriers

  • Resistance to change
  • Generally pessimistic view of life
  • First language other than English
  • Income problems and/or "benefit trap" (where someone receives more income from benefits than they would from employment)
  • Strong expectation of a "cure" for pain
  • Disability other than the disability caused by the pain
  • Limited availability for pain management sessions—in terms of time, place, transport, and costs

Health service barriers*

  • Pain management sessions at the end of a patient journey rather than the start
  • Long wait between the diagnosis of the medical condition causing the pain and the referral for pain management
  • Long wait for the first "pain" appointment
  • Medical model rather than patient partnership model
  • Pain assessment tools administered by clinicians rather than the provision of tools for self assessment
  • Jargon—for example, "psychological techniques" rather than "ways to manage pain"
  • Lack of follow-up

*The Department of Health’s new "18 week referral pathway" for pain management (www.18weeks.nhs.uk) should help to minimise these barriers


Cite this as: BMJ 2009;339:b2786

Contributors: MR wote the main text and the boxes about useful resources and barriers to effective pain management. JH wrote the doctor’s perspective box.

Competing interests: MR is a member of the British Pain Society’s Patient Liaison Committee. JH is immediate past president of the British Pain Society.

Provenance and peer review: Not commissioned; not externally peer reviewed.

(Accepted 18 January 2009)


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